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Hi guys,
I've currently got an ileostomy and was hoping to have the reversal to construct the j pouch maybe next year, I've been scoped and they've told me I have ulcerative proctitis in the remaining part I am still getting rectal bleeding to, I just wanted to know how this effects me having the j pouch created and can you still have a j pouch if you have proctitis?

I'm just so worried because I was supposed to see my consultant today but when I got to my appointment he wasn't there and I saw a junior registrar who firstly just said you can't have the reversal (but my consultant has always said I can) then she went on to tell me that she doesn't know much about this area and j pouches :/ she also failed to acknowledge that I'm pregnant at the moment, and I'm 34 weeks gone!!

Sally xxx
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Unfortunately your junior consultant does not know what she is talking about. It sounds as if you have only had step 1 of a 3 step surgery. If so, the surgeons leave quite a bit of cuff so that when they create your j-pouch (step 2) they have enough tissue to work with. Have continued UC in this tissue is NORMAL! Your next surgery will eliminate much of the cuff and more than likely those symptoms will abate.

Sue Big Grin
Sally,
Don't worry yourself about this. Obviously the junior consultant doesn't know much about your situation and admitted she doesn't know much about j pouches. Like Sue mentioned, It sounds like you still have your rectum.(Please correct me if I'm wrong). In the next step of surgery, your rectum will be removed and the j pouch created. You still have the disease in your rectum that's why you are still bleeding. Hopefully you can see your regular doctor soon to clear everything up.

Best wishes with the upcoming birth of your baby! Smiler
Most of the rectum is removed, except for a small 1-2cm rim of tissue. They usually do not strip the mucosa unless there is prior dysplasia or cancer in the area. It increases the risk of incontinence to do the mucosal stripping, so you need a highly skilled surgeon if that is proposed. The anal canal is left alone (good thing too, since that is where all the pain receptors are!).

Jan Smiler
Thanks for the advice guys here's hoping once the 2nd and 3rd steps are done it will all come together a bit more (hopefully Smiler ) also lesandiego I just wanted to ask you said that you still had bleeding after having the first step done, did the bleeding only stop once you had the 2nd step done (so the rectum removed)?

Also one other question for everyone I'm planning on delaying my j pouch operation for about a year and a half maybe 2 years as we really want another baby to complete our family, but if the bleeding continues that long will it mean maybe the damage it's causing can effect the chances of me having the j pouch? I've tried the suppositories and they did nothing for me at all

Sorry for all the questions I just seem to leave hospital appointments with a million questions left unanswered and in all honesty I've always got the best answers here! Xxxx
Let's see if I can remember my timeline last year:

5-week hospital stay (June/July 2012)
Emergency removal of colon during 2nd week.
Mucus/small amount of blood 4th week - Definitely disease related.
Prescribed proctofoam (did not do much good, so quit after 2 weeks). I am allergic to any mesalamine related products.

Hardly any mucus/blood while at home recovering with several appendages(drain bag, PIC LINE, colostomy bag) hanging off of me (Aug-Dec 2012).
1st step of J-Pouch January. Some mucous (pinkish) between Step 1 and 2.
Step 2 - Take Down April 2013

I would describe the mucous between 1 and 2 as a "normal" adaption of the J-Pouch (not necessarily UC related).
Are you taking any mesalamine medication?

I had acute pancreatitis after I took Lialda for 6 months. I developed pain on my left side that sometimes moved from front to back. Thought I was having pre-menstrual cramps, but within 3 days I was doubled over.

I had remembered reading the warning insert for Lialda and it had said "If you develop pain on the left-side, call your doctor immediately". I took my medication, went to the ER and was admitted immediately. My amalayse levels were off the charts!


That is when my GI told me I was allergic to mesalamine.
Gosh! I hope your feeling better now, I know what you mean about the pain I was in hospital a few weeks ago with it, Im not on any medication at the moment I probably should be for the bleeding I'm getting but who knows whats going on at the moment :/ I have been on masalasine though but that was a year and a half ago so I'm not sure why my levels are so high
Ask if you can take Canasa, mesalamine, suppositories while pregnant, to treat the UC going on inside or something similar. This should help with the bleeding.

When you do get around to the j-pouch creation and they leave the 1-2 cm of rectal tissue at the cuff I would request they do a mucusometry, probably spelled wrong. That they scrape off the mucus lining before attaching the j-pouch to it. This lowers your chances of having further UC problems stemming from that 1-2 cm. I had UC in my rectum from the beginning of my diagnosis 14 years before my colonectomy. They didn't strip the mucosa lining and I have chronic cuffitis (UC) in that 2 cm. It is a small area but it's right where there is a lot of nerves and by the sphincter which is used a lot and painful. I think the statistics are only 4% of UC'ers get cuffitis but I did and I'd be leary if I were you as you appear to have UC in the same area now.

I'm not trying to scare you. I'd still have the surgery but wish I knew then what I know now about scrapping the mucosa lining.

Best wishes for your little bundle of joy abojt to arrive in 5 weeks or so Smiler
Thanks so much Marie, I'm thinking when I have the j pouch to definently have the lining stripped away as I think it's my only option to avoid uc in the rectum but I just worry that I won't have muscle control :/ but it may be a risk I have to take as if do get the uc in the rectum I wouldn't be able to have steroids at Allan's I reacted so so badly to them when I had uc prior to the ileostomy and its literally left me scarred for life Frowner

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