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Posted 12/18/2017 12:06 PM (GMT -5)
I am scheduled for subtotal colectomy with possible j pouch construction on january 9th. I have had Ulcerative colitis since 2014, but the last year has been absolute hell for me. My last colonoscopy showed severe inflammation from the rectum up to 45 cm in the colon. I have tried numerous medications with no signs of relief and go 15-20 times a day. My question which I totally forgot to ask the dr was after the surgery will I still need to continue remicade since my rectum will still be in my body and its inflammed? Or since it will not be hooked up it will be fine? Also I was told by 1 GI, that if I was still inflamed before surgery I would not be a good candidate for a j pouch since things were controlled and its more likely to come back. My new GI after I moved said that is not the case. Has anyone been told that?

I'm very nervous and excited to have surgery to get my life back which has been taken from me from this disease
Posted 12/18/2017 1:04 PM (GMT -5)

toddf said...
Also I was told by 1 GI, that if I was still inflamed before surgery I would not be a good candidate for a j pouch since things were controlled and its more likely to come back.

I don't understand this. Was your GI saying that because you had an inflamed colon you were not a good candidate for a j-pouch? Or was he or she referring specifically to your rectum? Either way, it doesn't make sense. By that logic basically no one would be a good candidate for a j-pouch since most people get it because, surprise, they have UC.

Regarding having to continue Remicade, I'm not sure. I stopped all meds once I had my subtotal colectomy, even though my rectum was inflamed. I didn't experience any symptoms. I occasionally had expelling of mucus but that is completely normal. There was no urgency involved.
Posted 12/18/2017 2:36 PM (GMT -5)
You'd only need to continue meds if you had crohns or pouchitis.

By definition UC only affects the colon, once you have a colectomy (your colon removed) you will no longer have inflammation of the colon (Colitis).

If you have secondary effects like arthritis then you may need to stay on remicade to treat those; but most of those go away once the diseased colon is removed.
Posted 12/18/2017 6:24 PM (GMT -5)

07kr5 said...

toddf said...
Also I was told by 1 GI, that if I was still inflamed before surgery I would not be a good candidate for a j pouch since things were controlled and its more likely to come back.

I don't understand this. Was your GI saying that because you had an inflamed colon you were not a good candidate for a j-pouch? Or was he or she referring specifically to your rectum? Either way, it doesn't make sense. By that logic basically no one would be a good candidate for a j-pouch since most people get it because, surprise, they have UC.

Regarding having to continue Remicade, I'm not sure. I stopped all meds once I had my subtotal colectomy, even though my rectum was inflamed. I didn't experience any symptoms. I occasionally had expelling of mucus but that is completely normal. There was no urgency involved.

Maybe I misunderstood him, it was when we first discussed surgery about 7 months ago.

Glad to hear that others have inflamed rectums and were able to stop medicines. I'm hoping to do the same when I talk to my GI next week
Posted 12/18/2017 7:05 PM (GMT -5)
They remove your rectum and make storage for stool out of the terminal ileum, which is the end part of your small intestine. Since UC only effects the colon/rectum, and you no longer have those parts, you shouldn't be inflamed anymore.
Posted 12/19/2017 9:07 AM (GMT -5)
The only part that can still be inflamed which is an issue I think I'm dealing with is the cuff that is left. It's only around 1/2-1" in length.
Posted 12/19/2017 10:26 AM (GMT -5)

Bull101 said...
The only part that can still be inflamed which is an issue I think I'm dealing with is the cuff that is left. It's only around 1/2-1" in length.

Bull, how are you doing?
Posted 12/19/2017 4:17 PM (GMT -5)
Same ole, still bleeding from my cuff. can't really see it in the toilet but the first wipe sometimes shows a decent amount of blood. Got some canasa supps to see if that can help the cuffitis at all. Doc also thinks there's a fissure that seems to be lingering that can cause pain. It's almost like scar tissue that won't go away and opens up sometimes. I got flagyl ointment to see if that can help.

I feel like I take longer than most JPouchers to go to the bathroom, initially I can go immediately and empty majority of my pouch but then to fully empty it can take around 5-10mins. Not sure if that's extremely unusual or somewhat seen in minority of patients. I usually go around 6-7 times in 24 hours including getting up once at night.

All in all I can't complain too much, some minor inconveniences but it's something I can deal with.

I guess this correlates to the original post as well, not all surgeries are 100% perfect there can be lingering issues but nothing like UC was.
Posted 12/19/2017 4:50 PM (GMT -5)
It usually takes me a while to completely empty my pouch too. When things are good for me I empty 3-4 times a day and never at night. I can't remember the last time I woke up to empty my pouch.
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