Losing the colon. Need to make a decision

Hello.

So, colon needs to go. Male, UC 20 history, relatively mild, now showing pre-cancers, have stricture, no dysplasia. The short story is I'm hung up on J-Pouch, IRA, or permanent ileostomy. My two biggest concerns with the surgery option outcomes are 1 - sexual dysfunction and 2 - bathroom trip frequency.

IRA is being offered as a non-traditional option by my surgeon as the extent of UC in my rectum is limited and my history suggests any proctitis would be manageable with enemas. The selling points are a bit less frequency on the bathroom trips and less mingling in the pelvic floor during surgery (alleviating both sexual dysfunction and bathroom frequency concerns).

Concerns with IRA is the continued cancer risk - minimal, but there, and I'd need yearly screenings.

So, it's like I'm weighing one option - being able to go normally and not disrupt too much in there, but still having to take meds, versus the proctocolectomy which scares me with how much is taken out, j pouch issues if I went that route...

very tough decision. Would really like to hear from any IRA / UC cases out there like me. Also, I'd like some reassurance that if I go with a perm. ileostomy, it's not going to ruin my urinary and sexual functions. I've got a great surgeon - just need to make an educated decision.

I'm having an IRA but only because I'm one of the few Crohn's patients who are actually in a good position to have an IRA (i.e. no history of fistulizing or perianal disease and limited rectal involvement). Before surgery, I had Crohn's in the terminal ileum (as well as my colon of course), and so no surgeon would touch a j-pouch with a bargepole in my case.

You can try out an ileostomy first by having the surgery in 3 stages. If, after the 1st stage, you are happy with the ileostomy, you don't have to have surgeries 2 and 3, which include the creation of the j-pouch and takedown. The only disadvantage to that is your rectum would need to be left in, if you were thinking of having a j-pouch later. You would probably get diversion colitis if that's the case. Usually it's mild. I have it. The main symptom is passing mucus. I also have the occasional strong urge 'to go' - urgency and cramping usually coincides with the passing of blood, but it does only happen occasionally.

If you don't mind technical articles here's one which compares IRA vs IPAA in UC patients.

www.wjgnet.com/1007-9327/pdf/v20/i37/13211.pdf

Edit: I'm a bit confused. You say you have no dysplasia but have pre-cancers. I don't know what the difference is, but dysplasia would almost certainly rule out an IRA. I personally wouldn't recommend an IRA to a UC patient anyway: the rates of follow-up surgery are far too high. There can be a lot of complications with j-pouches, but the rates of j-pouch failure necessitating surgery seem to be far lower than for an IRA.

Post Edited (NiceCupOfTea) : 7/1/2015 8:04:50 AM (GMT-6)

Thanks everyone (and thank you Sue for what you do!)

I'm 90% sure I'm going with permanent ileostomy. I just can't deal with frequency, urgency, fear of soiling with the pouch and likely the IRA - and my career isn't suitable to it. Having a bag puts me more in control and I need that.

I just need some reassurance that everything else is still going to work 'fine' after being cleaned out. I know there's low risk of complications, but would like to hear experiences from others who've had Proctocolectomies and how their other functions are working. I know.. silly.. and I really don't have a choice unless I want to become a cancer patient and here I am wondering how everything else is going to be...

I have a perm end ileo. rectum removed & sewn shut. Love it! Well- compared to UC, dysplasia, & strictures, that is. I chose that over a jpouch, because I could not deal with 2-3 surgeries, or the potential for problems like pouchitis, pouch failure, etc. I did a lot of research prior to making a decision- spend time on j-pouch.org as well as ostomy forums! Turns out that I was not even a candidate for a jpouch due to a fistula. Anyway- I'm female, so can't speak to male sexual dysfunction. But personally, things "work" fine in that department, if not better since I no longer feel ill or have abdominal discomfort or fear os accidents. My surgery was pretty textbook- not 1 complication or problem. In the hospital 5 days. The rectum removal takes the longest to heal, but it does generally heal-some people seem to have complications. The bag does give you a measure of control- I last emptied before I came to work this AM, about 5 1/2 hours ago. My  output tends to be highest overnight- so I get up in the AM, empty a lot of stuff, then empty maybe 4x thruout the day??? I've been 100% happy with the end ileo- it's so easy to live with. And- I eat & drink anything & everything, no restrictions at all.

There is no perfect surgery; all of the choices have pros and cons. What's important when making a decision is to review your lifestyle against the choices. The best surgical choice is the one that you think will work best for you.

Sue

By "reassurance that everything else will work 'fine'", I'm assuming you mean with your penis like you mentioned in your first post?

