Cancer risk in unused colon & diversion colitis..

I've been getting increasingly worried about the cancer risk in the section of colon which is left unused inside me, plus I also have some diversion colitis symptoms. None of this is serious at the moment, but just thinking long term.

I went to see my surgeon today and he wasn't hugely helpful. Here are my questions and I'm wondering if anyone on here has any suggestions or experience ? He does tend to be cautious and likes to be minimally invasive and take minimal risks.

1. I've asked this on here before, but what is the longterm risk of leaving my colon inside forever? My surgeon said there is no scientific evidence to say that diverted colon is more at risk of developing cancer than a normal active colon. He said that they don't really know. Does anyone know of any papers or research on this subject? I've heard many people on here talk about having regular colonoscopies and scoping of the rectal stump - but is this 'risk' of cancer really true and where did this originate from?

2. It seems I have diversion colitis - mucous, abdo pain and spasms - although not serious, just annoying. I asked about treatment and he said to leave it alone. I've heard others (Rosemary) talk on here about using short-chain fatty acid enemas and steriod foams and things, but he said this was just for the rectal stump and won't make any difference to the whole colon.

Does anyone have a view on any of this? or know of any research? should I be asking for a second opinion? I'm not about to put myself forward for more surgery - I'm better than I've been in 2 years at the moment - but I'm also not keen on leaving my colon in there and risking cancer.

Grateful for advice or opinions. TIA

Windy - Have just been reading more about your story.. and it's very similar to mine. I had diverticulitis at the age of 37.. totally undiagnosed. Previous abdo pain only weeks earlier had been put down to 'ovulation'! My diverticular then perforated and I had full blown peritonitis, was v sick. Cue emergency partial colectomy, temp ileo and then reversal - 3 operations in as many months. THEN however.. nothing worked, I ended up with some sort of dysmotility which no-one could get to the bottom of. Couldn't eat, was horribly constipated and nothing worked. Was bloated like 9 months pregnant and in so much pain couldn't sleep at night was utterly miserable. So after 9 months of living on 'colon prep' laxatives, I begged Dr to put Ileo back - this time as an end. Been much much better since, but still feels slow and easily obstructed at times.

I still have my rectum so like you I could still have an ileorectal connection, but really not up for any more surgery just yet... and I like the control the ileo gives me. Not sure I'd have that with the IRA and also not sure if the dysmotility would be any different. He says I could have it done any time - even in 10 yrs time.. but I'm really happy with my ileo and not sure I want to risk anything else. I'm not sure you need to rush to make up your mind..

I don't get mucous sucked out or anything either.. I don't have problems passing it. It's nearly every time I go for a wee! sometimes I have to rush to the loo as the urgency is there. Very weird! sometimes I sit there passing mucous, having a wee and emptying my bag all at the same time - multitasking at it's best I do get stabbing pains at times though - like stop what I'm doing pains - more in the rectum than the abdo or pelvis which are agony. I don't see why that can't be treated with steroid foams or the short chain fatty acid enemas that other people have talked about.. it'll still get to the rectum even it it doesn't reach all the way round the colon. Anyway.. will have to see how it goes.

I don't think there is much data on this as most people with an ileo have their entire colon removed, so there probably isn't enough data to accurately measure the consequences of leaving the colon and what might happen, especially long term. The stats I can see in research papers indicate the risk of cancer is no higher than in a normal colon.. but I guess if we developed it we might not notice symptoms in the same way, and therefore miss it unless we had regular scopes.

Maybe someone else will be along soon with more info! likewise let me know if you find anything out. Sarah

You are right regarding that we might not notice the symptoms and therefore miss it. That's where I read that people get YEARLY rectal scans. But I don't to run that risk, period, not to mention going for a yearly rectal exam for the rest of my life.

I pass mucous less frequently than yourself. After my surgery, I didn't know what the stabbing pain in my rectum was, I assumed it was because it's there and shrinking and this is how it is. It is agony! It was only until recently that instead of waiting for the mucous to reabsorb, very painful, better alternative is use the toilet and let it pass. Since it's not so bad, I'd rather pass it myself, than use or do something that I'm unsure of.

Yes, you are much like me...you were my only diverticulosis person here until recently...there's a newbie. I was 37 when I had my surgery, currently 39....much alike! I was diagnosed at 32, had infection in ascending colon, colonoscopy few months later revealed diverticula in the entire colon. I felt like a ticking timebomb. Was fine for 3 years, then the infections started and never stopped. My surgery was elective, was always receptive to Flagyl and Cipro, so no emergencies. I was connected during surgery because it was elective and not emergent, but later became septic because IRA disconnected, so had an ileostomy. I was in such bad condition, I needed a long time to heal. With this time, I've understood more, believe there's more to this and like you stated.....I'm not in a rush.

You had colonic inertia. You are a really brave woman...I remember your story back then and how you were suffering everyday after takedown. I also really commend your surgeon that in less than a year from takedown, he put your ileostomy back. Most doctors wouldn't do that, their more of the wait and see, give it time.

