01.01.2020

My colectomy and IRA surgery.

A colectomy is a surgery to remove the colon from the body. IRA stands for ileorectal anastomosis. The plan is to take down the stoma, remove my colon, and then attach the small intestine to my rectum. Yes it is possible to live without a colon and I am living proof. Here is the story of my surgery.

From the time I got news from my surgeon about moving my IRA surgery up (I got the call on September 27) to the actual surgery date on October 11, I was in survival mode. Pain at my stoma site was constant 24/7. The fear of having a blockage at the retracted stoma opening was a real concern and the only way to prevent it was to eat very small portions or all liquid food. You can read about my experience with my ileostomy here. I was hungry and tired and counted down the days until I would yet again go onto the operating table. To be honest, I was in so much discomfort each day that an operation seems like a relief. I knew getting my colon out was irreversible, and there “could” be complications, but I didn’t second guess this choice. I was 99% excited and 1% nervous. This was the surgery I knew I wanted all along. I remember the follow up visit with my gastroenterologist after my colonoscopy in November 2018. He explained this surgery and how it would relieve colonic inertia. This gastroenterologist thought I may end up with an IRA reconnection someday. As much as that news was a shock, I knew that God intended for me to have this surgery. And here I am almost a year later, waiting eagerly to have my colon taken out forever. 

When the body is depleted and “starving” for nutrition and food, it’s hard to focus and concentrate. My school work was hard to finish and I just wanted to be on the other side of surgery. The actual day came up so fast, that I didn’t have time to worry or ruminate about the complications. Thankfully this was probably God’s plan for me, knowing I love to research and find out all the information possible. But due to my decreased concentration and lack of time, I just went into the surgery, trusting in my surgeon and family to help me after. I knew my body was capable of this and I prepared as best as I could. I ate more protein daily to help build up the stores that I would need to heal my tissues after surgery. I got my room and clothes at home ready to have everything easily accessible.

October 11, 2019 5:00 am. I hardly got much sleep to be honest. This was due to waking up 5x to actually change my ostomy bag (not just empty it), I was in pain and hungry! I did just clear liquids on October 10, but didn’t need any laxatives or bowel prep. Hurray for that, because there was no way I wanted to touch laxatives again. I had a simple hospital bag packed with an outfit, phone charger, a few baby food pouches and tuna packets (incase I wanted something besides hospital food), and threw in a few depends women’s diapers. 

I was well prepared for what was to come in terms of bowel movements. My surgeon warned me it would be from 6-20 times a day. I remember receiving this information, and my first reaction was, “that would be wonderful!” Most people would think going to the bathroom that many times a day is not having a quality life. But for me, that sounded like a miracle because I dealt with debilitating constipation or colonic inertia for most my life.

I also want to note that the loop ostomy was a very important diagnostic tool to help my surgeon and I determine how my body would react with permanently taking out the colon. It proved that my small intestine did work and my bowel movements would be about 6x a day (if it stayed consistent with my ileostomy output since I emptied the bag 6x a day.) The hope was that my electrolytes were being properly absorbed by my small intestine instead of the colon, and I would not experience extreme dehydration since things were bypassed for 5 months. But we wouldn’t know for sure until after the procedure how my body would react. Given that my BMI was clinically underweight, I had more of a risk for post surgical complications. UR

8:00 am I’m out the door and it starts to snow for the first time of the year. We were expecting a big snow storm in Minnesota actually over the weekend. But I still decided to go without a coat, because it’s not like I was going to be outside. I learned over the past several hospital stays that I need so little when staying at the hospital. Basically they have everything you need! My dad drove me to the hospital and actually he was the only family in town for this surgery. By now I was used to surgery and it didn’t scare me. I wished my mom was here too, but she was out of town for another month. So my dad and I headed 30 min to the hospital which was a familiar route. 

9:00 am My dad drops me off at the maim entrance and I know exactly where to go to check in at Surgery Admitting. I get my picture taken for the new hospital system profile. My dad finds me and after I sign all the paperwork, we head upstairs to the surgery prep wing. I actually stayed here after one of my prolapse surgeries because all the post-opt rooms were full. Everything is so familiar and I wasn’t stressed. I was hoping and praying my bag would stay on just a few more hours until surgery. I decided to not even bring back-up supplies. I was determined the ostomy bag I put on this morning was going to be my last and I was pretty lucky my body cooperated. Though since I wasn’t eating, my stoma was not retracting and pulling inside, and any liquid that came out was properly going into the bag. If I were eating the day before, this would be a different story and my stoma would be retracted inside and liquid seeping out the edges. 

I am asked my name and birthday every 5-10 minutes or so which is typical of hospital staff before surgery. I am told to change into the “bair hugger” operating gown that can heat up to keep my body temperature stable. I’m brought into a huge pre-opt room will a wall full of windows. I probably got the nicest in the hospital! My dad meets me in there and we are in awe of the winter storm clouds rolling in. The view kept us pretty happy for hours as we waited. 

10:00 am the pre opt nurse comes in and successfully puts in 2 iv’s needed for surgery, one in my hand and one in my arm. Blood had been taken and was sent down to the lab. We got a call 30 min later and by the tone of the nurses voice, I knew something was up. My potassium was significantly low due to 24+ hours of only liquids. So without raising it to a healthy level, surgery couldn’t be started. Since nothing can be given by mouth at this point, IV potassium was ordered. We ran into a problem because I have a lidocaine allergy and lidocaine is needed to buffer the topical burn that accompanies IV potassium. The nicest anesthesiologist was assigned my case and he decided to just start the IV potassium without lidocaine after I am put to sleep and before they start operating. 

11:00 am My surgery was supposed to start by now, but my surgeon had 2 cases earlier this morning down the road at the hospital’s same day procedure clinic. I remember he specifically scheduled my surgery so mine was the main case of the day. It was estimated to be a 4-6 hour surgery. And while we waited, my dad and I talked over the phone to my sisters and mom. I got up to go to the bathroom and got really lightheaded due to low potassium. I was so ready to be done with this ileostomy bag. 

12:00 pm Dr. B, my surgeon arrives! He comes with news that his plan has changed regarding the type of surgery he will be doing on me. Instead of doing a completely robotic surgery, I would have my colectomy done laparoscopy and the reconnection IRA part done more manually. There were a few reasons for this last minute change. One was that his assistant surgical PA got called home for a family emergency. So the main help he has now is a surgical nurse (whom he trusted very much). There were also no surgical residents who had enough experience to rely on solely for help. So instead of the PA helping with the robotic arms, the surgical nurse would be the one helping with the laparoscopic ports. Also, given my small size, I had to be treated like a pediatric case. I’m only 5’1” and 100 lbs so the 5 robotic arms would not have fit horizontally in my abdomen, while being spaced 1-2in apart. The laparoscopic ports could be placed in different locations and were smaller entry ports. The only downside is that my pelvic bikini scar would be bigger because he would need more room to pull out my colon and surgical attach my small intestine to my rectum. Dr. B assured me that he has done it this way for the longest time and it has a high success rate. I was totally ok with this change and trusted God had this under control.

I then ask Dr. B one last time of the surgical plan and have him promise me that he won’t keep any of my colon, not even a few centimeters. He agrees, even though typically he keeps part of the sigmoid for most patients. Deep inside, I knew my whole entire colon needed to come out and I spoke up clearly with my wishes. Since my surgeon was the one who did my ileostomy and my prolapse revision, he trusted that I knew what I wanted. I am thankful for that and I trusted him too. 

Dr. B mentions that he first has to eat lunch and then will be meeting me in the operating room! He gets up and shakes my dad’s hand and I see in my dad’s eyes the trust he has in my surgeon. This gave me reassurance and peace. We had to trust him with my life since he would be opening up my body and removing an organ. As he walks out the room, he turns around and points at me. “I’ll see you in there “. Even though I won’t remember him in there because i’ll be asleep, it gives me comfort that he will be there the whole time making sure I get through it. At that moment it hits me that this is a really big surgery. My nerves kick in and I break out in a cold sweat, but look over at my dad and he reassures me of the whole thing. I need this surgery and I have been preparing all year! We have all out family and friends praying too, it will be ok.

1:00 pm The pre operating IV antibiotic was brought in, so I knew we were getting close to the actual surgery time! The nurse anesthetist (who was young and looked like my age actually) comes in with the very nice surgical nurse and they go over the plan with me. I ask them if I can please be awake and get to see the operating room. They agree to give me a small dose of the nerve reducing anesthesia medication so I can see the whole thing. I give my dad the biggest hug goodbye and tell him “I’ll see you later!”. One last glance and they are wheeling me down the hall. The nurse anesthetist pushes a small dose of the medication and honestly I didn’t feel any different. I am pretty sure I was becoming resistant to this medication after receiving it so many times this year before the operating room.

I get in the operating room and boy it is cold! I remember everything positioned so perfectly in the room and they explain the pieces of equipment. I move myself onto the hard operating bed and help them position my arms and legs. At one point the nurse anesthetist smiles at me and asks “are you getting sleepy at all?” At that point they put on the oxygen mask and decided to give me the stronger meds to really knock me out. “Oh my goodness, this is it I thought”, as I took a big breath. And that was that, I was fast asleep. 

2:00 pm My surgery starts. I obviously wasn’t wake for this part, but I will fill you in from what my dad and surgeon told me. My dad goes to wait in the waiting room, assuming it will be 4-6 hours. By the 5 hour mark, there was still no word and my name had not appeared on the surgical board. People went home and the hospital cleared out, until he was the last one waiting there alone. He got nervous thinking something went wrong, and finally at 10 pm Dr. B walks out to let me dad know what happened. He says that my surgery went well (phew! what a relief for my dad). But the surgery did take 8 hours, and there were a few reasons why it took so long. One reason was because my surgeon is very thorough and careful, so he takes his time. Also, my weight was low and he had to be extra careful not to knick any organs or bone when he was cutting the colon away from the connective tissue.

 I had 4 laparoscopic incisions, but the one by my left hip was actually not usable because it was placed too close to the bone. Instead to get a better view, he cut the bikini incision a few inches longer, so it ended up being about 5 inches. Nothing went wrong, it was just slightly different than expected. After pulling out my colon, Dr. B noticed that my colon was very dilated, stretched out, longer than normal, and atonic (no muscle tone). One concern he saw, was that my rectum was also stretched out and dilated.  So during surgery, he proceeded and cut off the colon from the rectum muscle. After cutting out and pulling the colon from my body, the next step was to attach the small intestine to the rectum. Once he stapled the 2 together, immediately the rectum shrank to normal size, compatible to fit the small intestine’s diameter. Crazy how my body did that so naturally and how surgery can be used to perfect a dysfunctional body. My insides were being rearranged to be given the chance to work again.

