Hi guys I am new here and would love to hear more about your experiences with pouchitis. I have been having symptoms the past few weeks and had a pouchscopy done last week and was told I have acute(mild) pouchitis. I was put on flagyl before this and it made me so sick I had to stop it and I can’t take augmentin or cipro for allergy reasons. I am currently doing mesalamine suppositories once a day and im feeling a little better but still experiencing discomfort down there. But the weirdest thing im experiencing is im having stool like discharge when I go used the toilet mind yall I currently have an ileostomy in place. I told my doctors about this and they said it’s uncommon and keep telling me is just mucus. But it literally feels like im having a BM when I go and it looks nothing like mucus. Has anyone else experience this??? Thanks in advance!
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Hi,
For the 13 weeks I had my loop, I had mucous discharge every day and sometimes several times a day.
it started out dark brown and gradually lightened up. Sometimes I saw red. Doctor was not concerned.
by the 13 th week right before takedown the mucus turned clear.
it was so weird, that the jpouch was active during my ileostomy phase. Perhaps some others can weigh in as to why this occurs.
Thanks New577
I am 7 weeks out and yes I’ve had dark colored mucus and clear but now its colored (stool like) and was shocked when I first seen it especially with straining so I was afraid I was actually having a BM from down there.. my doc said its very uncommon but possible and that’s most likely accumulated mucus but some days I have it more than the usual clear mucus. Just want to see if anybody else has experience anything like this? How has it been now that you’ve had your takedown? Is your Jpouch behaving? I’m hoping to get mine done by the end of the year.
As you can see from my signature I had a perforation 12 days after takedown requiring emergency surgery.
it’s has now been about 90 days since reconnection number 2 and pouch is not yet behaving
although I am down to 2 Imodium per day @ 9 am and 9 pm , if I don’t take them I will immediately get burning stool which is just awful. I go back and forth between slight constipation/straining/pushing and burning stool/nighttime leakage.
Surgeon says give it more time or it could be like this forever.
Yes I saw after I had replied.. and Ohh my are you currently on antibiotics or just the imodium? Are they treating you for pouchitis in any form?
Just Imodium
they will not give me antibiotics until they scope, but they tell me it’s too early to scope.
So I wait and suffer.
At some point I will self medicate the cipro as I have access to the medicine.
Oh no... I'm sorry to hear that and I hope things get better for you. I am afraid I will constantly have pouchitis after my take down and im not looking foward to the suffering and meds. I'm already experiencing mild pouchitis and I have a stoma in place.. I can't imagine how it's going to act when it will actually have stuff going through it.
I understand.
I myself am paranoid that I will have another perforation along with a permanent bag.
there are things we cannot control and have to let go and have faith that things will work out.
let me clarify that I do have some good days. I just want every day to be a good day. I just need to give it more time. I still would not trade the pouch for a bag. You will be in a much better place after takedown.
so although I suffer some days, I don't regret my choice to have a jpouch.
I do have second thoughts about having surgery to begin with. If I had to do it all over, which I cannot, I would opt to not have a colectomy and take my chances by being scoped on a frequent basis. It turns out for me surgery in general was not a good choice.
but now that I am here, I am trying to make the best of it. Before I leave this site and no longer post, I hope to tell of my success story.
@Wendyy posted:Oh no... I'm sorry to hear that and I hope things get better for you. I am afraid I will constantly have pouchitis after my take down and im not looking foward to the suffering and meds. I'm already experiencing mild pouchitis and I have a stoma in place.. I can't imagine how it's going to act when it will actually have stuff going through it.
If you have pouchitis with a loop ileostomy it’s most likely what’s called diversion pouchitis. This will generally improve substantially or go away completely once the pouch is put into full service.
@New577
I agree we shall have faith that everything will be ok and things will get better. I also see what you mean with having surgeries I sometimes think to myself what if I didn’t have my total colectomy done and maybe my colon would have responded to something eventually but it’s to late to think that. Surgery made me get my life back, I’m just nervous how it’s gonna b like when I have my take down done. I hope to hear good news from you on this site later on. Good luck!
@Wendyy posted:@Scott F
Well im glad it’ll get better when my pouch is actually working just never heard of that term and my doctors just said I had acute pouchitis when I got the scope done. I’ll look into it thanks! Did u experience it as well?
I had a single stage procedure, so I was lucky enough to never experience an external ileostomy.
oh I see, I just read over it online and I believe this is what im going through. I appreciate you actually knowing what it could be. I’m doing the 3 step process since I wasn’t doing so good when I had my first surgery so I’m just anxious to get it all over with and see the outcome.
-Thanks!