u/ExoticMasterpiece719

27M with ulcerative colitis in the UK.

Last year I developed fulminant UC and needed an emergency subtotal colectomy with an end ileostomy. My rectum was left in place.

Since then I’ve had ongoing active inflammation/proctitis in the remaining rectum, with bleeding, mucus and urgency. I’ve also developed quite severe widespread pyoderma gangrenosum (PG), including around my stoma.

I recently saw a colorectal surgeon to discuss my options. He said there are 3 options:

1. Leave the rectum as it is and continue medical treatment
2. J-pouch/reversal
3. Remove the remaining rectum and keep a permanent ileostomy

He said he wouldn’t offer me a J-pouch because of my PG and ongoing rectal inflammation. His concern is that the remaining inflammatory disease could continue to drive the PG and that a pouch could ultimately fail.

My gastro consultant thinks option 3 (proctectomy + permanent ileostomy) is the best option and would say no to option 1 and 2.

I really don’t want to live with a stoma….

My surgeon said he will ask for second options but he said from what’s been going on a reversal is a no

Has anyone else been in a similar situation, particularly with UC + PG and being told they aren’t a good candidate for a J-pouch? Did your doctors eventually reconsider, or did you end up having a permanent ileostomy?

I’d really appreciate hearing from anyone who’s been through something similar.

Hi all….

Does anyone miss the feeling/sensation of pushing out a massive log from ur bumhole and feeling the released pressure… or pushing out a MASSIVE fart?

I use to LOVE showering before my stoma and found it therapeutic and relaxing. I hate it now. It’s such a chore. Drying bag etc…

Anyone else like that?

I was admitted to hospital with acute severe ulcerative colitis (ASUC) and ended up needing an emergency subtotal colectomy with an end ileostomy. Before that admission I’d never even been diagnosed with IBD, and I didn’t even know what a stoma was until I was told I needed emergency surgery.

I still have my rectum, but it has active colitis, and I’ve also developed peristomal pyoderma gangrenosum (PG), which my team says is related to my IBD.

At a follow-up, I asked my gastro consultant whether reversal would ever be possible. He said they don’t normally reconnect people in my situation, but he also said he didn’t want to say “never” because he didn’t want me to lose hope.
I’m a bit confused by what he meant.

I always thought that people with an end ileostomy after ulcerative colitis usually go on to have a J-pouch eventually. Does “we don’t normally reconnect” mean they don’t think I’m a good candidate because of my ongoing rectal inflammation/PG, or is it just because it’s too early to know?

Has anyone else been told something similar? Did your situation change over time?

Hi

Am I just immune to stoma blockages? 😂

I’ve had an end ileostomy for a while and I genuinely don’t seem to block. I’ve eaten huge bags of popcorn, salads, strawberries, dried fruit, mushrooms (barely chewed), sweetcorn, pineapple, wholegrain bread… and everything just comes out the other end. Sometimes multiple high fibre food in one sitting.

Can I also add with no cramping, pain etc as well

I know the advice is to chew well and avoid certain foods, but I’m curious if anyone else seems to tolerate pretty much everything? Or have I just been incredibly lucky so far?

Hi all,

Has anyone else struggled with seeing stoma-related content on social media?

Lately I’ve been seeing a lot of videos from nurses and healthcare workers making jokes about stoma bags, usually about the smell or having to change them. Maybe they’re just joking about parts of the job, but as someone with a stoma, it honestly makes me feel worse about mine.

What also makes it harder is that I see so many posts saying their stoma changed their life for the better. I’m genuinely happy for those people, but I find it difficult to relate.

I didn’t know I had IBD until I was admitted to hospital and then needed emergency surgery. Before that, I had no pain, no urgency, and was living a normal life. I wasn’t someone who had gone through years of treatments and severe symptoms before getting a stoma. Everything happened so quickly that it felt like my life changed overnight.

A lot of people describe their stoma as giving them their life back. For me, I feel like I’m still grieving the life I had before. I’m trying to adjust, but I haven’t reached the point where I see it as a positive.

Has anyone else felt like this, especially if your surgery happened suddenly? Did your feelings change over time?

Had a joint gastro/dermatology clinic today regarding my UC and peristomal PG.

The plan is:
- Back on prednisolone 40mg, reducing by 5mg each week.
- Starting adalimumab (Yuflyma) alongside prednisolone.
- MRI booked.
- Endoscopy of both my rectal stump and through my ileostomy booked.

I’ve had ongoing rectal bleeding and inflammation since my subtotal colectomy 7 months ago, as well as peristomal PG that has been difficult to control.

When I asked about reversal, the consultant said that if the rectum is still inflamed then reconnection is a no. He also said that in my situation they don’t normally reconnect and that my stoma is probably for life.

I knew this was a possibility, but hearing it from the consultant hit harder than I expected.

Has anyone else been told their stoma was likely permanent after a subtotal colectomy and then had further discussions after MRI/endoscopy results? Interested to hear others’ experiences, especially if you’ve had ongoing rectal inflammation or PG.

Feel like I’ve had more issues after the operation and the operation was suppose to fix me

Hi all,

Do any of yous deal with rectal bleeding and how often?

I’ve been having 2/3x daily rectal bleeding (toilet water turns light red) and was wondering if this is ‘normal’ if you have a subtotal colectomy