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Autoimmune disease

Stoma due to IBD

10 replies

trampoline123 · 05/01/2023 16:34

Wow! I've just realised it's nearly a year since my stoma surgery du to unmanageable Ulcerative Colitis.

With that I've realised that I've still passed blood and mucus every day since then, not to mention the continual flare that lasted 2 years before my op.

I've still got my rectal stump so that must still be ulcerated, I'm not on any meds as exhausted them all and steroids don't work.

Has anyone else been like that?

I have emailed by IBD team as I haven't had any contact with anyone from the hosp since my op!

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silverclock222 · 05/01/2023 16:38

Hi, I had a bb done but my friend who hasn't continues to pass various mucus etc.

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trampoline123 · 05/01/2023 16:43

I wish they'd just done the bb as they know I don't really respond to medicine.

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Noimaginationforaun · 05/01/2023 16:45

I also have a BB and I’m on Humira injections to keep my Crohn’s under control. Is it an option for you?

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trampoline123 · 05/01/2023 16:56

I've tried all the biologics and they haven't worked.

My IBD nurse already replied and said she'd discuss with my consultant tomorrow in their meeting.

It's totally manageable and doesn't bother me as such, I just worry the chances of bowel cancer increase, apparently it does if you just have the rectal stump but with active disease too - that can't be good.

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silverclock222 · 07/01/2023 21:12

I had my ileostomy and bb due to anal cancer. I'm quite sure it was the biological for Crohns that gave me cancer quite truthfully. I'm only on sulphasalasine now. I bloody love my stoma!

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Daniki · 24/02/2023 14:22

Really late to the thread but how are you since? Sounds like you need rectum removed. That's where all my disease mainly was and I really notice the diff since it's gone. I had an ileostomy for 2 years before the rectum removed and I used to pass the most horrendous stuff before it was taken away!

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trampoline123 · 24/02/2023 20:20

Hi, I actually don't think it's as bloody now for some reason. I contacted them and they recommended I try a new medicine but it sounds a bit savage so I'm not keen. I received a letter about a perm stoma but seeing it in writing made my heart sink a bit of you know what I mean.
I've seen quite a few posts about reversals and think it would be nice to have that option one day if I can.

I was thinking of trying suppositories again now that it's just the rectum, maybe they will work better.

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Daniki · 24/02/2023 20:44

i always found suppositories better for stopping a flare than anything else to be honest so hopefully it works! Yea it’s a massive decision and defo no need to rush into it. I made mine permanent in April last year and it’s no easy feat!

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GrannyAchingsShepherdsHut · 24/02/2023 20:48

Hi, OP. I'm also just over a year post iliostomy OP with a rectal stump. Also pass mucus and blood, and the UC was unresponsive to meds before surgery.

I've been given pentasa suppositories which did absolutely nothing while I was ill pre op, but do work now. In fact one lasts for 2/3 days.

If they didn't work the next med was going to be steroid foam enema.

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trampoline123 · 24/02/2023 20:50

GrannyAchingsShepherdsHut · 24/02/2023 20:48

Hi, OP. I'm also just over a year post iliostomy OP with a rectal stump. Also pass mucus and blood, and the UC was unresponsive to meds before surgery.

I've been given pentasa suppositories which did absolutely nothing while I was ill pre op, but do work now. In fact one lasts for 2/3 days.

If they didn't work the next med was going to be steroid foam enema.

That's really good to know, definitely going to ask then.

The passing of mucus and blood doesn't bother me as such, I just worry the longer it's all diseased the chances of cancer must increase - have you heard that before?

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