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.

disclosure 3

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.

disclosure 3

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 

disclosure 3

Show up

Every time the thought pops up that I should write more about my story, I push it aside. I do this often now, daily actually. Partly because I do not feel like this season of my life is going to speak life or its even worthy of sharing. But when something is redundant in my life, I take hint that actually God is the one nudging me. God doesn’t want me to worry about the responses I will get or the lack of motivation. He simply just asks me to show up, as I am, and speak/write.  Even if its hard, the truth is always best. 

As summer came to a close, I delve right into getting my clinical hours done to become a certified colon hydrotherapist. I trained under 2 clinics here in the Minneapolis/St. Paul area and found a good fit for a potential spot as a therapist after training. 

When I fist started training in the field of colon hydrotherapy, I was unsure how I would ever find a job as a colon hydrotherapist, being so young. But I had faith. When I moved to Boulder in 2016, I originally had planned on going to the colon hydrotherapy school out there. To my disappointment, the teacher didn’t think I would get a job in the field, if I wasn’t willing to set up my own business. So those words always clung in my conscience as I progressed through my training this summer. I would frequently worry about finding a position as a therapist, but eventually realized that indeed God would provide. 

After each session with a client, I felt a sense of purpose. I was joyful that God is giving me the strength to help people feel better and heal their bodies naturally. As you know, I am passionate about gut health, so physically helping people cleanse their guts of toxins, is right up my alley. I guess you can say I was made to do this. It was my goal to make people feel calm and comfortable. I was using my hands to carefully massage the stomach during a colonic session and prayed that God would guide my hands to help the gut relax and do its job. 

I remember the day as I drove to the clinic that something was off. I was slightly shaky and pushed through the few appointments I has scheduled. After the sessions as I was cleaning up the room, I noticed my calf muscles were weak and had “the weak knee” feeling. Then the familiar flash in the corner of my eye surfaced. Its the “seeing stars” experience that is all too common with a POTS disorder. Thats funny, I wondered why my body was suddenly showing POTS symptoms once again. I had worked  my way to this point in my life, the fear of watching these symptoms surfaced again really shook me to the core. Its been gradual progress over 2 years of physical therapy and medications to calm my autonomic neuropathy. 

My will is strong and my heart is big. So despite these symptoms which began to surface daily, I continued to make the hour drive each way to go train at the colonic clinic. I did my best to keep my nutrition and fluids up, but unfortunately that didn’t reverse the POTS symptoms. To be honest, I put physical therapy on hold because all my energy and time went into this colonic training. I was driven and love to put my-all into whats in front of me. I thought I was ok enough to not go consistently, but I guess my body was proving me wrong. 

In September, I had some persistent face pain near the parotid gland. I went to see my doctor several times and she was vigilant and we treated it accordingly, knowing I am prone to parotid infections. Even after an ER visit, and several follow up exams, it was unclear what was causing the paranoid pain and swelling. Weeks went by and deep down I had a gut feeling something was wrong. 

On Sept 30, I decided to try out a few brazil nuts, because I was tolerating ground pumpkin seeds and sunflower seed butter fairly well. After 10 min I felt like my blood pressure was dropping very quickly, I was starting to feel like things didn’t make much sense. Should I drink some water? Should I call for help.. nah, I’m probably just tired. As I walked past the mirror, I noticed how pale I had become and how big my lips were getting. The shock was setting in and I felt my throat muscles tightening. Oh my gosh, this is the real deal I thought, this is anaphylactic shock. I called for my mom, she quickly called 911 and then sat with me in the corner of the room as I was slowly suffocating. I was doing this rocking motion, trying to stay alert until the the paramedics came. I didn’t have an epi pen. Thank goodness the hospital is only 5 min away, because a few more min and I would have lost oxygen. They rushed in and my parents explained my simple story. I ate brazil nuts (I have eaten them before and this never happened) and now I am in anaphylactic shock. My bowels were on fire, and I was fighting to hold it in. I asked if I could PLEASE just use the toilet, but they insisted I didn’t have time and they continued to inject medication into my system to stop the reaction. 

As scary as this was,  I survived through it. God is good and He wants me to share even these moments with you. In the depths of pain and suffering, Gods hand is still close by. Actually God is even more near when these moments consume us.

God is our refuge and strength, an ever-present help in trouble” Psalm 46:1

As I was rushed to the hospital, I am thinking to myself how grateful I am for the past few days. The day before was a dream come true as I had hiked up the bluff with my young adult group and our priest said mass ontop of the bluff. Glorifying God in nature is a beautiful thing. But even now, God was showing up for me. My parents and sister stuck by me, the nurses and doctors worked diligently to get me back to stable. As I tiptoed near the ledge of death, feeling hopeless and scared, I knew God had more planned for me. That thought alone, was all I needed to get me through. 

