Liz,

The retained rectum is called the rectal cuff and the inflammation you describe is called cuffitis. If you use those search terms you will find dozens of threads with quite a bit of information.

Good luck with treating it-

Hi CTBarrister,

I think I was wrong to call it the retained rectum -- I still have my entire rectum, not just a rectal cuff. I just mean I've "retained" it after the abdominal colectomy. I think this would be considered different from cuffitis since there is no j-pouch and it's the entire rectum.

OK, thanks for that clarification. I assume at some point you will have a rectal cuff and when that happens (and J Pouch is formed) this issue could then be surgically resolved? I had the 2 step procedure and had a rectal cuff from day 1.

I'm confused here. Ate they going to remove your rectum in the next step when they create the pouch? Who is your surgeon out of curiosity?
I can only report my experience which may be skewed compared to others on the board. Insm dealing with chronic cuffitis two years since takedown. I take Canasa daily and have been fir zbout 1.5 years and sometimes resort to rectal steroids when really uncomfortable. I also take antibiotics on and off as they seem to tame the cuffitis burning and itching that I often get as my symptoms. I am not aware of any other meds that effectively treat this other than the ones I just mentioned.

Hi Jeane, yes, my rectum will be removed in the next procedure. I'm having the standard three step j-pouch procedure, the steps are:

1) colectomy with end ileostomy
2) remove rectum, create j-pouch, create loop ileostomy
3) reverse loop ileostomy

I know two step is more common nowadays but I'm hoping someone will come along in this thread who had three step and experienced rectal inflammation after step 1, like I am.

I had a 3-step and I experienced what you are experiencing and nothing would help - except takedown surgery. It was a pain in the ass, literally. Hopefully, you're like me and it gets all better after your final surgery. You can continue trying things and maybe one of them will do the trick.

kathy

Hi Liz. I was a 3-steper!!! I had the exact same problem as you after step 1. You can try hydrocortisone suppositories. I tried both canasa and hydrocort supposit. Hydrocort. worked a bit better but not really significantly for me. I eventually quit even using them because they didn't do much for me. I just dealt with it until step 2 when the rectum was removed. (I had a mandatory six-month wait between step 1 and 2 due to how sick I was). when is your second op scheduled?

Don't know about statistics, etc.. But for me, yes I did end up with cuffitis immediately after step 3 (takedown)

Glad to hear it worked out for you Kathy and sorry you ended up with cuffitis, Liz... I guess in this thread it's a 50/50 chance My step 2 is scheduled for May 1 which is 15 weeks after step 1. My surgeon said the absolute minimum wait time (if I hated the ileo, for instance) would be 8 weeks, but he preferred at least 12.

quote:

My surgeon said the absolute minimum wait time (if I hated the ileo, for instance) would be 8 weeks, but he preferred at least 12.

I was 12 weeks with the ileo (between my step 1 and step 2, or your step 2 and 3). I hated the ileo and it hated me back, but they will not do your step 3 until you pass your pouchogram, regardless of how much you hate it. It's probably a good idea not to rush your step 3, though.

My first step was an emergency procedure so like you I had an end ileostomy and still had my rectum. I too experienced a lot of rectal inflammation after first surgery--bloody discharge, some fevers,some pain in the area, trouble gaining weight etc... I was so much better than I was before surgery of course and I was able to work and do things but the inflamed rectum dragged me down. It was a long time ago but I do think I used steroid enemas to see if they would help and some foam. the only thing that made the big difference was getting it removed--and my surgeon was able to combine the 2nd and 3rd surgeries at that time so I didn't need a 3rd which was great--although recovery from second surgery was tough. In my case, I did not feel truly free of colitis until my rectum was removed. I had a lot of rectal disease from the start so getting rid of that real made a big difference. I do not think it is a predictor for problems in the future--I have had a few mild cases of pouchitis over the years--no real problems and other than that I have had great results. Again, the recovery after the last surgery was tough--but that has to do with the whole adjustment etc... but once I was through that I got healthier and healthier. Try not to worry too much what it will be like down the road. I really don't think that rectal disease necessarily means problems down the road.

my story is exactly identical to nbm.

Me, too. Toxic megacolon with a colectomy and end ileo. Six months later, j-pouch formed and hooked up in one step. After difficult first year, it's been smooth sailing and good results.

Had exact same thing. Cortifoam enemas tided me over until step 2

I'm 4 months post op takedown. I too had the 3 step and had my rectum removed in step 2 due to UC forming in it after step 1. Like someone mentioned above, it literally is a pain in the bum! My butt hurt for a good month and a half. Nothing helped prior.

Diagnosed with unresponsive severe ulcerative colitis august 2011
Step 1 April 2012
Step 2 August 2012
Step 3 October 2012
Several complications in between

Hate to be the bearer of bad news, but I essentially had a continuous flare in my rectal stump from the time of my emergency subtotal colectomy, until the stump was finally removed 2 years later. I had bleeding, mucous, pain, spasms--you name it, it probably happened. I had some varying and temporary success with Entocort and later Cortifoam (the Cortifoam worked well to settle things down sometimes for up to 3-4 days at a time, but I had to keep using it several times a week, and at almost $100 a tube--not covered by my drug plan--it wasn't a very good long term solution). Sometimes prednisone is prescribed if the stump is very bothersome, but if you only have a short time to go until your next surgery, Cortifoam might be the way to go since nobody likes the prednizany side effects.

Spooky I think it's the opposite, I'm so glad to hear that you're doing well now post-takedown despite having such persistent trouble with the rectum between surgeries.

Sounds like the inflammation in the rectum is quite common and doesn't mean I'll necessarily suffer cuffitis later, which is definitely a load off my mind.

Strangely I think I might finally be responding a little to the Canasa. I passed bloody mucus from the rectum 5 times throughout the day on Saturday (by far the worst day of this 'flare'), then not at all on Sunday, and only once today. I only have eight weeks left before the next surgery so hopefully I will continue to be able to tolerate it.