Living with an ileostomy

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

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

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

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

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

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

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

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

Ostomy 101

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

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

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

Too many prolapses!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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  1. Shannon says

    Thanks for sharing your story. Yoi have gone through so much and seem strong❤

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