Though before cutting the colon away, he cut the stoma away from the abdominal wall and the internal stitches he placed in August to prevent the prolapses. He saw the stitches were still nicely intact and no additional scar tissue was made after that surgery. The ends of the colon and small intestine were stapled, so he could cut the colon out without anything seeping into my abdominal cavity. Then about 20 cm or 8 inches was removed of my small intestine before attaching it to the rectum. There needed to be good blood flow to connect the two successfully. My blood vessels previously attached to the colon were divided and redistributed to my small intestine.

As they were operating, they had to manually move my body from left side to right side to obtain the angles they needed. They also saw my uterus and it was moved gently to the side to get a clear field. The ileum of my small intestine was then connected to my rectum (hence the name, ileorectal anastomosis). It was done so with a surgical instrument that fused the 2 ends together with circle staples. These surgical staples will remain in my body forever. I personally think this was a fascinating surgery! My colon, with my appendix attached, was then sent to pathology for further testing. 

11:00 pm I remember laying in the recovery bed and opening my eyes for the first time. It was a relief to be on the recovery floor and it was a familiar spot. I felt a lot of pressure in my head from the pain meds and anesthesia and my whole body was shaking. I’m not sure why it was shaking, maybe pain or maybe because I was cold. The nurse asked me if I am in pain and actually I said “yes”. I was too afraid to push the button with the dilaudid opioid, so I asked the nurse to. I actually didn’t feel relief from it but only an overwhelming wave of nausea that made my body shake more. I close my eyes and dose off but am startled by my surgeon Dr. B. He grabs the side rails of the bed and looks me in the eye to asks “Caroline, how are you?” I’m thinking…well it feel like I have been cut open! I can barely talk. But I managed to nod and say “ok”. He smiles and I hear him talking to the nurse letting her know how much blood I lost. It was 136 ml and thankfully this is minimal!

Next thing I know, they are wheeling me down the hall to my recovery inpatient room. As we get to the 4 west floor, and my dad rushes up beside me and smiles huge. He says to me a few times, “You did so well sweetheart!” and the sound of his voice made the world ok again. He actually was one step ahead of everyone else. My dad just knew the floor to go to and went on his own without waiting for the surgical pager to buzz. He knew I wanted to see him right away and I am so glad he was there.

We wheeled together to the room at the end if the hall. It had a big window but it was midnight by now. My dad notices my body shaking right away and asks if everything is ok. “I don’t know why this is happening” and was just as confused as him. My body had a mind of its own and it’s something I had never experienced before. I was scared but I was not alone. I muster up the brain powder and ask if everything went ok? He said “Yes it did. The whole colon is out, it just took a little longer than expected, but I’m all reconnected”. And so he pulled up a chair and sat with me for hours. I keep shaking and hesitantly ask for 1 more dose of the dilaudid. Again it didn’t help, but only made me incredibly nauseous. I was so thirsty and so I kept asking for ice and more ice and water. At one point the water just started spewing out of my mouth and it kept coming out. I aimed it over the bed and unfortunately onto my dad a few times. My dad was so patient and never got upset. The nurse wasn’t happy and took away all the ice and water. This was just a little bit of the tough love she gave me through the night. Eventually at 3am my dad said he has to get some sleep. So he said goodbye and that he was going to come in the morning. 

I was wondering when I would first go poop. So I asked the nurse and she said most people take several days. I was alittle surprised because I thought it would be sooner. I ended up sleeping until the morning hours. It wasn’t even light out and 2 nurses came in. I must have told them my pain was ok during the night because I didn’t want the opioid. So this morning, Saturday October 12, I ask for IV Tylenol and they said they would ask the doctor on call. It took forever, like things normally do on weekends in the hospital and I decided that there was no way I was going to press the pain button again and experience that nausea. I guess I would just deal with the pain. 

The next thing was the heparin injection, blood draw labs, and then attempting to walk. I had 3 IV sites, because one blew during surgery from the potassium. The morning “walk” was torturous. But actually even rolling to the side was hard. I needed help sitting up and when I did, my whole abdominal cavity dropped physically. It felt so strange and the gas pains were all around my abdomen. There was alot of gas, just like my ileostomy surgery. I actually think the gas pain was probably the worst part. I managed to stand and take 2 steps with 2 nurses helping me. I felt as if I were going to pass out and begged to lay down. We tried this again and the 3rd time, my dad was there to watch. I knew I needed to move, but my body has never felt so weak in my life. I kept thinking to myself “why can’t I do this? Why cant I walk like after my first surgery?”. The truth is, I was malnourished and was skin and bones. I had no reserves, no pain meds, and was physically past my limit. Tears streamed down my face as my body shook trying to walk to the door. The one nurse kept telling me one more step until my dad even stepped in and said “no more right now”. He saw what I felt. 

My hair was a mess, my body was swollen and covered in surgical glue and iodine. I was hungry, thirsty and in pain. Each hour I focused on what was only right in front of me. It kinda felt like I was dying. As an outsider, my dad explained that he also saw my grandpa struggle in a similar way after he had open heart surgery. My dad was there for him, like he is here for me right now. He sat there, lovingly watching me hour after hour. I was in pain and relearning how to function without an organ. I could never have asked for more and am so lucky to have him. This colon surgery I had was pretty big.

My only wish now was that I wanted to poop. I was ok to drink clear liquids and had juice and water. I needed IV potassium again because my levels were low and it was administered at the slowest rate to prevent the burn without lidocaine. Eventually I was transitioned to the fizzy oral potassium drink. Dr. B was not in town during the weekend so the doctor on call made rounds to see me. He didn’t “ok” the Tylenol for some reason and didn’t even listen to my belly, but only looked at my incisions and went on his way. My old stoma site was tied shut with a single loop stitch. The other incisions were glued shut. It was amazing to see no ostomy bag. My dad just sat with me and I was mostly silent or sleeping. He talked with my mom and sisters and brother. I heard their voices and they told me how proud they were of me. But I could barely get out a “hi”. 

Sunday October 13, 2019. It is the anniversary of Our Lady of Fatima and I pray today will be the day I poop. I just wanted to poop naturally for the first time in over 10 years. In the morning I felt gas and my intestine popping, juggling and sloshing to the sides. Those big shifts in my abdominal cavity were some of the strangest feelings. My intestine were trying find their new place without a big sluggish colon sitting there. Around 5 pm all of a sudden, my intestine started to get some gas out. An hour later, it was a constant trickle and flow and I learned that the depends diapers are life savers! It was humbling but also a relief! I remember in the middle of the night, I could’t hold it until the nurse came to get me to the toilet. After she came and got me to the toilet, I sat there and cried thinking of about how I just pooped myself. She wiped down my body and my back the gave me a fresh diaper. I still had my catheter in from surgery because it was too difficult to get up to walk to the toilet without her assistance. This new nurse was probably the nicest nurse I had and reassured me it will be ok, and it will get better. I got a few hours of sleep that night before my bowels woke me up again. But I am not complaining, I loved it!

There were many times where I actually just went in the diaper in bed because I was too exhausted to get up to the toilet. But the nurses really encouraged me to tell them a.s.a.p. so I could learn to go poop on the toilet. It was like potty training all over again. It was frustrating and painful at first, relearning and experiencing how my bowel movements were now functioning.  The weeks leading up to the surgery I was worried if I would remember how to “go” after having an ileostomy for 5 months. But the body is amazing and I sure remembered. Without a colon, the stuff coming out was pure liquid and would be that way until I start eating and the intestine relearn to absorb water like the colon once did. This was all unknown territory for me.

I was still full of drugs from surgery and happy one moment and sad the next. I also remember missing my mom so much Sunday night and just wanted her to be sitting by me. But this surgery was not originally planned to be in October. It was supposed to be at the end of November, so she could he home for it. God had other plans and honestly my body wasn’t going to last that long because I was almost starving. I needed the surgery now, my surgeon knew it, and I knew it. Life doesn’t go as planned and I just had to realize this was the way God planned, and it was best.

8 am Monday morning, I was already up from going to the bathroom and trying to walk again. This time they gave me the walker to lean onto and I successfully got to the door and back without anyone supporting me. Dr. B was back and came in to see me. He commented how good I look. I didn’t feel too great, but maybe I was turning a corner. This was my first time talking with him since that moment I saw him post opt. He took a good look at my abdomen and pressed around. He changed the gauze on my stitched up stoma site. He told me about the surgery, explaining that even though it took longer, it went great. He reassured me that he flushed the anastomosis connection site and there was no chance of a leak. None of my colon was left, just the small intestine and rectum. I told him how often I was going to the bathroom since Sunday evening. I said I am so very happy and I love this new intestine. It’s way better than before and I am so thankful. He decided to boost my diet form clear liquids to full liquids for lunch and then if I do ok, a low residual diet for dinner. I still was no on any pain meds and he was shocked by this, but I just did what I had to do. He ordered anti nausea meds which I needed as my intestine were a bit shocked to the eating/drinking food after surgery. I also got my cathedar removed by the nurse soon after he left the room.

Gas was still the worst part about introducing new foods, but my dad stuck around and that helped the time pass. He helped get me up and walking without the walker finally! I was determined by the end of the day to walk to the end of the hall. In total I got in 5 walks on Monday and I think that helped the healing and my intestine start settling in place. Each time I got stronger and it was only 2 days ago I could barley get in 2 steps. My dad brought me fresh grapefruit juice, green juice, and cranberry juice from Trader Joe’s. For diner, I successfully ate scrambled eggs, a few bites of salmon and an ensure drink. At first the small of food was horrendous, but slowly it got better. At 6 pm we talked with some family over the phone and the nurse took out one both IV’s since I was successfully drinking and emptying my bladder. These were all huge steps after having colon surgery only 3 days ago. To me it seems like a miracle that my intestine are working and I was pooping every few hours. I was thankful every hour. 

Tuesday October 15 went like this. My blood labs were routinely taken, nurses checked on me, Dr. B checked on me, walked down the hall with no walker and successfully ate. Everytime I went to the bathroom, my dad and I celebrated. Sometimes farts turned into poops, but we just laughed and that is what the diaper is for. My dad knew how much this surgery meant and he kept saying how surreal this is that I have no ostomy bag and I can actually poop for the first time in over 10 years. He shared my joy equally and I am so thankful to have my family walk this journey with me. In total, I was averaging going to the bathroom 12x a day. It would eventually slow down to 6x a day or so after a few weeks.