I spent a day in the hospital suffering the most pain I have yet experience in my life (and I have a high pain threshold. For example: I get my teeth worked on without anesthetic and recently did un medicated endoscopy and colonoscopy). I felt significantly weaker and the pit in my stomach that “something is off” just grew bigger. The nurses and doctors had a feeling something was underlying that caused my immune system to react to a food I have eaten several times before. They advised I get to Mayo yet again to figure out if I had an infection in my face (due to my persistent facial pain). I ended up getting into my ENT at Mayo and she suggested a CT with contrast to see what is wrong. As we waited a few days over the weekend for the results, my body was starting to feel very achy and a bright red rash appeared on my face and was spreading down my neck. I drove myself to the ER and immediately the dr hooked me up with a dose of IV antibiotics because it was cellulitis spreading down my neck, which can be quite dangerous. I was given instructions to follow up with Mayo and continue with oral antibiotics. It was confirmed the next day that my CT didn’t show parotitis like we had thought, but cellulitis. CT scans can see the subcutaneous fat and the infection that was spread in my face, right over the paranoid gland. So the gland was not infected, it was more the skin/fat over it.

The ER dr. actually had remembered me from a visit back in 2013. I had gone to the ER with my mom because my body was swollen and red from reacting to basically everything under the sun. He was the first doctor to really invest and check all and everything he could possibly do. He really took interest in my case and believed something was underlying to cause these physical reactions. So 5 years later and after figuring out all that we have with going to Mayo, I could tell him what I had been diagnosed with and that in fact he was right, I had an underlying condition, autonomic neuropathy. I thanked him for believing me and encouraging me to find the root.

I continued treatment for this persistent infection during month of October and even into November. It took a strong antibiotic and a few rounds to fully stop the spreading rash. I started to notice how extremely tired I started to become and cut down on the days I was working. But I continued to do what I loved doing and helping people get the colons clean.

I was offered a spot, at the clinic I was training at, to work as one of their colon hydrotherapists. I was overjoyed and felt God was gifting me this opportunity I had prepared and worked so hard for. I always knew I wanted to specialize in some form of natural medicine growing up, and it just took little patience to find my place in the natural medicine world, as a colon hydrotherapist. I thank God every day for leading me down this path to get to this point.

My energy was dwindling fast and the eventually the lightheadedness was unavoidable. I began “seeing stars” even sitting down and had to come to the realization that driving was not going to be safe in this condition. My parents and sister helped me on on various days driving around and I am so very thankful for their support. But inside I was fighting a battle of letting go. I did not want to let go of this dream I had worked so hard for. I did not want to be sick and go backwards again. I did not know why this was happening and sadness was creeping in. I eventually had to tell my clients that I needed “a break to focus on my health”. That step took courage, but it was the right thing to do, because right now my body is weaker and needs to be tended to and strengthened.

I had more time to rest and also start searching for more answers. Several conventional doctors strongly advised a strict AIP diet, while focusing on nutrient dense food. My immune system was starving for nutrition and my latest lab tests showed some markers that prompted me to change. I went all in, preparing daily the bone broth soups, probiotic low histamine supplements, and rotating nutrient dense foods. It was very hard to transition my body because cooked meats tend to stick in my already slow digestion. I focused on healthy grass fed animal fats and coconut oil to keep me full. I increased my digestive supplement array and slowly I stated to accept that cooking like this, is the new way of life again. I now enjoy making up soup recipes!

Along with the POTS symptoms and random infection, my digestive system was really acting up. I was constantly bloated, constipated and basically in pain 24/7. I started going to a visceral manipulation specialist to help ease symptoms, but unfortunately it was not bringing relief. It just felt like my intestines were dead weight and things were not moving. I already know I have small intestine dysmotility, but intuitively I knew it was more than that. I tried all the natural remedies and felt like I was exhausting the list. I made a few trips to my family practice dr to get full blood panels done and things were mildly off. My liver enzymes were slightly elevated again, my red blood cell count was low, b12 low, and calcium was off. My bone scan revealed that I have osteopenia due to chronic amenorrhea. I still had 1 band left that is positive for lyme as well. It can get overwhelming with pinpointing “what’s wrong”, but I am thankful to have such a faith filled, detective minded doctor to help me sort through it. We made a plan to work on each imbalance and try to get my body back to balance again (this can be hard in general for someone with autonomic neuropathy). She suggested I find a gastroenterologist as well because I was having so much digestive distress.