I believe I too have some underlying dysmotility or possible autoimmune. It just hasn't manifisted itself entirely. My esophagus strictures (dysphasia) at times (had a manometry done prior to colectomy), how in the world did I have diverticula everywhere with several big mouthed, also I have the 'lupus' butterfly facial skin thing (my face is always red) and during surgery I had a full blood clot in the vein to my liver. It's too much to overlook, very complex and mysterious. Like you, I feel so good, better than I've felt in years. I'd LOVE to be all hooked back up again, but the what if's are torture. Thank God there's this forum of people that understand because the people in my life don't and it's really annoying and makes me angry because if I thought I would be fine....I'd do it by now. Obviously my reservations are called for, so why do they feel like they have the need to make my medical decisions for me? I'm sure you get the same. They might mean well, they all tell me to 'try'. Try to what I ask...to possibly ruin my quality of life that I've fought so hard to get back?

I'll ask my surgeon about this. I too read that the cancer risk of a diverted colon is no greater than of a functioning colon. For me, my rectum could be removed through my anus, so no laparotomy. We are both so young, so like you said, there's not much long term data cases. I'll keep you posted if I find anything out! PS-How in the world do you multitask to that level...lol?

Mystique, any transplant requires you to be on heavy immunosuppressive drugs for the rest of your life. There is some controversy w/the hand transplants because of this -- you can live w/out a hand, is it worth the drugs? My plastic surgeon is actually involved in a trial where they are giving people bone marrow transplants at the same time as hand transplants, in the hopes that they will need fewer drugs, because otherwise, the cost/benefit often doesn't work out. With a colon, it's a big filthy organ, seems like that would introduce other issues....

I think IBD is very complex, and it really is challenging .... there's a lot of $$ in it right now, as people get it young, don't die of it, and take lots of meds.... so lots of research going on, although far too pharma based in my opinion.... but when I was diagnosed, there was one gene that had been isolated, now there are something like 170 that have been found to be involved in Crohn's...

Anyways, a bit OT with Sarah and Windy..... I don't know the answers for you, but wondering is the increase in risk of colon cancer due to diverticulitis like that for ibd? My gi said that with chronic colitis, the official lifetime risk of colon cancer is 30%, but he guessed that w/the kind of inflammation I'd had, it was probably more like 50%. If you're having diversion colitis, that means inflammation, and inflammation increases the risk of cancer -- I think the level of inflammation is the issue, not whether the colon is in use.

It's a tough issue.... hard to think about going through another surgery when you're doing well based on an unclear risk.... but some treatment for the inflammation (enemas etc) makes sense to me as a possible way of lowering the cancer risk.

no an inactive colon is at no more risk than an active one. reason i could not pass mucous was due to all my scarring from my original pelvic organ prolapse surgery and scarring of the muscle that controls rectal angulation and the sigmoid stricture.

my current doc who redid my stoma took my colon out jeeze i am worried about scar tissue from this all i did was ask her to suction out the mucous but the colon is gone now.

the steroid enemas are just if you have a flair of diversion colitis which includes crampy abdominal pains and bleeding coming from the rectum. i just had one case in 4 years while my first ileo stoma was all good. it cured itself. to go back to a reallyy good working ileo stoma i would gladly go back to that.

my current ileo doc who has just redone an early stenosis of my ileo stoma on emergency basis was worried about mucous perforation as she said there was a hardened ball of mucous in my cecum. each doc has their own ideas.

sarah i know this is an old post but no worries colon cancer is either in your dna or it is not. soon you may be using what is left of yours dependent on your decision. but unless colon cancer is in your family no worries. and if you can poop out the mucous and decide to keep your ileo then i woulod leave the reamining colon alone. its all good. Rosemary

Interesting thread. I still have an unused rectum too and it causes me no issues at all really- just a voluntary squeeze out of some mucus, usually liquid mucus, about once every 3 or 4 days, 9 months or so since my subtotal colectomy. For now I have no pans to ever have it removed UNLESS an annual scope with biopsies shows cause for concern. Indeed I'd get second opinions n biopsies and maybe do another set a few months later before resorting to surgery. Hopefully if it ever comes to rectum removal, it is a much faster recovery than the subtotal colectomy, as I assume the surgery doesn't involve any abdominal incisions? My biggest concern as a male would be that surgery being close to nerves such that it could trigger ED or impotence. I guess I should consult some surgeons just to be ready if the day ever comes again.

One thing about the annual scoping for a rectal stump is that it requires no prep or fasting and is a quick in-office procedure. For those who have been doing these, how many biopsies are recommended for a solid sample in a rectal stump? I recall reading that around 40-50 are needed for 95% confidence in a full colon so I am thinking 6 or 8 or so be adequate for a rectal stump. Also, how much post scooe pain and recovery from the injury/trauma of the biopsies is there? Should I get some steroid enemas ready for soothing it from any brief post scope flare there? My stump has been completely calm and trouble free.

Post Edited (Probiotic) : 2/23/2014 8:47:52 PM (GMT-7)