Dr. B said I successfully had to eat 2 meals and then I could actually go home today. It felt so soon, but I was doing pretty good recovery wise and there wasn’t more the hospital could do. I got out my real clothes and slipped them carefully over my fresh incisions. I was taught how to tape some gauze over my stoma site and what to watch for over the next two weeks. There was very low chance of a rupture at the anastomosis site since my surgeon did a side-to-end connection and flushed the site with saline to check for leaks at the end of surgery.

I am in awe of this new body and am thanking God each day that I got to have surgery, and that it was successful. I felt like I had made it to the finish line, and that I was given another chance at life. No more ostomy bag, no more constipation, no more torturous testing. My dad helped get my things together and got me settled in the wheel chair. He rolled me down the familiar hospital hallways and to the lobby. I was going home today! This was my 7th surgery this year and it was going to be my last.

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11.03.2019

Living with an ileostomy

I want to give a warning about this post. It does have pictures of my stomach, stoma, and poop. These pictures are meant to give you perspective and explain different terms I use.

After my ileostomy surgery in May to fix my colonic inertia, life started to get better, MUCH better. It’s hard to explain to someone what it feels like to go months without going to the bathroom and then one day it’s fixed. I got immediate relief when I woke up from surgery on May 13. I forgot what it felt like to properly digest and pass food in a healthy amount of time. The bloating, distention, straining, and stomach cramps all were becoming memories.

One thing I was not prepared for though, was the adjustment my body had to make balancing electrolytes. The colon’s main role is to store waste and undigested food until it is released and also absorb the sodium, potassium and other electrolytes from the stool. I battled episodes of feeling so lightheaded, I had to ask for help walking from one room to the next. Thankfully my surgeon figured out that my low sodium levels were the cause and we monitored it closely with weekly blood tests for 2 months. Since I also have a history of POTS, my body already has the disposition to drop blood sodium quickly. For several weeks I could not easily absorb sodium from salty food or electrolyte drinks like drip drop or liquid iv. I felt much better getting a scheduled weekly IV saline infusion and it saved me from going to the ER each week. Having low sodium or hyponatremia can be dangerous and cause the brain to swell if it gets too low. Usually the patient has confusion if the blood sodium level is around 120 (range is 136-245). I had several times where my blood sodium level was 122 or 124 and I was totally alert and felt well after 1-2 saline IV bags, so the doctors did not hospitalize me.

Honestly the weekly iv did not interfere with my life much, and allowed me to live life to the fullest. The next few months were spent experiencing life to the fullest and spending time with the people I love. Living in a body that works and is healthy is something I will never take for granted. I hiked around some local waterfalls, went berry picking with my niece, swam in the lakes, took walks around the neighborhood, grocery shopped, did errands, went to church and young adult group, visited with friends, and everything else in-between. I was cherishing these moments and did not grow tired from pain or exhaustion like I would have months prior. I thanked God each day for this life changing surgery and appreciated even more the hard years of medical testing and trips. It all was worth it and my patience and endurance paid off.

I’ll include a companion picture of my belly (on an empty stomach) with colonic inertia (left) vs. ileostomy (right). As you can tell there is a huge difference. The bloating was not from food. It was actual fecal matter that was building up for weeks at a time and unable to come out due to my paralyzed colon. X-rays that were done during the time I had colonic inertia showed my colon was filled to the maximum with poop. After my ileostomy surgery, I was so much more comfortable in my body and was not in pain eating or moving. I loved my ileostomy because it was giving me my life back and I could enjoy daily activities that I could not before. My digestive system emptied at a healthy rate and I was not filled with poop.

Eating with an ileostomy felt much better too. Food actually moved through my small intestine and into the bag within 3-10 hours, depending on the type of food. This daily occurrence was all the proof my surgeon and I needed to confirm that my small intestine was working. I had more energy, and honestly it was a complete turnaround from before surgery. I am sure eating and getting nutrients in and the waste out was a big part of recovering my energy. If I did errands, I could easily stop to eat or empty the ostomy bag in a toilet. Life had more of a natural routine and I started to have a happier disposition.

One of the best things that I could totally eliminate from my routine were the enemas and taking motility medications and laxatives. I no longer spent hours crunched-over in pain on the toilet or vomiting from the nausea and side affects of the medication. I no longer was attached to my heating pad 24/7. The feeling of throwing away all the bottles and supplies was something I never thought I would have the chance to do. My surgeon really gave me a second chance at life and I couldn’t be more thankful. My body physically was doing much better too. Having a colon full of poop really was taking a toll on my health. Before surgery my thyroid was low despite medication. My hormones were out of wack, my liver enzymes were high, my body retained a lot of fluid and my skin was red and peeling from eczema. After surgery these things got better and even my mood and thinking become more clear. I would do the surgery over again in a heartbeat!

Through all of my chronic illness, I have seen a therapist to help me cope with all of the medical trauma. Over the years, she has helped me immensely and I continued my appointments, even though life was going ok. I am human and still had frequent memories of living with colonic inertia. PTSD was something I needed to work on and move past my fears, and I slowly made progress. There came a point where I allowed myself to simply move on and took a big leap to start working towards my goal of nursing school. I didn’t want to be limited to a job as a colonic hydrotherapist, and nursing was definitely something I could see myself doing. In July of 2019 I signed up for my classes and was so excited to start!

Ostomy 101

It was an adjustment to have the routine of changing my ostomy bag and simply finding the right supplies. I had visits with my ostomy nurse to help me figure out what products sat well on my stoma. There is SO much information a patient has to learn to successfully manage their ostomy, and I loved learning about it. I really liked the Hollister wafters and pouches and settled on a 2 piece system. It really boils down to the patients preference and if their stoma is normal, flush or inverted. Mine was pretty normal, which made caring for the skin around the stoma easier, and my ostomy bag could last 3-5 days without changing it.

Changing an ostomy bag consisted of peeling off the adhesive sticker and exposing the stoma (stoma=the “nub” piece of your small intestine sticking outside your abdominal wall). During a bag change I would lay out all the supplies and then measure and cut my wafter to ensure it fit securely around the stoma without extra skin exposed. Then I would remove the old bag, wipe off any sticky residue with adhesive remover, clean the skin around the stoma, apply stoma powder if needed, apply adhesive spray, and then stick on a new bag. It was important to apply a few extra minutes of pressure with my hand, around the seal, to help “melt it to the skin”. I would sometimes use a belt to help secure it down a few hours after a change.

I would usually change my bag in the morning when the stoma was not “active” and producing output. Emptying the ostomy was just like “pooping” and I would open the velcro flap at the end of the bag and squeeze out the contents (output) into the toilet. Typically I would do this 3-6 times a day. As my body started to absorb more fluids and electrolytes, the output started to get thicker (applesauce and toothpaste consistency), which is what I wanted. By the end of June, less than 2 months after my surgery, my small intestine had successfully started to take on the role of the colon and absorb sodium better. The body is incredible how it can adapt like this! I was free to stop the weekly IV’s. I loved this freedom and for the first time in who-knows-how-long, I was not tied down with any big medical problem. Wow!

Too many prolapses!

Now fast forward to July 11, 2019. I remember going to sleep but seconds after I laid down, I had an unfamiliar sensation like someone had punched me in the stomach. I get up to go check my ostomy bag and saw that my stoma had prolapsed. My intestine basically fell out of my body a good few inches and was dangling in the bag. There was a lot of pressure, because it was rapidly swelling, and I quickly take off the bag and then stand there, frozen with panic. I grab a ziplock back and tuck it in to my pants to catch whatever output was coming out.

Since I have a loop ileostomy, there is naturally a distal and proximal end, and it always looked like I had 2 stomas. The proximal end is attached higher up to the rest of my small intestine and stomach and this is the end that the output comes out of. The distal end is the end that is attached to my empty colon sitting inside my body. When this prolapse happened, the proximal end came out. But I watched as it slowly sunk back inside and then the distal end came out. In the picture above you can see the prolapse migrating sides. After the distal end came out, it swelled even more to the point where it blocked off the proximal end completely so it wasn’t visible and created a blockage in my intestine, so nothing more could exit my body. It started to get a dusky colon like you see in the picture below and that is a concern blood flow is starting to be restricted.

I knew this was an emergency and call my brother because I figured he was the last one up. He didn’t hesitate to rush me into the car and drive me to the hospital that my surgeon was at. The ER dr. wanted to try and push the stoma back in because there is high success with “reducing it” by sprinkling plain white sugar on top to draw out the edema and then press it back into the body. She had no luck with my swollen stoma and honestly I was excruciating pain. My poor brother, sat in the corner watching the whole thing. Finally the surgeon on call came in to let me know that I would need to go back to the operating room under general anastasia and they will try to push it back in while every muscle in my body is relaxed. Dr. W was one of the other colorectal surgeons at the hospital and works side by side with Dr. B, so I trusted him. By 5 am my parents came and kissed my goodbye before I headed into the OR. By late morning, I wake up in the recovery room and look down to see my stoma back to normal. Phew that was a relief!

The next day, my surgeon Dr. B comes by to see me as he is making rounds. He mentions that on the CT scan I had the night before in the ER, my whole small intestine showed that it was packed with old food matter. This concerned him, but he said we would watch it and I was to go back on a low residue diet for the next month. He decided that it would be best to postpone the final surgery (the colectomy and IRA reconnection of my small intestine to my rectum) until next year 2020. He originally said we could do it 6-8 months after my loop ileostomy surgery is everything goes well. He wanted me to be 100% ok with living with an ostomy before doing anything else and obviously my body was not ok with it, given that it prolapsed. I was disappointed but understood.

2 weeks go by and I find myself in the same situation, my stomas had again prolapsed in the middle of the night. I was shocked and just as scared about the pain I would have to endure. This time in the ER when the doctor tried to “reduce it” they gave me propofol in the IV so I would not remember or feel the pain. Again, like the first time, this did not work and the surgeon on call was brought in. Unfortunately my surgeon, Dr. B was out of town for a few weeks, and I got a different colorectal surgeon Dr C, who also works with my surgeon. He successfully pushes the stoma back in, in the OR and I stayed in recovery until evening. I didn’t even have to spend the night in the hospital and once I ate and there was output, I was free to go home.

