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Question For three steppers who stopped after step 1

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Posted 3/20/2013 5:05 PM (GMT 0)
My surgical consultant implied that if one chooses to never bither going on for the two follow on jpouch steps, and just decides to stick with a permanent ileo insteaf, they do not ever have to bother going in and removing the rectal stump - that for most it is never an issue because UC down there normally turns off once the poop never touches it again, and the worst that happens is the odd bit of occasional mucus. Has anyone had issues with the stump? I am all for the less surgeries the merrier, especially anything down near my junk. My UC has never bothered me much rectally, in any case (right side is my most activity)
Posted 3/20/2013 11:35 PM (GMT 0)
I'm still undecided on j-surgery, but technically I'm at stage one of three if I were to decide on further surgery. I have to purge mucous from the stump several times a day, and still bleed from it. The bleeding has phases of being quite bad, although it's not usually urgent or crampy like my pre-surgery days. I guess what I still have would be decribed as Proctitis, although it's not the problem it was/would be, when the rest of the Colon was there.
It's not something that particularly bothers me, or impedes everyday life, so I just live with it. As always, we're all different, so it's not to say you'd get any of those issues.
Posted 3/21/2013 12:48 AM (GMT 0)
I also have proctitis in the stump... it started up after I finished tapering off of prednisone post step one, so I had "stump remission" for about four weeks. I used Canasa and butyrate suppositories for a while but the suppositories were making it worse (I think needing to expel the glycerin increased my urgency) so I just do what SL does and purge mucus/blood a few times a day. My surgeon told me about 50% have inflammation in the stump between steps 1 and 2.

As a side note to SL... if you're going to keep your rectum much longer you should probably have it scoped at some point. It's basically in a constant flare so the risk of dysplasia is increased.
Posted 3/21/2013 2:02 AM (GMT 0)
Yeah I was surprised when the surgeon explained that he has some patients who do the conversion (steps 2,3) 5 or even 7 years out sometimes. He says 7-10 years is about the extreme if the envelope because at that point the sphincter muscles become too atrophied to redevelop, but he generally has rarely seen reasons to go in and remove the rectum. I agree about the scoping of course- a quick and easy biopsy vs colonoscopy and obviously no prep.
Posted 3/21/2013 8:26 AM (GMT 0)
I must admit that I thought there would be a time period whereafter a scope was required, and the Hospital would contact me. Maybe two years on from surgery I should be thinking about contacting them myself?
The time period for pouch surgery also bothers me, I'm not in the financial position to get it done for several more years yet, as I can't afford to take the time off work. I don't actually know if I'll ever opt for it, but it's probably cutting it fine if I do.
Posted 3/21/2013 12:56 PM (GMT 0)
Silent Lucidity- my surgeon did say beyond 5-7 years is where he begins to worry about it being too long. For less than that I dont think there's the slightest issue.
Posted 3/21/2013 1:55 PM (GMT 0)
My opinion is that if you're staying with the permanent ileostomy, get the rectal stump removed too. You can save yourself all the grief of having to pass the mucous all the time (and wearing the panty liners to stop it staining your underwear). Why keep it? After all, you'll never be using it again!
Posted 3/21/2013 9:44 PM (GMT 0)
5-7 years from colectomy to reversal sounds very, very long. People who have only 3 months from start to finish have mild sphincter weakness. I had to wait 12 months for various reasons, and while my muscles were intact and healthy, I still had to do months of excercises and electro-stimulation so that they could get back to normal strenght and re-coordinate. It's the same as months of disuse for any muscle. But several years would mean very seriously doing Kegels at leasstn 10 times a day for the entire duration until reversal, otherwise the muscles would be just about useless. Building them up again from scratch would take a long time.
Posted 3/22/2013 2:31 AM (GMT 0)
I'm between 1 and 2 (of 3). I have about 8 inches left and it's tacked to the front of my body. I too have "proctitis" even though I'm on Humira. The remaining colon is also causing major arthritis issues. So if I stopped I would probably require another surgery anyway to remove more of my colon.

I know that I should be scoped after two years with the remaining rectum if I don't get it removed.
Posted 3/22/2013 3:06 PM (GMT 0)
This is a great post Pro because it explains my condition. I'm almost two years past step 1 and seeing the surgeon in early April to determine if he can do the jpouch. I'm not certain I want to even entertain that idea unless he sees from the next scope that everything is really good. Historically, the stump bleeds on occasion and I expel mucus every day or two but it doesnt bother me whatsover as I do it in a controlled manner and it's only ever felt urgent once or twice. So I'm happy to see that some people have decided to keep their stump AND have no further surgeries unless necessary. My surgeon seems to be insisting that he will take it out if I'm not a candidate for the pouch or elect to keep the ileo. In fact at the last consult he told me that he wouldnt know absiloutely until he opened me up and that he would make the decision at that time based on the condition of the stump and his ability to attach to it. Still undecided......
Posted 3/22/2013 3:58 PM (GMT 0)
Here's an interesting find on pubmed re. rectal cancer risks for the retained stump and opinions on its removal. I gather that surgery to remove the stump is as rough to recover from as any ither if these surgeries, and this has the added risks, like jpouch surgery, of causing long term damage to sexual or urinary function because it is such a tight, delicate area to operate in. So not sure what I'll do long term (if I dont proceed to steps2&3) beyond getting it biopsied a lot under some sedation. Am certainly going to research this topic more after my upcomng surgery.

www.ncbi.nlm.nih.gov/pmc/articles/PMC2780074/
Posted 3/22/2013 4:13 PM (GMT 0)
Man im getting confused...you want to remove the rectum and scrape the cuff as these things can still get inflammed???
Posted 3/22/2013 4:44 PM (GMT 0)
Pro, that's the principle reason for me considering no more surgery !! the bag works great...and so does everything else !!! Doc told me that, although chance of impotency is low, it's still a risk and although decrepitude is rapidly approaching, I'm hesitant to risk losing something that's still very near and dear to me !!
Posted 3/23/2013 2:29 AM (GMT 0)
Alive & Well- I'm with you. If I can get slick with the bag setup, and I am very hopefull I will be, then I think I want to stop at the one surgery. The cancer risk for the stump does concern me though- hoping there is data on lots of annual biopsies being a fairly reliable defense, because something tells me the "some day" removal kf the rectal stump will never come given the thiught if anither surgical recovery and a more complex/delicate one near my junk at that.
Posted 3/25/2013 3:55 PM (GMT 0)
Amen to that Brother ! My bag works real slick so I don't want them meesing with my junk unless it's necessary or when the doc has a look next week, he gives me excellent feedback!! Stay tuned !
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