Recurring GI Illness After Colectomy and Ileostomy Surgery

Hi,

I had my total colectomy and loop ileostomy surgery on November 21, 2024. It included the creation of a J-Pouch, but I opted not to go for the pouch just yet, as I was feeling quite healthy and I wanted to live it up after all of the colitis flares. And I did until March.

In March, I did some traveling for work. It could be unrelated, but I flew to another state and stayed for only a day. Not a whole lot of sleep happened. I got back and felt very tired. The next few days, the symptoms got worse. Characterized by poor appetite, high fatigue, nausea that increases with activity/eating, pain/nausea within minutes before output, and also increased blood and mucus from the disconnected J-Pouch.

Here's the fun (not fun) part. These episodes last 1 week, and then I feel almost perfect for 2 weeks. And then it happens again. It's been on this schedule for 4 total episodes. CT scan, MRI, ultrasound, some basic blood and pathogen tests. Nothing.

Has anybody ever had this happen before? I'm at my wit's end.

Hello C

I have been through the pouch process, but not with the symptoms you describe. Regarding the upper GI, it sounds like an intermittent blockage, possibly a twisted intestine. Has dehydration been ruled out? I have a friend who reports the same with no history of colorectal issues, but no answers. Regarding the pouch, have pouchitis and cuffitis been ruled out? Have you had the dye enema and scan to detect leaks in the pouch yet? This is usually done before the pouch is connected to ensure no leaking into the abdominal cavity. You have had very large surgery so far; late November until March is only three months. I am surprised you were able to live it up in such a short time, but good for you if that's the case. Was it all done in one session or two stages?

Hi,

To say I lived it up might be either an understatement or an overstatement. Not sure. I did some -20 wind chill hiking in the White Mountains, but that's really it. Winter sucks.

The surgeon's office has been radio silent. I'm actually furious with how horrible their aftercare has been. The first time this happened, he said I should take some Metamucil and consider getting the step 3 surgery (steps 1 and 2 happened at the same time). GI has been handling things. They said I probably have pouchitis for sure, so they gave me antibiotics for that. I started last night, but it seems to be working already. They also gave me Omeprazole. They indicated if I have another episode, they may do an endoscopy. They did some blood tests, and my metabolic panel seems fine. My CBC has been godawful ever since the UC diagnosis. They talked about iron infusions months ago, but nothing ever happened. I'll ask again.

Today the episode is subsiding. I predicted it would end today anyway because that's how it's worked three other times. Convenient (not at all) that it ensures I can't go to work for an entire week, and then I'm immediately ready to rumble by Friday afternoon (is it a mental mind/gut thing?? I love going to work!). Unfortunate because I won't really know how these medications are working until it happens again in exactly two weeks.

It is extremely confusing to GI and obviously to myself that it happens on this bizarre schedule. What kind of biological process works in terms of weeks? That's a human invention.

Hiking ..!! I thought you meant hookers and whisky, never mind 🤣😂

For the pouchitis/cuffitis, I used mesalazine suppositories and a budesonide foam suppository. This was after the pouch was disconnected, which is how it is now. This went on and off for about a year, then it disappeared about three years ago.