I had a sick gut feeling that this would happen again and I didn’t even unpack my hospital bag. The next week comes around and sure enough, my stoma prolapsed again. Honestly I was very frustrated and kept replaying the events in my mind of what I was doing before the prolapse thinking that I did this. Of course nothing I did caused the prolapse, it was my body malfunctioning. The surgeon who pushed it in this 3rd time, was a general surgeon. He was very nice and felt bad I kept having this issue, but agreed it was best to wait until Dr. B gets back to decide what to do as a permeant solution. Back to the OR I went. He makes a comment that the will likely happen again if we don’t do a stoma revision surgery to stitch it to the abdominal wall.

I get home the next day and I remember feeling quite hungry. I start to make a smoothie and the blender top pops off and spews the smoothie all over the whole kitchen. It was a disaster and I couldn’t help but cry. That tiny amount of belly movement with each cry was enough to push the stoma back out. This time it didn’t just fall out a few inches, it prolapsed about a foot. I was frighted but remained calm. We headed back to the ER and another general surgeon was assigned my case. She was very quick to bring me back to the OR and start reducing it back inside. All the previous times I was in the OR for this, it only took 15-25 minutes to push it back in. This surgeon could not get my stoma back in my body, even after 45 minutes of trying. She paged my surgeon Dr. B to come help her. Thankfully Dr. B was back from vacation and successfully got my stoma back in, but he later said it was a close call, the stoma was incredibly swollen. I was lucky they didn’t have to cut off any portion of my intestine that time.

Once I woke up, dr. B comes to see me. All 4 previous surgeons had updated him about my constant prolapses. Actually almost everyone in the ER knew me by name and several of the nurses on the recovery and inpatient floors did too. He sits down with me and lets me know his thoughts. I could tell he was thinking out loud and presented the 4 cases that we could possibly do. 1.) He could internally stitch the stoma to the abdominal wall and hope that it stays put. 2.) He could create and end ileostomy and remove part of my colon and staple off the distal end internally. 3.) He could do the IRA reconnection where he takes the whole colon out and reattaches my small intestine to my rectum. 4.) He could just put my intestine back together and close up the stoma all together. I told him there was no way he could do the last option. I said I would rather have my stoma prolapse every week of my life, than live with my colon hooked back up and colonic inertia again. He knew I was serious and that helped him untimely decide what to do.

In his opinion after seeing my stoma in the OR the night before, it was way too swollen to properly attach to my rectum. He comments that I have lost weight and look weak and worn from the past month of constantly being in the OR. I knew that my body was past its limit too. The IRA surgery is a long 4-5 hour surgery and is something he likes to plan for, and not do by emergency. He decided on option #1 and said I was going to stay in the hospital a few days until he had time to do my surgery. There was no way my stoma was going to prolapse again under his watch. He made a deal with me that if this goes well, we can move up my IRA surgery to November because in the long run, my body may do better with the IRA. Obviously I don’t need my colon for my digestion to function and I do much better bypassing it. The plan was set and I stayed in the hospital for 6 days (August 11-16). Each day Dr. B came by to see me (sometimes 2x a day) and check on how I was doing. My parents came by each day to help me pass the time when I was not sleeping. I finally got my revision surgery done on August 15 the feast day of the Assumption of Mary.

Right before my surgery on Aug 15, my brother swings by, bringing my priest along to give me anointing of the sick. Then I was wheeled off into the OR once again. The surgery went well and took about an 90 minutes. Dr. B did about 6 criss cross stitches internally over the 2 ends of the intestine. He did it laparoscopically and I was only left with 4 little keyhole incisions and a normal looking stoma once again. I was very weak at that point because they didn’t allow me to eat solid food the whole time I was in the hospital. Dr. B’s theory was that the peristalsis movement from my small intestine was not only pushing the food out, but it somehow was pushing the intestinal walls along with it, causing the prolapse. We will never really know the real cause, but not eating for that week did prevent it from prolapsing in the hospital. I remember eating solid food on that Friday, the day after my surgery and it was amazing. Even though I was sore and exhausted from surgery, the prolapses were finally going to stop. I knew this revision surgery would keep me out of the hospital until my final IRA surgery, but I still decided to switch my classes to online and reduce the load, given that I wasn’t up for what I originally planned, after all of this. I was ok, and knew that all these surgeries were important to do now, and to prioritize my health more. This was just a season of life and it will get better.

The rest of August and September was spent out of the hospital and ER but definitely hard in terms of caring for my new ostomy. I was used to a normal stoma before this revision, and unfortunately even though Dr. B did everything right, my stoma inverted (sunk into my skin more than usual) after surgery. Whenever I ate, the intestine would pull inward on itself causing the stoma to sink deeper compared to when I was not eating. I had a feeling the intestine were being tugged by the stitches and although they needed to be there, it created a lot of distress. I could only eat very small portions of food at a time and frequently had to switch to purees to prevent it from tugging inward. The tugging sensation didn’t hurt, but then the output did not properly drop into the bag, but seeped behind the sticker and caused the ostomy bag to leak. My ostomy was inverted and you can see from the comparison pictures of my stoma, the change in shape and how the right one is sunken into my skin compared to the pre-surgery stoma pictures on the left. Poop is acidic and if it gets on the skin, it can irritate it to the point to bleeding, which it commonly did. I was in constant pain and lost even more weight over the next 2 months due to this problem. My life revolved around my ostomy and it was a hard time.

I was changing (not just emptying) the back 6-9 times a day. This meant ripping the sticker off and cleaning the very raw skin around the stoma. I would constantly wake up covered in my own poop because it would leak if I slept more than 4 hours at a time. Changing the sheets, cleaning the floor, showering, and then changing the bag was daily occurrence. I learned to set an alarm every 3 hours at night to change the bag and while half-awake, I would do the change and fight back tears from pain. Each morning I would wake up with my bathroom filled with supplies and my floor covered in poop because it was impossible to time these bag changes and the stoma was constantly active. Usually each change would last 30-45 minutes because the stoma was active. Before this revision surgery, an inactive stoma change could easily be done in under 5 minutes with no mess. Not only was it difficult to manage at home, but if I was to go out anywhere I had to carry plenty of supplies and know there was going to be a private bathroom available.

I was constantly going into see my ostomy nurse and trying new adhesives, convex bags, and anything she could offer. Nothing worked and my bag continued to leak day and night, and I was loosing actual sleep over it. The raw skin pain frequently caused moments where I didn’t think I could do this much longer. Dr. B saw this as a big issue and was getting concerned because I was loosing weight quicker than he expected.

By mid September we scheduled my IRA surgery for Oct 28. It was scheduled to be after midterms and before my finals. I had gone into the clinic to see my ostomy nurse that week and he saw me in the hallway. He stopped me before I walked out the door and looked more concerned than I had every seen him before. He said he was really worried that if I lost any more weight, the IRA surgery would be riskier and hard to recover from. My parents had mentioned that same thing and I was worried too that my body wasn’t going to be strong going into surgery. A week later, Dr. B calls me randomly one evening. He said he has been thinking a lot about my surgery and said we need to move it up, because I cannot go much longer with eating so little. I was so happy I cried with relief on the way home, there was finally going to be an end to this hourly suffering. We scheduled my pre-opt appointment for October 8, for him to answer any of my last minute questions, and then the actual IRA surgery was scheduled for October 11, 2019. Words cannot describe how happy I was to get this surgery! I was more than ready.

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09.06.2019

Part 2: Ileostomy Surgery

Read part 1: colonic inertia. 

May 3. Today was the day I was scheduled to finalize the loop ileostomy surgical plan and decide on the stoma markings on my belly. A stoma is the technical name of the inch of intestine sticking outside the belly. I arrived and brought my parents along, because I wanted them to get the rundown of this surgery too. It’s nice my family is close and I can ask them to be that second ear in these big appointments. The Methodist hospital has 4 WCON (Wound, Ostomy, and Continence Nurse’s) and I have gotten to work with all of them. Each one is incredibly caring and intelligent about all things ostomy.

The nurse, Kate marked 2 sites on the right side of my abdomen. I sat and stood up and bended at my waist. We wanted to make sure the stoma was not in that waist crease, or else I will have problems down the line with the wafer and bag sticking. She marked 2 spots on the right side of my abdomen for Dr. B to choose from based on my anatomy (and he won’t know which one will work better until I am in the OR). I had heard that a lower stoma placements is easier to empty the bag, because it’s closer to the toilet and there would be less of a splash.  She put a clear waterproof piece of tape over each one that would last until my surgery day. She then handed me the sample box of Hollister brand ostomy bags.

I held my first ostomy bag that day and was so intrigued. I didn’t know any of the technical names, but looking back, I was given a 1 piece and a 2 piece ostomy bag. It was strange to stick one on my belly. I wasn’t too concerned about the look of it, but right away I knew that I was going to live in high waisted bottoms and flowy tops. My uncle actually works for Hollister medical supply company as an engineer, so he was pretty excited about the supplies that I would be using!

This handy manual is how I began learning about each of the supplies. I was overwhelmed at first thinking about needing “supplies” to function. But I quickly snapped out of that mind frame and realized how lucky I am that I am getting this surgery and that I get to use these products. My ostomy was going to give me my life back. So it was time to embrace the medical supplies and nerd out the research and terms. That change of mind frame worked, and I quickly became invested in learning and researching how my life will change (for the better) and how I will be caring for my body from now on. 

May 8. I headed to my family practice doctor to get a medical checkup and clearance for my surgery. I was cleared for surgery but she did bring up the concern that my liver enzymes were considerably high (the highest in my life), and it was likely due to being chronically constipated and my body couldn’t break down the waste anymore. Plus all the laxative medications I was on wasn’t helping my liver. My thyroid was low too. Interesting enough, I got my liver enzymes and thyroid checked 1 month after surgery and they both went back into the normal range.

March 11. I got anointing from my priest Fr. T. It is important to get anointing of the sick before a major surgery as a Catholic. 

The whole week before my ileostomy surgery, I started the colon prep. Because of the nature of my surgery, my surgeon wanted my colon as cleaned out as possible. A loop ileostomy essentially is pulling the small intestine through the abdomen and the food waste exists through this hole into an ostomy bag attached to the skin.  The colon will still be sitting inside me, but nothing will move through it. 

A loop ileostomy, it’s quite fascinating! Essentially for diseases like colitis, a loop ileostomy can be preformed and after a period of time goes by, the diseased colon heals, and two ends of the intestine can be stitched back up so in the end you don’t loose any part of your intestine.