As you can guess, I was reaching “medical burnout”. It’s a real thing, just ask any chronically sick person. It when your brain and emotions literally can’t take any more doctors visits, but the pain is so great that you have to keep going and searching. This is where family and friends play a huge role. My family started to step in more and encourage me and hold my hope up when I felt like I was falling deeper and deeper. I could not see a way out of this mess of autonomic, immune, gastrointestinal, etc. etc, problem-spiral. Now you can probably sense why I was reluctant to write this in the first place, because it just seems to be a compounding story of medical problems. Unfortunately I don’t have answers yet and am still searching. But I am fortunate to have faith in a God, who has all of this in the palm ofHhis hand. My life is not a jumbled mess of medical problems to Him. God sees through all my pain and reminds me daily of the hope that He is bringing.

A glimpse of hope happened over Thanksgiving break. I was bed bound for several days due to incredible stomach pain. A good friend who suffers with a digestive disorder herself asked some of her friends for a good gastroenterologist recommendation in the area. She gave me 3 options and I picked the closest one to home. I stepped into the office and candidly explained my symptoms. No sugar coating it, no smile on my face, and desperate for answers. The doctor was calm and collected and understood pretty well what autonomic neuropathy is and how intricately connected it is the digestive system. Let me tell you, that is not easy to find! He wanted to start from scratch with digestive testing and find a better solution than what Mayo could provide for my small intestine dysmotiliy. He too agreed something probably had progressed and was more focused on my colon. He suspected that my autonomic neuropathy could also be in flare up due to my increased POTS symptoms and digestive distress (digestive system is controlled by the autonomic nervous system). He suggested a new medication for motility and wanted me to get an endoscopy and colonoscopy ASAP, to physically see what it looks like inside. God has clearly led me to this doctor and I have a sense of trust and peace that only God provides. God will lead us in the right direction if we are open and let Him lead. It’s called surrender.

My colonoscopy confirmed that I have what’s called an “redundant colon” (shown in the picture) which is basically another loop that forms in the lower end of the colon. This makes the colon extra long and can cause problems. My gastroenterologist was surprised to find no peristalsis movement in the nerves and muscles inside my colon, as he probed around during the un-medicated colonoscopy. This helped confirm that my small intestine dysmotility is now spreading to affect my colon, leaving it with severe dysmotility. I am currently in the process of trying combinations of medications to support my immune system, hormones, nerves, and colon function. I pray it works, and it’s my job to follow this protocol with hope and diligence. I remind myself to be open minded each day.

So I guess I am telling my story because I don’t want to hide the valleys in my life. I want to be honest and maybe just by reading this you realize that you are not alone going through the tough stuff in life. I am right there with you. But we still must have hope and seek out what brings us life each day. Prayer and Gods Word breaths life into my day. My family brings me comfort in unconsolable pain. Focusing on Gods love and how He carries us hourly through these trenches will sustain us. God asks us to endure, sometimes past what we physically think is possible. But He asks of us to hold onto hope and never let go. He asks that we grow deeper in our faith and not run and get angry with what is going on. This may or not make sense to you, but in suffering we can actually find Gods peace. When chaos is swirling around, I find that Gods peace screams so loud and clear and all I need to do is hold on and have faith. God will show up. God is showing up.

My story doesn’t end there. It continues and is continuing every day. I felt God leading me to spend more time at home and focus on continuing my education as a Catholic doula (which is also my passion). Since I can’t actively help people in a clinic setting, I can prepare my mind until God calls me out to serve again. I also invested in several colon books that delve into the research and work of doctors who have particular interest in the colon and its role in the body. I am a true researcher and have great appreciation for all this knowledge that I can share someday.

I also find peace in routine. I love stopping by after errands, to say “hello” to Jesus at the adoration chapel. I remember that Jesus is the Divine Physician, so its important for me to carve out this time each week to pray and just be. Jesus loves us no matter how we come. All He asks, is that we just show up. He will provide the rest.

Little by little I try new things, and check-off-the-list the medical testing that my doctors order each month. Sometimes I feel at a stand-still or just frustration that my disease does not have an easy “cure”. It’s testing my patience as we figure out the right supplements and medications to keep my body functioning as much as it is able. But usually once I surrender and let go of the control that “I can’t fix it” or even “my doctor can’t fix it”, my peace emerges again. I am so very thankful God has given me a brain to retain and apply what I learn each day. I should never hide what God has given me and I believe that my life is a gift. It doesn’t matter if I suffer or thrive from day to day, its all worth sharing. It’s worth it because we are in this life together, lifting each other up and encouraging each other through each moment.

See you around!


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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 sourcesUnfortunately, 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.


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 DisordersBloating 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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