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Autoimmune disease

J-pouch. Been told I need surgery.

11 replies

ColitisSucks · 28/08/2021 11:00

I have colitis. I've been in flare for probably 2.5 years now. I'm steroid dependant, 15mg of Pred to make life manageable. Nothing bloody works. Humira did briefly but I declveloped antibodies and i've now flown through all the other biologics, most recently Stelara, with no luck with any of them. This week I've been told if it was going to work it would have by now, I'm basically out of options. It's surgery now.

IBD nurse has referred me to talk to the surgeon, don't know how long that will take or what the waiting list will be like for the surgery.

I'm half fucking terrified, I've never had any surgery before, and half relieved. That although it'll probably be not great, at least I'll be able to leave the house without the very real fear of shitting myself in public Sad

But I wondered if anyone here has had a j pouch done and would talk to me about it? Any tips for questions to ask the surgeon? Or aspects to it I may not realise? (for instance Facebook has taken to advertising coloplast bags to me - thanks very much... - and there was a bit about a woman who couldn't wear her favourite jeans anymore because of where the waistband sits.) I'd never considered clothes being an issue in the interim period that I will have a bag. So any things like that that came as a surprise to you when you had it done?

Thanks.

OP posts:
Bamaluz · 28/08/2021 11:36

I have, I had a bag for a year after emergency surgery because of a perforated colony due to ulcerative colitis.
I then had the pouch surgery.
Regarding the siting of the bag, you should be able to talk to the surgeon about the best position for it beforehand.
I'll get back to you later but I didn't want to read and run, it's very daunting and I realise you must be worried but try taking one step at a time, it will be fine, and a relief in a way.

ColitisSucks · 28/08/2021 13:25

Thank you!

So sorry to hear you had a perforation, the thought of that really worries me, it must have been frightening for you.

Have you find life with the J pouch easier than living with UC? Do you know roughly how long after they made the pouch was it until you had the surgery to reverse the stoma?

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Bamaluz · 28/08/2021 14:23

I didn't know I had UC until after the emergency surgery, it must have been very mild until the sudden flare up that caused the perforation, so it was a bit of a shock to say the least! I just need the toilet quite often and don't form solid stools, I'm usually up once in the night, occasionally I need to go again just after I've been, but I can hang on if I need to.
I was lucky, I had the pouch formed and stoma reversed in one operation even though I had originally been told it would be two.

ColitisSucks · 28/08/2021 15:46

Bloody hell! I'd think that must have been a shock!

Interesting you had the pouch and reversal all done in one go, I didn't realise that was possible.

Being able to hang on would genuinely be life changing. I'm now at the point where I've been so limited, for so long, that I'd pretty much do anything to get some quality of life back again.

How would you say the pouch compares to having the stoma? How often did you have to 'do' stuff to the bag?

Thank you for talking to me

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HGC2 · 28/08/2021 16:11

I have chrons and have also exhausted all medication, I had a resection 4 weeks ago and was expected to need a stoma. I met with the nurses ahead of surgery and discussed where is would sit, had my stomach marked so the surgeon knew where it was to go snd they answered all my questions. I’m sure you will get this opportunity to ask questions about the j pouch

In the end I didn’t need the stoma but the difference surgery has made to my life already is amazing. As the surgeon said to me, I didn’t have a life really as bathroom visits and pain were always on my mind, now I’m in no pain and go to the bathroom once a day!
Hope you get a chance to ask all your questions soon

ColitisSucks · 28/08/2021 18:14

Thanks HGC2 sorry you're going through this too, but I'm so happy to hear it's made a positive difference already.

I'm sort of worried I won't know what questions to ask, if that makes sense?

I'm also, if I'm brutally honest, worried I might die during the operation. I know that's vanishingly unlikely. I know I'm probably irrational (I have anxiety, not specific to health) and I don't think I have any particular risk factors. I'm trying to keep a lid on it, I don't feel like I can talk to DP about it because it will make it more real if I say it out loud. What if he's scared of that too? It will make it seem more rational which will make it harder to push away.

Like I said in my OP, I've never had surgery before - and this is a pretty major one! I keep thinking they're going to cut into me, and then take out quite a large 'piece' of me. It'll be gone. In a medical waste bin somewhere. That seems so strange. A big part of my body won't be there anymore.

Sorry to ramble a bit. I'm not really sure what I'm feeling at the moment.

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Nooproblemoo · 28/08/2021 18:20

Check out Sam Cleasby's blog 'so bad ass me'.

Sam had j pouch surgery and later had it reversed as it didn't work for her. You might find her blog helpful www.sobadass.me/2014/02/24/j-pouch-surgery/

Bamaluz · 28/08/2021 18:22

I was pleased to have the pouch after having a stoma, although the early days weren't easy regarding frequency and urgency, it gradually improves.
The bag needed emptying every few hours, easily done, the stoma nurse showed me how in hospital. It needs completely changing every day, although I have heard of people leaving it longer. This is easy enough, especially when you get used to it, just takes a bit longer than going to the loo normally.
I had a few problems with leaks occasionally because I have very sensitive, reactive skin, which would cause the adhesive to fail in small areas, and as I regained the weight I had lost when ill, my stomach shape changed slightly.
This can all be dealt with, you can get extra tape etc if you are prone to problems, I didn't have any at all for a long while,come people even go swimming with a bag.

Bamaluz · 28/08/2021 18:23

Life feels much more normal with a pouch.

ColitisSucks · 28/08/2021 19:54

[quote Nooproblemoo]Check out Sam Cleasby's blog 'so bad ass me'.

Sam had j pouch surgery and later had it reversed as it didn't work for her. You might find her blog helpful www.sobadass.me/2014/02/24/j-pouch-surgery/[/quote]
Thank you, I'm off to read that now!

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ColitisSucks · 28/08/2021 19:58

I try to swim a couple of times a week. In fact it's pretty much the only time I don't feel like I need the loo, for some reason. So I'd really want to keep doing that, if at all possible.

More questions for the list!

Thanks everyone, this is helping Smile

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