Colonic inertia isn’t something that can heal overtime, but knowing this about the loop ileostomy goes to show that this step is less invasive compared to taking the whole colon out right away. In my case, the loop ileostomy is used as a “final-test” to prove 100% if my colon is really the culprit and is paralyzed. If it is paralyzed, then I will just have my colon taken out in about a year. My surgeon (Dr. B) said we would know right away how my digestive system works without a colon, because my small intestine will empty into my bag all on its own and pretty quickly. 

For the loop ileostomy, an incision will be made 2/3 of the way through a section of the small intestine. Both ends will be pulled through into an opening of my abdominal wall to create a stoma. Essentially I will have two holes, but food only comes out through the hole that is connected to my stomach and the majority of my small intestine. The other hole, which is much smaller and inactive is connected to the 5 feet of colon that is paralyzed. So my colon will just be sitting inside my body unused. Essentially this is safe for a year, as long as the sitting colon doesn’t get diseased. Its not common, but it’s always a possibility with an inactive organ

I am a natural planner, so I was very intentional each day the week before my surgery to stick to the liquid diet, medications and enemas. I did a lot of planning for after surgery as well. I stocked up on juices, vegetable broth, tomato soup, baby food pouches, plain proteins (like canned tuna), baby food pouches, and anything that sounded good on the low residue diet. I got cases of electrolyte drinks for after surgery as well as this stevia sweetened electrolyte powder. I was told with an ostomy, I will loose electrolytes faster because my colon will be bypassed. The biggest preparation was to search for the best and most waterproof mattress covers for the so called ostomy “explosions” I read about. I wasn’t quite sure how prepared I needed my bed to be, so I bought a few covers from linen spa (and thankfully they still are holding up!). I cleaned out the cabinets in my bathroom to make room for the many boxes of ostomy supplies. I watched several youtube videos about other people who have an ostomy and found a ton of educational videos and articles on Hollisters website. Changing an ostomy bag was foreign, but the videos helped to expose me to what I was in for. I also joined a big ostomy facebook group, and searched and read some posts about what to expect after surgery. What did it tell you.. I like to be prepared! 

Like I mentioned, since my colon will just be sitting inside me for a year, I wanted to make sure everything was out before surgery! The plan that Dr. B created for me was for a thorough clean out. For those of you interested in the exact details of my prep, here it is! I was to do an enema, a colonoscopy gallon bowel prep and doucolax tablets 3 days before surgery. 2 days before surgery I was to start only on clear liquids. 1 day before surgery I was to combine the instructions of the gallon bowel prep with clear liquids. Thankfully this plan worked, but it was the night before surgery before anything got moving (that is just proof how inactive my colon was). So I got about 1 hour of sleep that night between all the bathroom visits. I was too excited though for this life changing surgery that sleep didn’t matter. Anyways, I was going to be under general anesthesia soon enough and can sleep then. 

May 13 2019. Today finally is here! I was anxiously excited and thought how this day could change my whole life around. This could be the fix I had always dreamed of. 7 years ago I got sick around this time of year, so weak, that I barely made it to walk across the stage at my high school graduation. God had a plan for my life though and if it wasn’t for everything I have gone through, I wouldn’t be the same person. In Gods eyes, 7 is the number of perfection. I remembered that, as well as God’s promise to me that someday I would be better. “Could today really be the day?”, I thought to myself. Given that it was the feast day of Our Lady of Fatima, I knew a miracle was going to happen. I now look back and can clearly see that all the prayers being said from all my relatives and friends, really were heard. 

6:00 am. A few more bathroom trips and I wiped my body down with the specialty surgical wipes my hospital provided for me to sterilize my skin with. Last night I showered with an antibacterial soap (Dial brand) as well. 

8:00 am. My hospital bag was packed, my colon was thoroughly cleaned and my family was along side of me. We arrived at the Methodist hospital in St. Louis Park at 9:00am and got checked into “Surgery admissions”. I felt like I was a pro at swiftly answering the yes/no questions, filling out forms and knowing where to go. I like the atmosphere of hospitals, partly because I love learning about the human body and medicine. Hospitals are familiar now, and I fully trusted my surgeon and his team to cut open my colon today. 

9:30 am. I am checked into the surgical preparation wing and given the room in the corner that had “curtain” walls, so each patient had privacy. I am given a belongings bag and get dressed in their hospital gown. They slip on those bootie socks and start to go over my medications and allergies. Since I have a local anesthetic allergy, I suggested we skip the pelvic block Dr. B typically uses with colon surgery patients. I assured them that I would be ok and even suggested we swap out the narcotics afterwards for iv tylenol. I have a higher pain threshold and remember with both sinus surgeries, never needing pain meds. I don’t get numbing medication at the dentist and with both my colonoscopy and endoscopy, I opted them being unmedicated. The one time I did take a strong pain med, it stopped my whole digestive system and caused vomiting for days. Plus, pain is unfortunately something I have just learned to cope with.

Deciding this was beyond my nurse, so she paged the anesthesiologist. After talking with me for a few minutes, and telling him everything I listed above, he too was comfortable with general anesthesia and just the typical meds used in the OR. I brought along certified gluten free tylenol, naproxen, and ibuprofen (target brand is labeled glute free), just incase the nurse suggested it after surgery during recovery. 

10:00 am. My mom, dad and sister were brought to the room and we all squeezed together in there. Of course we had to facetime my older sister and niece (because I guess we needed the whole family to wish me farewell. My brother had just gotten home from his mission trip and we were eagerly awaiting him to get to the hospital. The IV was placed and they had to try at least 4 times, which is common for my veins. I am fascinated by nursing and watch them intently as the nurses try to place the IV. Eventually they got it and I was reassuring the other nurses that my veins are tough, and they did a good job trying. I was started on IV flagyl and ciprofloxacin for a 1x dose which is needed before this type of colon surgery. I was then started on the IV fluids as well. I think I got up to go use the restroom 5x within those 2 hours of waiting because of all the liquids and nervousness. 

12:00 pm. Dr. B finally comes walking into my room. He smiles big seeing my whole family sitting squished up beside my bed. I am pretty lucky to have their support! He goes over the plan one last time of what we are doing. A loop ileostomy for colonic inertia. He trusted my decision for minimal pain management and agreed due to my motility issue, the iv tylenol is best. The last thing I want is an ileus after surgery (which is quite common).

I am lucky to have a surgical team who trusts me and takes what I say seriously as well. I like to go into big things like this well prepared and informed, and I think they could tell and appreciated I knew what I was talking about. It’s not everyday my surgeon gets a case where the patient is excited about surgery. But that was me, I was excited and hopeful. I knew today my body was going to find relief and it was the beginning of health again. Dr. B looks again at both potential stoma markings on my stomach. I pointed to the lower one and said this is the one I like and could live with forever. He agreed, that was an ideal spot and said if my intestine lines up right, he will definitely use that spot. Things were all set, but first he said lunch was necessary so he wasn’t hungry operating. 

12:45 pm. My brother shows up! Phew, what incredible timing! Not a minute later, the OR nurses come to wheel me away and push the first round of pre-anesthesia. I only remember the goodbye hugs and then making it through those initial doors. I guess I was also tired from not sleeping much, but those meds are strong. 

It was roughly a 2 hour surgery and my family was in the waiting room, waiting for me. I was in the recovery unit, where you are usually taken after surgery. Dr. B finished earlier then expected and I woke up pretty quick from anesthesia. I think the first thing I remembered was waking up and reaching down to my stomach. I felt a crinkle of the ostomy bag beneath my gown. The biggest question I had was “where did he place the stoma?” I am pretty particular with clothes and actually don’t typically wear watches or accessories because I find them bothersome. I figured this ostomy bag was going to be bothersome, but if it was placed closely to my bellybutton and more so in the center of my body, I was less likely to knock it with things I carry.

4:00 pm. I was wheeled up to my room on floor 4 East. I was unusually alert for just having surgery, but that is pretty typical from my wisdom teeth and sinus surgery as well. As soon as I was in my room, I lifted up my gown and saw my ileostomy for the first time. I had on a clear 1 piece bag and it already had about 1/2 cup of dark green bile sitting at the bottom of the bag. I smiled so big looking down because Dr. B placed it exactly on the spot I requested. But the best news was the relief I felt. Deep down I felt good, I knew the surgery had successfully worked. Thank you God! There wasn’t any pain either, even after being cut into. Compared to the pain I had lived with, this was minuscule.

The nurse was asking if I was ready to see my family. I said yes and about 10 minutes later my mom shows up. I guess the others went home to get something to eat because I wasn’t suppose to wake up so soon. My mom could tell something deep down in my body was healed. Her mommas heart was happy that God finally answered her life long prayer. She has seen the depths of my pain, so its only fitting she sees the miracle that had taken place, first. 

I waited for this moment for as long as I can remember. My mom and I watched my stoma through the transparent pouch as it moved and spit out a bile substance. I had no food in my system, but my body was so very ready to work and start pushing out anything that has been stagnant. My body is being given the chance to work. Surgery is pretty awesome in my case. I thank God every day for Dr. B and that he had the skill and wisdom to do this surgery and give me my life back. 

My younger sister flew in from Illinois to stay with me during my recovery in the hospital. She has an innate joy in all circumstances and so I wanted her company during this adjustment period. Honestly I wasn’t in as much pain as I thought, but my legs, arms and face felt considerably numb (like you sat on your leg too long). This was due to the general anesthesia and the position they laid me on in the operating room. I was finally able to drink clear liquids and water. My sister propped up a cot to sleep on and pulled out her laptop to play greys anatomy. She was so flexible and the nurses just worked around us to do vitals and draw blood, etc.

11:40 pm. I was awake and anxious to get my body moving. My legs hurt from being numb, so I pulled my body out of bed and slowly made it to the door. I realized I should have called the nurse, but honestly I felt ok moving. I was nervous to see what it feels like to move with my ileostomy. I made slow steps down the quiet hallway at midnight. I was in awe as my stomach was growling and gas bubbles were quickly moving through and out the stoma. It was noisy, but felt amazing. My intestine were awake and alive feeling. I will always remember this relief and it felt like a rush of fresh air was moving through my body, just like I used to feel running around as a young kid. Before, my colon was stopping me up so much, I would honesty never pas gas and walking was miserable because the gas would just build up in my belly until it was too uncomfortable to move due to my stomach swelling. Turns out my small intestine were active, but my colon was just the big stopper. 

I stayed in the hospital from Monday May 13 to Thursday May 16. 3 nights in the hospital was all I needed! 

