Happy Saturday and 4th of July week!
Anyone have recurrent bowel perforations?
Backstory: I got my permanent ileostomy in December of 2021. Everything went great healing from the surgery, learning to take care of it, and no complications until last April.
Last April, I ended up in the ER from severe dehydration due to an increasingly uncontrolled high output. Of course, the hospital didn't follow through and run every single test possible that first time I was in for 4 days. Eight days after being discharged, I was back in the hospital with severe dehydration and an acute kidney injury. After running more blood work tests this time, plus the poop samples, they determined I had both salmonella and E. coli. I have no idea how I could have both. This time, I stayed in the hospital for five nights.
Once discharged, I set a new course of hydration. I tried every hydration drink you could imagine to stay hydrated, just in case I ever got severely dehydrated again.
You would think I would have been healthy after that; however, I continued to go downhill, ending up in the ER every 8 to 14 days after being in the hospital for 3 to 4 days. I hope I'm articulating this correctly. I would end up in the ER and have a hospital stay from several common occurrences that kept repeating: pain in my abdomen, high output, nausea, weakness, dizziness, fainting/loss of consciousness, rapid heartbeat, low blood pressure, sometimes a bowel obstruction, and sometimes a bowel perforation.
Every blood test imaginable was concluded. Every scan, every allergy test, endoscopies, and ileoscopies. Months of food diaries and no answers to any conceivable question.
As with any chronic illness, nurses, doctors, and specialists begin with almost an excited glee to find an answer and order tests to come up with a plan for what the problem is and to have a plan. But by the 6th to 8th week mark, there was a notable attitude change towards me and the care I was receiving due to not being able to find any answers.
At this point, since there wasn't an answer to why all of this was continuing to happen, I was given medications to help with the symptoms but not the cause. Medications such as Imodium to help with the high output and Miralax and other over-the-counter medications to make me poop when I would have an obstruction. I was even asked if I was purposely causing my issues for attention! I have never been so offended in my life and felt so disregarded, disrespected, and discounted by the medical profession before. My quality of life became non-existent. My only medical professional champion was my colon surgeon. He continued to think that instead of ulcerative colitis being what I had that led to my large colon being removed, it was Crohn's. However, Crohn's lesions continued not to show up on any scans. Inflammation, sure, but nothing in the scans or the biopsies indicated Crohn's as the culprit. I'm sure all of you have felt before that you were just a number in the medical field and not an actual person dealing with something that was just very, very difficult to diagnose.
Things got a little better between December and February with the frequency I was ending up in the hospital. Who knows the real reason why? The only thing different I was doing at this point was taking CBD gummies to help with the nausea and abdominal pain so I could stay hydrated enough to force those liquids into me. With a background in law enforcement, I am uncomfortable taking cannabis for medical reasons even though it's now allowed in Minnesota.
This past March, I ended up with another significant small bowel perforation and GI bleed. The CT scan also showed a type of tunnel or fistula in my small bowel a few inches from my stoma that led to a cavity that was filled with sepsis. After 11 months of terrible health, my colon surgeon decided to do surgery relocating my ileostomy from the right side of my body to the left, removing the last couple of inches of my small bowel to get rid of the sepsis cavity. That surgery was on April 16th, 2025.
I have healed "okay" but have continued with the high output and all the other symptoms. Last weekend, I had a terrible GI bleed that filled up my bag completely three times on the way to the ER and in the ER. My colon surgeon was able to find the bleed in the OR since it was relatively close to my stoma and put in a couple of stitches. This stopped the bleed.
We all have chronic medical stories like this since we are ostomates. I am asking for help, please, in figuring out why I would continue to have bleeds and any suggestions on the high output. When I mentioned I have healed only okay, it is because this time my stoma is not centered... meaning when it "erupts" or flowers open to release poop, the hole for it to open now is on the very side up against my skin. It was a bit like this before I went into the ER last weekend, but now it is right up against my skin. I can barely get a bag to adhere. And since I have noticed this, my health has been bad, being in bed all week with all the symptoms listed above.
I am also hoping for some moral support from all my wonderful ostomates. When I have had perforations with GI bleeds in the past, it could have been from small bones from salmon or chicken I had eaten a day or two previously. But for GI bleeds since May 2024? Could it be due to an extra thin and weak small bowel? I now have a second opinion appointment with the University of Minnesota. I'm hoping fresh eyes and attitude will help with the situation.
Any suggestions on why the high output and GI bleeds that are out of the box that any of you could think of, please????
Thank you for listening - I apologize for the length.
~Colene
