Hope this post finds everyone well, or on the way to being well. I thought I would share a recent occurrence I went through.
Having been 1.5 years after my takedown I am still learning my new body. I started experiencing some odd pains in my lower abdomen over time. I thought it was pouchitis for the longest time. It eventually turned into what I thought was a UTI. I dealt with it for about a month until I started passing air when peeing. That is when I went to my Primary care doc. He did a prostate exam and determined what he thought was a prostate infection. He prescribed me a regiment of antibiotics and did a culture. The culture turned up enterococcal bacteria in my urine. That should have been a red flag to the doc. This is the importance of seeing a specialist. The doctor then prescribed me another regiment of antibiotics. After a few days of the condition worsening I decided to go see an urologist. After speaking with him for about 3 minutes he said I had a fistula and sent me for a CT scan.
The CT scan showed plenty of inflammation but did not show the fistula. Fistulas are notoriously hard to find on scans. After reviewing the results my urologist used the scope to look at my bladder and immediately found it. He recommended I contact my surgeon, as well as himself doing the same. I went in for the consultation and it took 2 weeks to get on his schedule. My surgeon was completely baffled and had never seen this before. He had seen fistulas before but not a year and a half post take down. He said they usually show up very early if you develop one. He gave me no assurances about what he would find or what I would wake up to post-op which was very unnerving. 2 days before my surgery I had severe bloating in my lower abdomen which I thought was my prostate flaring up again. It turned out to be severe infection which pushed it's way up to the surface through my old incision site. This was very painful. It caused a boil that I had to lance to get relief. To save the gore let's just say that was very unpleasant to do yourself. So I entered the hospital for surgery with an open wound into my abdomen through the boil site.
Post-op I woke up to relief beyond imagination. There was no bag on my belly (so thankful). Only a large bandage. I had a seven inch incision down my belly to the site where the boil rose up, and a large cut out section where the infected tissue had to be removed. It was very odd seeing a hole larger than a golf ball in your belly, but other than the site of it, it was no big deal. I just had to pack it. 1 month post op it has fully filled in.
It turns out this fistula had actually formed off of the top corner of my pouch, connected to my small intestine as well as my bladder. The bacteria was transferring from my gut to my bladder through the fistula which was causing the infection. The infection was causing air in my bladder which was why I was passing air while peeing. So my surgeon took out a small section of intestine where the fistula was, separated the organs, and only required a very small suture on my pouch. There was no damage to my pouch (thank God) or my bladder. It was a first for my surgeon but it actually had some very positive results for him.
When he made my pouch he had limited intestine to work with and had to angle it differently (more towards the front of my body than normal) to have enough to make the connection during the takedown. He said this actually is what made the fistula come out of the front of my body instead of moving to the back towards my spine. He said that it would have been very dangerous had it gone the other way and he actually is going to change the way he orients the pouch in future patients because of this. That made me feel great that due to my suffering, it may actually help others in the future.
So here I am a month post-op and I feel better than I have in 4 years. I actually feel normal again. I hope this post helps someone down the road as it seems this is a very rare occurrence.