Tuesday May 14. I was awoken several times at 3 am for blood draws, then 5 am vitals and then at 6 am to give me my second dose of IV tylenol (this was my request instead of narcotics because of their potential to slow down the bowel).

8:00 am. Dr. B comes in the room saying “wake up!” Ha. I love how easy going and kind my surgeon is. He sat down at my bedside as I slowly open my eyes and he asks to take a look at the stoma. He pulls out his little flashlight to shine through the ostomy bag. “Things look good and the stoma is a nice size!” He explained that the rubber ring is a bridge used to keep the stoma above the surface to help it heal properly above the skin level. 

Since the output was continuous, he allowed me to progress from “clear liquids” to the “full liquid” diet. Not everyone gets so lucky to have output from their stoma right away, so Dr. B and I were pretty happy my small intestine were moving so rapidly! 

10:00 am. I drank a fizzy potassium drink because my levels were slightly low (very common after bowel surgery). My mom and dad then brought green juices and a fresh smoothie from a juice bar down the street. That was such a treat and exactly what I wanted! Right away, my stoma became more active and over the next 6 hours, the ostomy bag was filling up and I learned to empty it by myself. I also had alot of gas from surgery as they pump gas inside to get a better view of manipulating and cutting the intestine. I even has a referring gas pain up into my shoulder! To remedy the gas, I walked about 6 times up and down the hallways that day. It was a full day and I didn’t need anymore tylenol because the pain was manageable. 

May 15, Wednesday. In the morning, Dr. B stopped by to see how I was. I truly felt cared for by my surgeon. He always checks on me and asks good questions! Because I was doing so well and small intestine and stoma were moving and pushing fluids through, it was time to try food off the low residue diet. I choose 2 scrambled eggs and a banana. I managed to eat about 3/4 and felt fine after. I got up to walk several times again to help the food move through and it was awesome to see my body functioning and rewarding to empty the ostomy bag, knowing my body is working.

Around late afternoon, I met the ostomy nurse, Julie, for the first bag change. She brought all the Hollister ostomy supplies and walked me through each step to change my own ostomy bag. She carefully cleaned around the stoma and I asked to help with everything, because I would learn best doing it, instead of watching it being done. It was a bit of a shock to see a big red piece of flesh sticking out of my stomach. But I knew why I had it and I was accepting of this change. I think I was more fascinated than anything and couldn’t believe my intestine was sticking outside my body! 

By wednesday evening, I was getting the hang of the hospital life. I checked off all I needed to, to be discharged. I walked, emptied the ostomy bag, changed the ostomy bag, ate solid food, and my pain was under control. I was thankful I didn’t have an ileus and that my intestine “woke up” quickly.

Thursday May 16. Dr. B stopped by at around 7:45 am and asks how the eating and bag change went yesterday? I told him, it all went ok and I am still incredibly happy we decided to do this loop ileostomy surgery. I know it is going to change my life. I think he liked to hear that I am hopeful. He asked me to eat another meal today (or 2 if I can manage) and then I could go home this evening! I was pretty excited, but also nervous to get out in the real world with my intestine being this way. Around 4:00 pm the nurse came in with my discharged papers and explained the recovery process. I would be weak for the next few weeks and probably need some assistance. My family was glad to help! Dr. B stopped in to say “goodbye” and told me to come see him in 2 weeks, in the clinic, to get the rubber bridge taken out and make sure everything is going smoothly. And that was it, I was free to go home and start my life with my new digestive system. A miracle sure did occur on May 13, just like I had always prayed for.

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Posted By 4 Comments
07.26.2019

Part 1: Colonic Inertia

The only way is through it. Breath after breath. Day after day. I told myself I would eventually get through the depths of pain. I remember in February of 2019 I was deep in a pain I never thought would go. I walked right into it, scared and uncertain, but confident in God. 

I shuffled my way down the icy steps and focused intently to avoid slipping. Because slipping on ice was the last thing I needed right now. It was my “day 0 x-ray” of my colon. The day I have been dreading since November when my gastroenterologist recommend the Sitz marker test. I opened the car door and couldn’t even force a smile. My belly hurt badly and was already distended from not going to the bathroom for 7 days. For this test I had to stop all my motility and laxative medications I was placed on to keep my body functioning. I got into the clinic and rattled off my name and birthday to the x-ray technician. “Happy birthday” she said and smiled as she placed the radioactive pill full of 24 little rings into my palm. “Just swallow it and we can take the picture” she said. So I did just that and afterwards, got up to leave. “Do you want to see it?” she asked as she pointed to the screen? My attention was sparked, of course I wanted to see an x-ray of my intestine. I gazed at the image and my eyes scanned over all the dark areas. After 7 days of being instructed to eat, and take no medication, there was alot of food being packed into my intestine, without any movement out. My first thought after seeing the impacted intestine, “ouch”, no wonder why I feel so miserable. It was the first time I was actually seeing the reality of what I live each day. 

I never thought on my 25th birthday, I would be driving to a test that was required to prove how constipated my body can really get. I was scared to really know the honest truth as to what my body could not do. Little did I know, that this test was the start of a diagnosis that eventually led me to get a surgery that would work. But at the time, all I could do was drive home and shrivel up in pain with my heating pads and wish for the test to be over. Honest truth. I wished it wasn’t my birthday and that I wasn’t 25 and battling such a debilitating disease. 

After my colonoscopy in December that confirmed I had a redundant colon and lack of peristalsis in my colon, it was time to go into more in-depth testing. That is why my gastroenterologist recommended the Sitz marker test. I was just “done” with medical testing. I wanted to just live my life beyond the countless doctors appointments I had each week. But I logically thought about it and the last time I did comprehensive gastrointestinal testing was back in 2017 when I did the long radioactive test to diagnose small intestinal dysmotility. Thinking back, I know that deep down, my worst fear was finding that my digestive system is just paralyzed and there isn’t anything more that can be done for small intestinal dysmotility. But I played the “good patient” role and just let me doctor run any and all tests. Even if it was going to be painful, I agreed because I trusted him and I trusted God’s plan. And yes this Sitz Marker test was hard, but I am living to tell the story. Sometimes the scariest part is facing the truth. 

The sitz marker test continued. Day 3, I had an x-ray and then again on day 5. I remember day 5 clearly, despite feeling like a walking tank of poop. My dad had to drive me, because I was in so much pain, I was hunched over and could barley move. It had been 2 weeks since my last bowel movement. The technician didn’t allow me to see the x-ray on day 3. I secretly hoped that I had the nicer technician from day 0 today, so I could see my scan. I was ready to see how impacted my colon really was. 

Before I walked into my appointment, I looked at my dad and tears started rolling down my face. He knew I had been in pain these weeks, and today was no different. He listened as I told him what the options were if this test came back and there was no movement. I brought up the “worst case senecio” to see what he thought. “What if I need my colon taken out and I get a bag.. you know an ostomy bag.” He looked at me and said, it will be ok and honestly it will probably be more than ok.” His prediction was that I may actually get better with a surgery like that. His good friend got an ostomy bag and lived a completely normal life. The ostomy bag actually was a good addition. 

I took his words of encouragement and tucked them in the front of my mind and walked into my last scan. I did get the nicer technician and she eagerly showed me my day 5 scan. She kept saying how sorry she was and pointed out the rings scattered throughout my colon. The food was just compacting as each meal was piled on the other. The rings piled in the colon were the proof of my new diagnosis of colonic inertia. Colonic Inertia is the technical term for a paralyzed colon.

If you look closely in my x ray below, you can see the majority of the rings are stuck in the ascending colon (the portion of the colon closest to the small intestine). Few made it to the transverse colon and a few trickled down into the descending colon. All 5 feet of my colon was paralyzed and the only thing pushing the rings through was the food, peristalsis wasn’t happening in my colon anymore.

7 years ago I started this blog. I was 18 years old and just starting to come to grips with this gutsy way of living. Unraveling your life to the world is a scary and vulnerable thing. At times, I wanted to avoid reality and pretend its all ok. My body was not ok and lying to myself only made the problem worse. So writing because a way to process life’s hard pains. Many of my pains were physical, but that did not mean I didn’t get sad or upset at what life was giving to me. This period in my life was a hard one to comes to grip with. I never thought my colon would actually stop working and become completely paralyzed. I never thought I would be the one on the surgery operating table getting colon surgery. Even 6 months later, writing this, I am struggling to finding the words because the pain runs so deep. 

December 2018 I had to stop working at the clinic all together because my body was getting very sick. Not only was my colon paralyzed, but that constipation and line of meds was taking a more systematic toll. My liver had increasing levels of elevated enzymes, my thyroid was under functioning, my thinking was foggy and my body was retaining excessive amounts of fluid to buffer the toxic buildup inside my colon. After that sitz marker test in February, I was allowed to go back on the regimen of medications to move my bowels. But unfortunately my body did not respond, even with the highest doses of laxatives and combining them. I went the whole month of February not having a bowel movement. It was pure misery and my gastroenterologist was afraid of a colon blockage so he prescribed 3 gallons of colonoscopy prep and after 29 days, I finally slowly begin to empty my colon. I’m not going to sugar coat this, it was a time of complete misery. I passed out from the pain and electrolyte shock that week several times, and spent countless nights on the bathroom floor because I was in such pain. 

March rolled in and I continued on that regime of 3 colonoscopy gallons a week. I was in such a fog, I barely could get out of the house. I would pick up a giant box each week at the pharmacy with my gallons of colonoscopy prep. It was embarrassing and I hated taking such powerful medications that flushed my body of essential electrolytes and bacteria, but I had no choice if I wanted to avoid a blockage. My nutrition was very limited and I was only tolerating small amounts of juices, purees or smoothies. I only could take about 5 weeks until my body started to reject the colonoscopy prep and I couldn’t keep it down anymore. Surgery was unavoidable now and clearly the next step if I wanted to live to overcome this. My gastroenterologist handed me a referral letter and the search for a colon and rectal surgeon began. 

Searching for a colon and rectal surgeon was overwhelming! The specific surgeon my gastroenterologist referred me to had a waiting list until March 30th, and I knew I could not wait that long. So I called the local hospitals around Minneapolis, read reviews and called to see their wait list. When I asked, some surgeons wouldn’t even take on my case because they didn’t deal with patients who had colonic inertia. I narrowed it down to 2 good options and scheduled an appointment with each to get their opinions. I spent a few days getting all my records from all the ER visits from the past 2 years, my countless gastroenterologist appointment notes, Mayo Clinic records and all the x rays and CT’s of my colon. After that was all over, I patiently waited until my first surgeon appointment. 