There is a risk that nerves will be damaged with any of the surgeries, however it is a very small risk. If I remember correctly, there is a larger risk involved in the jpouch creation surgery just because there is so much more work going on in the area for a much longer period of time. Again, however, it's a relatively small risk, albeit one that can have serious consequences if something were to go wrong.

From personal experience, having had a three step jpouch procedure, I think the catheters did more temporary damage than the surgeries. My urine stream and output was pretty weak for a while after both surgeries, and it felt like there was a new pathway, so to speak, when coming out, from scarring or whatever from the catheters. It's been a year since my last surgery now and everything is fine. I can't even remember when everything felt "normal" again but now that I think of it, it must not have been too much of an issue for me to even pay much attention to after a while.

As for sexual function it's been a similar story. Erections were pretty weak at first, but still obtainable. I don't remember having any real sensation issues or problems.

I will say that heading into my first surgery I was incredibly sick - I weighed 100 lbs and my hemoglobin level were below 6, I was extremely weak, etc and my sex drive was non existent. It took a while for me to put on weight, and on top of the trauma of being sick and surgery, I'm sure that had a lot to do with my slower "bounce back" in that area. Over the year things have gotten much more back to normal, and again, until reading your question I hadn't even really thought much about when or how long the issue went on for, as everything still worked.

Unfortunately it's one of those things where you can't predict what the outcome will be, you just have to trust your surgeon and know that the odds are overwhelmingly in your favor.

I can't comment on the sexual dysfunctional part as I'm female, but I also had a subtotal colectomy - I have my full rectum left. I had this surgery for sort of the same reason though, fertility issues - I had an ovary removed when I was 19 and my surgeon didn't want to do more pelvic surgery on me to potentially reduce my risk of infertility more. I do still pass mucous, there doesn't seem to be any regularity to it. It causes me minimal issues, sometimes I feel pressure or cramps in that area but it hasn't impacted in my life. I had my 6 month check up last week, GI said everything sounds fine, things are still healing so not to worry. I've to go back in 6 months, as he said they usually do yearly scopes of the remaining rectum, just to keep an eye on it, making sure no inflammation or strange things happening there! Which I'm happy enough with!
My experience with my ileostomy has given me my life back, I don't feel like there's any restrictions on me. I've been on a plane to Disneyland Paris, on rollarcoasters, on a zipline, I can wear whatever clothes I want. I'm learning how food affects me, so if I think I won't be able to empty for a while, I know what to eat that won't give excessive output (mainly large amounts of fruit/veg). My recovery was quite hard, I was very sick beforehand. But I'm healthy now!
There is a learning curve with it, but you can adjust well with little or no impact on your life. It adds about 5-10 mins to my routine when changing, and takes about a minute or two longer in the bathroom when I need to empty.

Hi Solomon. Sorry to hear your J Pouch recovery hasn't been going well. I hope with a little more time, things settle down for you. But you see, this is the problem. Even though I have a near 25 year history of UC (I'm 40, btw), I only had two significant flares that were controlled with pred. Otherwise, it's just been mild to moderate symptoms that at worst, I get some loose stools. Blood shows up now and again. Most of the time, I'm going once a day and manage the mild symptoms well with Asacol and enemas as needed.

Moral of the story is - j pouching would be step backward for me personally. I am comfortable with the permanent ileostomy option. I'm married, have good self-confidence, and could be called less modest than the average guy.. lol. But it's a major lifestyle change - and I've been on the fence with options for weeks now.

I had another consult with my surgeon today. She arrived at the IRA option after consulting with my specialist, looking at my history, and overall colon health. She says I'm a good candidate for the sub-total colectomy with ileo-rectal anastomosis given the limited colitis involvement in my rectum, and localization of my growth / stricture. The plan would be to keep a bit of sigmoid colon and entire rectum - giving me about 20 cm to work with. It would be one surgery. I'm being told 3-5 bm's per day once things heal up and settle down. I will still need cancer surveillance at least yearly as there's still an elevated risk - and will likely still be on maintenance 5-ASA's for any active colitis.

I'm really thinking about giving this a shot..

Hi Marianne. Yeah, I didn't want that statement to come out like that. I'm still coming to grips with losing a colon that's been pretty good to me - despite the odds. And speaking of odds - you are absolutely correct, there are many many more happy J pouchers than there are unhappy.

I feel as though an IRA is attractive option for me being one-stop surgery, and having better odds at reasonable bowel frequency as it's a less invasive procedure. I can deal with going in the morning, maybe after a lunch, and before bed and calling it a day. I can't deal with possibly being the 4-8 time per day person, waking up at night to go, which seems more likely with a j-pouch. And yes, I could quite possibly be in trouble with an IRA as well. Who knows. Again, it's just been presented as an 'easier' option given my history.

ahhh.. decisions!