Dr. C was unfortunately not a good fit. I was super discouraged afterwards but still did the testing he required to get a more in depth picture of the function of each section of my colon. He ordered a MRI defecography at the University of Minnesota medical center, to test the functionality of my rectum and pelvic floor muscles. This would determine what surgery would be more suitable for me. 


The MRI defecography was definitely not a test I would want to redo. It’s basically a test where they do a live MRI (with the technicians watching) as you poop out radioactive gel. In simple terms, they can determine what your rectum and pelvic floor muscles are doing when you poop. 1 week later I got the results and went over them with Dr. C. He was very unspecific with his reasoning (which made me uneasy and questioned his experience with colonic inertia cases). He didn’t like the way my pelvic floor dropped or “prolapsed” due to weak muscle tone, so he said he would not do colon surgery without first doing pelvic floor surgery with a mesh. 

I got home that night and posted on the colonic inertia facebook group (I learned alot from this group and it was a great support from patients all over the world with this same condition. I highly recommend it, if you have colonic inertia). I was alerted from members that pelvic floor dysfunction function is common with people who have colonic inertia, due to the constant strain they put on those muscles with severe constipation. The specific condition I had was a pelvic floor prolapse and rectocele. The next day, I scheduled with a gynecologist in the same clinic as my family practice doctor. I wanted his opinion about this pelvic floor prolapse and if he thought the risk of having pelvic floor surgery was worth it. It’s risky given my young age and the fact that scar tissue could be a complication in planning a future family and pregnancy. He reassured me after looking at the scans that my prolapse was due to the strain/pushing of chronic constipation and it looked similar to a woman’s pelvis after pushing from a hard childbirth. He said I should get another colorectal surgeon’s opinion and in the meantime do pelvic floor therapy to retrain those muscles without needing surgery. I’m so thankful I got his opinion and went with my gut instinct to not go back to dr. C. 

Another week went by and by this time, I was headed to the second surgeon’s appointment I had scheduled. Monday morning, Dr. B. greeted my parents and I, and we sat down to evaluate and look over all my medical records and history. I had my health history easily memorized and rattled it off to my surgeon and my parents nodded in agreement.

Then there was a point where he stopped me and asked how this condition is affecting my life. I stopped silent. Usually I am very composed at appointments, despite the pain I am in. But this time was different. Tears streamed down my face and I admitted how I can barley go anywhere or participate in activities due to the pain in my stomach. I have no energy, because everything I eat just sits inside. He looks at me with compassion and my mom grabs my hand because she notices how tightly I was gripping my chair. The fear of the unknown, but mostly the fear of having no end to my suffering was surfacing. Dr. B saw it too.

He redirected my attention to the first scan he had pulled up. My eyes lit up as he pulled up each scan from over the past 3 years. I could tell, this wasn’t his first time looking at them, and I was impressed he reviewed them before my appointment today. He pointed out that yes indeed the colon was very slow or paralyzed. He agreed, my pelvic floor could use pelvic floor therapy to see how it responds before deciding between an ileostomy or the Ileorectal anastomosis (IRA) surgery. He didn’t miss anything and asked questions that no other doctor had asked before. The fact that he was more than willing to take me on as a patient, given that my case is complicated, gave me hope that he would be the one to help me. He would help me get clear answers and hopefully relief.

He went over the possibility of having the diagnosis of whole digestive motility problems. In this case, surgery on the colon would not be advised because if the small intestine is slow, then it would not help to do colon surgery. Small intestine motility unfortunately has no treatment (which I already knew). Given that my previous diagnosis was small intestine dysmotility, there was a chance that my small intestine and colon were both paralyzed. But Dr. B told me that he wanted to recheck to see if this was misdiagnosed based on improper testing. He made the decision to redo the work Mayo had done and redo a small intestine transit test. But this time, the right test, because the radioactive transit test I did 3 years ago was a research test and it didn’t have good references ranges.

He ordered whats called a small bowel follow through, which is more commonly used all over the world. I was instructed how to prepare for the x rays, so that when the small bowel follow through was done, the results would be based on just my small intestine transit time (without interference with the colon causing everything to back up). This initial surgical consult appointment ended up being almost 2 hours long and I had confidence that God had led me here. This was an answer to my prayers and I had a feeling that everything was going to work out.

I had my plan in place. First: prepare for the small bowel follow through test, take the test, and await the results. Second: redo the anorectal manometry test and based on those results, do pelvic floor biofeedback sessions. I scheduled the test later that week and prayed to God to please let Dr. B be right and Mayo Clinic be wrong with their diagnosis. I so badly wanted to be properly diagnosed and would honestly rather have a disease that had a solution, instead of one that simply didn’t. I couldn’t go on living this way. 

During the test I felt nauseous and sick to my stomach after I drank the radioactive liquid. I waited 20 min and redid an x ray, then another 20 min, then another 20 min. Suddenly the nurse came in and started to help me out of the x-ray gown. I was shocked and asked “what’s wrong?”. She said nothing is wrong, but that I’m done. My small intestine was normal at emptying after 55 min. I knew exactly that this meant Dr. B was right. Mayo clinic had misdiagnosed me with small intestine dysmotility, and now its clear I have just colonic inertia. Surgery was finally a viable option and hope was in my future! (I never in my wildest dreams would have thought I would be excited about colon surgery, but after what I have been through for years, I wanted it). 

Next up was the anorectal manometry. Based on the name, you can probably guess, this one wasn’t comfortable. It was to measure the pressure and make sure my muscles are coordinated with pushing, relaxing and defecation (pooping). The results came back, showing that my muscles were paradoxic (reversed) and I was instructed to start biofeedback as soon as possible. 

I went for 3 weeks to the pelvic floor therapy center for biofeedback. Biofeedback is basically retraining your body how to function properly. It uses sensors and a screen to visually show you what your muscles are doing and how you can control them. After the 3rd session, my therapist told me that I was a quick learner!  My rectal muscles were working very well and I had properly and successfully learned how to have normal pelvic muscle movements. She commented how once in a while, she gets patients like me, who simply just need colon surgery to get well. She handed me the discharge papers and sent me back to my surgeon. 

I got a call the week later that Dr. B had those results and wanted to see me for a recheck. The scheduler lady was shocked to find he had a cancellation for the next day. This was simply a miracle because his schedule was booked out 1 month into May. My body was worn down and very sick. I could barley get out of bed to make it to my 9am appointment, but somehow I did. I went alone this time. Dr. B walked in and asked if my parents were coming to this appointment. I told him no, because I thought this was going to be a quick recheck and that I was just going to need more tests. “Ok, let’s check to see how you are first.” He did an exam of my belly. Being only 5’1” my stomach has no room to extend when its compacted, so its very visible when I’m constipated. He pressed around lightly on my extended belly and the pain was so bad, I had tear drops running from my eyes. I hide my pain well, but he saw right through it.  

“Lets make a plan” he said. “What do you think about loop ileostomy?” My heart jumped, this is it, we are scheduling my surgery! I said “yes please, lets do it!” He smiled and nodded. Dr. B explained that even though my small intestine and pelvic floor work, doing a loop ileostomy is much less invasive than doing a full colon colectomy (removing all 5 feet of the colon). The loop ileostomy is a last test in itself to see if by bypassing my colon, my body can eliminate successfully. If the loop ileostomy works, then in 12 months I can get the colon removed and the ileorectal anastomosis surgery (reattaching the small intestine to the last inches of rectum muscle, so no stony bag). Or I could simply choose an end ileostomy which is keeping the stoma/ostomy bag but taking out the unneeded colon (colectomy). It was my choice and we would revisit these ideas after I recover fully from this first surgery.

I fully trusted his plan and we marked my surgery date in his book May 13. This just so happens to be the feast day of Our Lady of Fatima too! I was to see him and the stoma nurse the week before surgery to get my stoma incisions marked and to go over my plan for surgery prep (a.k.a. getting my colon as clean as possible). As I left, I couldn’t stop smiling, knowing that I am being given this chance. My days of painful medical testing are over, we have a clear answer and a solution. I have been waiting for this day for as long as I can remember. A chance to remove a diseased part of my body and finally be healthy and be given new life. God is blessing me with this second chance. 

Part 2: Surgery 

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08.25.2018

Remedies for Intestinal Dysmotility

Intestinal dysmotility definition

First things first, what exactly is “intestinal dysmotility?” Dysmotility is a condition in which muscles of the digestive system become impaired and changes in the speed, strength or coordination in the digestive organs occurs. In the normal small intestine, liquefied food and secretions including digestive enzymes are pushed onwards by waves of muscular contraction. source

Usually when we get a diagnosis, our next question is, “what is the cure?” But unfortunately, not everything in life is that simple. According to popular medical sources “Unfortunately, many causes of dysmotility cannot be cured, and symptomatic treatment is offered.”

Personal experience

Last year I was diagnosed with specifically small intestine dysmotility. That is just one type of dysmotility a person can have. There is also dysmotility of the stomach which is called gastroparesis. As well as dysmotility of the large bowel, which usually results in chronic constipation.  If a gastroenterologist thinks you may have slowed intestinal motility, they can do a gastric emptying scan (GES) which involves eating a radioactive meal (usually eggs) and then tracking and measuring the amount of time it takes to empty (4-6 hours is usually measured).

The Mayo clinic came up with an even longer lasting test that included tracking the radioactive isotope pill past 24 hours and tracking through the entire digestive tract. This is very helpful for cases where small intestine dysmotility is suspected. For dysmotility in the colon an anal manometry can also measure the function of the colon muscles. I personally did the long 24 hour GES, and upper endoscopy, and an anal manometry.

There are many reasons why someone could have dysmotility in their digestive tract. I think all of us who suffer from one of these dysmotility conditions, can agree that it can be really uncomfortable and life altering.  Intestinal dysmotility can interfere with daily life and requires trials of diets, medications and therapies. I am no expert, but I have a few tricks that work for me and I continue to search and learn. I’m always willing to try something if it has potential of helping. Sometimes we just can’t settle with a single medication and the words “I’m sorry, there is nothing more you can do.” Those words almost prompt me to search even harder, because I don’t give up!

What treatments are available?

The treatments my local gastroenterologist and Mayo Clinic doctors provided were pretty standard. There are medications that can treat dysmotility of the stomach (example: Reglan or erythromycin) and the colon (example: Linzess or other constipation medications). Small intestine dysmotility has little research because it requires the extra time to track through the small intestine that most clinics don’t have access to do. Unfortunately, not many medical journals are published yet about small intestine dysmotility and it still has yet to make it in the major medical text books. Surprisingly old medical journals still prescribe a dangerous medication that was available in 1998.

Whats the root?

Some doctors at Mayo clinic wonder if it could have an autoimmune component. It is common for people with autonomic neuropathy to have digestive complaints or even dysmotility because the gut is an autonomic function of the body. If there is an underlying cause, its also good and necessary to treat that because it’s possible the digestive motility can get better.

Mine has an autonomic neuropathy root and each month as I work on therapies and treatments for this condition, surprisingly my digestive system sees improvement. I share details about my initial diagnosis from Mayo here. When my blood pressure, heart rate and vestibular system started to re-balance, my body got into a better “rest-and-digest” mode instead of overacting like it typically does when my autonomic system flares. Even though I have seen improvements since my initial diagnosis, I still need to routinely keep up with my at home treatments mentioned in this post, to ensure my intestinal tract is moving. Flare ups do happen after a stress like an infection or even a big life change, so that is something I am learning to handle as life goes on.

Infections

Doctors can typically asses for infections in the gut like h. pylori (read my post here), SIBO, candida, etc. Using diet, enzymes, herbals and sometimes medications to eradicate these infections can actually help your gut motility as well. Here is the reasoning behind obtaining infections in a motility disorder: “Small bowel motility disorders also predispose to the development of SIBO, because bacteria may not be effectively swept from the proximal bowel into the colon.” source 

“Normal GI motility involves a complex, tightly coordinated series of events designed to move material through the GI tract. During periods of fasting, a migrating motor complex (MMC) develops approximately every 90-120 minutes to sweep residual debris through the GI tract. Several studies have demonstrated that abnormalities in the MMC may predispose to the development of SIBO.” source

Food choices

My doctors have come up with the idea to target the stomach and colon because there are not yet treatments available specifically to target the small intestine. The small intestine muscles are important because that segment of your gut is responsible for absorbing nutrients. Some people need a feeding tube if their dymotility does not get better, so they can absorb their nutrients and function. Surprisingly, I avoided this intervention but instead tried many things to improve my dysmotility and eat food. There have been times where “liquids only” were the best option and my doctors went back and forth helping me choose between chewing food and nutritional drinks/smoothies. The cleanest supplement drink I have found is from Kate Farms. If you design your own nutritional smoothie, adding easily digestible fats, vitamins and proteins becomes necessary.

Chewing can help kick start peristalsis and facilitates enzyme and saliva production. Choosing foods that empty faster (high water content foods: fruits, vegetables and carbs) can make a big difference in the speed of your motility. Proteins take longer to digest and then fats take the longest. Here is a guide line for the digestion time of each food. Working with a nutritionist or tracking the motility of your food choices is a good idea so you can work out a good long term eating plan without causing problems or leaving you with nutritional deficiencies. Having adequate stores of minerals (like magnesium) and electrolytes is important for nerve connections and muscle functions involved in peristalsis. I suggest nunn tablets, electrolyte powder, natural sea salt for when I need an electrolyte boost. Keeping hydrated is also very important for intestinal motility.

Colon cleaning

Keeping the colon clean is a must for proper motility higher up in the digestive tract (its all connected remember). There have been times where I was constipated and could not keep down food because the pressure system in my intestines was too intense. Exercise can help loosen things up, sometimes isn’t enough or can be hard on the system for someone with autonomic neuropathy so it may not help constipation.

Enemas: Enemas (learn how to do them here) can be an easy at home solution to quickly clean out the lower portion of your bowel. Even though it cannot reach very high up into the intestines, the water stimulates nerves in the rectum and sigmoid, which will signal the colon muscles to contract. Filtered water, an enema kit and a bathroom is all you need! You can choose from a stainless steel bucket, a plastic bucket or a hanging silicone bag.

Colonics: A colonic or “colon hydrotherapy” can efficiently clean out the colon with water to help facilitate motility higher up in the intestines. A colonic can actually irrigate purified water into almost the whole length of large intestine. A trained therapist can use quick light pressure releases and alternate the water temperature, along with abdominal massage to help your body release fecal matter. Colonics are known to tone and retain your colon muscles, which will help your peristalsis contractions. Colonics were a irreplaceable therapy I used over the years to help give my colon proper muscle tone and overtime my peristalsis became stronger and more functional.

Peristeen: If you can get a diagnosis for a “neurologic bowel“, that may open up a new window for a colon irrigation device that can reach higher up into the colon called Peristeen. Similar to an enema, it pushes water into the lower colon and triggers a bowel release. The difference comes in the design of the Peristeen device, because it uses a small FDA grade silicone ballon that you can inflate and deflate. You insert the catheter (a trained Peristeen therapist will determine the right inflation size for you) and then inflate the balloon once it is inside the rectum. This creates a light “seal” that insures the water can slowly build up higher until you need to release the water along with the feces. If you are interested, the company is very knowledgeable and can possibly help you find a doctor to give the initial diagnosis and then training for this take-home therapy.

Medications and herbs

Like I mentioned earlier, medications can be life saving for those of us with intestinal dysmotility. Rgalan and erythromycin loose effectiveness or have bad side affects, so they are best used periodically. Laxative medications are usually better than stool bulking agents, because you want to keep things moving (not make things bigger to move through).

Suppositories can help too soften the stool, but also can signal the colon to contract and start peristalsis movement.  HCL, enzymes, sour foods all have the natural ability to kick start digestion in the mouth or stomach. Herbs like senna, cascara sagrada, cats claw, aleo vera, ginger, or rhubarb can help contipation as well. Smooth move tea is a powerful little tea you can drink that can help ease symptoms too.

Remember that the whole intestinal track is all connected so targeting the stomach and colon will help the small intestine move. Probiotics can help motility if you get the right strain to balance your colon bacteria. For me it has been changing it up over the years and you can see what I have tried on my supplements page. Herbals and diet can be helpful for keeping yeast in check too, which can lead to considerable bloating and inflammation.

Colon massage

One thing I took extra interest in when I went to colonic school, was the techniques used to massage the colon. You really have to know the segments of the intestine to properly massage in the correct direction. It can be pretty simple if you look at a chart and work your way massaging the stomach, by following the natural movement of the colon structure.

Typically you start on the right side (by you illeocecal valve and cecum) and go up the ascending colon, then across the transverse colon and down again (ending on your left side in the sigmoid). Its easiest to use the base of your palm to have enough pressure while massaging the belly along the colon structure. Since your colon is made up of rounded like connecting pouches (called a haustra), its beneficial to massage over the areas that seem “harder” with circular movements pressing down. You can massage over a t-shirt or you can apply a non toxic lotion or food grade oil to get more movement with the massage. An drop of digest oil massaged on the skin can help relax the muscles and tissues as well.

Visceral manipulation

According to the Barral institute “Visceral Manipulation (VM) was developed by world-renowned French Osteopath and Physical Therapist Jean-Pierre Barral. Comparative studies found Visceral Manipulation beneficial for various Digestive Disorders: Bloating and Constipation, Nausea and Acid Reflux, GERD, Swallowing Dysfunctions.” You can watch this YouTube video for a good easy explanation on Visceral Manipulation.

“In Visceral Manipulation, individual structures are treated with specific techniques to improve mobility around that structure and motility within.” source

I was recently referred by my doctor and a pelvic floor specialist to try visceral manipulation. She found my abdominal muscles have separated slightly to compensate for the digestive ailments I suffer with. I am looking forward to seeing if the manipulation helps my digestive system and motility and will keep you updated.

Pelvic floor therapy was helpful, but due to the nature of my motility problem, I need work higher up in the abdominal region. Pelivic floor therapy is useful for mainly constipation and colon symptoms. Though Visceral manipulation can help this too, and I found a fascinating study about it helping constipation in a woman here.

At home tools

Keeping up with daily at home therapies is essential to keep my intestinal tract moving. I notice if I don’t do at least one of these things daily, my abdominal region gets swollen and things inside get stagnant. Of course everyone has a different body and you will find your own preference to ease symptoms overtime. If I am having a flare up, I make it a point to do several at home therapies during the day to keep ontop of the pain and discomfort.

Every night I sleep with a heating pad wrapped over my abdominal region. Yes every single night and I don’t go without it. The heat relaxes the muscles and penetrates through to eventually relax the intestines. I like this heating pad because its long enough and wide enough to wrap around my whole abdominal region. Another option is using a hot water bottle and place it over a specific area on your belly. If you want to take it to the next step, you can do a castor oil pack which will increase blood flow to the intestinal region, decrease inflammation and promote lymph flow. Here is the castor oil and wool flannel I use.

Pressure is an important tool when the intestines are struggling to function. I find that an electric massager is one of the best remedies when my abdomen physically hurts due to lack of intestinal motility. It is not only calming, but very efficient and gives the right amount of movement and pressure to get things moving almost every time. I find that a massager works better than self colon massage because you are more focused and relaxed. I also use a weighted blanket, but actually I specifically use a lap pad size, which I simply lay across my abdominal region. I find it calms my anxiousness I typically get when I am in pain, but the pressure also helps my abdomen relax the muscles and prevents subconscious tightening of stomach muscles. The more tense we are, the harder it is for our rest-and-digest mode to kick in. Any little thing helps.

Another tool I use for muscle tightness and pain is an EMS/TENS unit. It’s simple and you can put it on a low pulsating frequency to stimulate the muscles and nerves. The EMS (electronic muscle stimulation) mode is used to help inflammation and swelling in a specific area. The TENS (transcutaneous electrical nerve stimulation) mode can give relief for chronic pain by sending comforting impulses to the nerves to eliminate pain you feel. I place the sticky pads on my abdomen area and let the stimulation do its work.

We can’t forget about posture and breathing! I always try to take full “belly breaths” to calm by body and promote digestion. There is research to support that deep breathing works for digestion. “The “fight or flight” response causes blood to move from the gut to the larger muscles, which interferes with digestion, weakens the immune system and increases inflammation.” It’s also important to understand the gut-brain-connection and how our emotions and stress play a role in our digestion and gut motility. Lastly, focusing on your posture on the potty is essential for your colon to properly align and release the waste you have inside. This is the squatty potty I use.

That’s all I have for now, and I hope you find something that works to help ease your symptoms of intestinal dysmotility.

 

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