Surgeon's opinion about J-pouches vs. ostomies for patients with well-controlled ulcerative colitis

Sound about right to me. I waited a long time for surgery for exactly that reason. My UC was well controlled, even in full remission, until it wasn't. Even after I started going back downhill I had to calculate my current frequency and discomfort with the frequency and discomfort I was told by family members that I would experience with a Jpouch for the first several years.

So I waited. It wasn't until the unbearable pain, trips to the hospital, and frequency increased to over 6-8 times a day that I decided to have surgery. Otherwise, I would have kept trying to manage my UC. Life with a Jpouch is no fairytale. It's just hopefully much better than the nightmare of UC. It's all relative.

I had a nurse tell me something interesting. She said that it made her sad that people considered surgery as the final option and waste so much time suffering - especially because she has witnessed so many happy Jpouchers. I haven't completed the final surgery yet, so I can't speak on that. However, just judging by the agony of the first 2 surgeries over the past 9 months - there is no way I would have done this unless it was absolutely necessary. But I hear differently from others who went straight to surgery right after being diagnosed. To each their own...

And yes, the story will be much different if you don't have UC. My biggest fear has always been that we will eventually find out that I have Crohns and all this would have been pointless. So maybe focus on figuring that out first and don't worry so much about 'to Jpouch or not to Jpouch' right now. You will have plenty of time to explore all of your options once you have an accurate diagnosis.

What amazes me is the difference of opinions. Every surgeon will have his own opinion in what he thinks is best for the patient.

I suffered with ulcerative proctitis. In 2008, after suffering ten years with the disease, I was hospitalized for eight days....my symptoms...6 - 8 bowel movements every morning which were uncontrollable, bleeding profusely from the rectum and extremely high BP from the prednisone. After I was discharged from the hospital, actually feeling WORSE than before I went in, I sought out a colorectal surgeon here in south Jersey. He had the reputation of one of the "best" in this area. Well, if he were considered the "best" I would have cringed to visit the "worse". Long story short...his advice..."OH NO...NO NO NO surgery!!! You will be in worse shape! Now you go 6 - 8 times a day...well..after surgery you will be going at least 10 urgent times a day." This, coming from a surgeon!!! Needless to say, I left that office feeling very depressed. So, I struggled along for the next two years taking the advice from my GI doctor...trying Remicade then Humira..still prednisone dependent.

In 2010, I had reached the point of no return. You all know the rest. I found my surgeon online. He told me I was not a candidate for j-pouch, but, did I give a rat's behind? NO NO NO! I just wanted my life back! So, I have a permanent ileo. It works like a charm, but, he I now find out that even though it was my rectum which was badly diseased, he left in the anus and...according to my new surgeon (because my original one retired in 2013)...a bit of my rectum is still in there and now the UC is back in there. Are my symptoms as bad as they were prior to my operation? HELL NO! But, I do have some pressure and discomfort. I had extensive biopsies which show no dysplasia or cancer. The surgeon said ..no operation, it would be too much for me at this point. I am 69 yrs old and have good quality of life. I am seeking another opinion this Tues..just praying he is in agreement. Because, actually, if this UC can be controlled with rectal meds..I am all for that.

Why does your doctor or surgeon think you have Crohn's? Have you gotten second and third opinions? Recognizing that misdiagnosis happens, I think it's best to get some indication as to what disease you're working with before you come up with a treatment plan.

If it is Crohn's, then I would try to stay away from surgery: However, if the low grade dysplasia was found in the colon, couldn't they just do a colon resection and take out the part where dysplasia was detected?

If you get more opinions that indicate UC, then I would lean toward surgery given your age. If you were 90 years old, then leave it be; but why not take care of it now while you're still young when colectomy might be the most pragmatic and safest decision for your health?

The decision between ostomy or jpouch is personal preference. Like NSSG, I didn't want to purchase supplies and have a bag attached to my body for the rest of my life, so I opted for a jpouch. You could go through step 1 of 3 to try out how you like living with an end ileo to see what it's like.

I don't agree with his opinion either. But, everyone is entitled to their own. A different surgeon would have a totally different opinion than that one. It's what makes the world go round. You have to make the best educated decision possible on the info you get. That's why it's important to get second and third opinions.

CD is a different ball game. You don't want a j pouch with Crohns. But if it comes down to you having UC and the dysplasia takes a turn for the worse and colon removal is recommended, then I would opt for a j pouch over an ostomy. Just my personal opinion based on my experience.

PS- I had a GI who was stuck on the thought that I had CD. I ended up with a new GI doc who confirmed that I indeed had UC and I had j pouch surgery. Make sure you get ALL the proper testing done to rule CD out. Get a new GI if you have to.

Given how little most doctors care about side-effects or quality of life, god knows why anyone would trust what they have to say about post-surgery experiences. Basically, as long as your labs are good and you're not about to keel over in front of them, you're doing "fine" in most doctors' eyes. Yes, I'm being cynical, but it's cynicism gained after 15 years of experience.

CD isn't all THAT different to UC either. There've been plenty of people with UC who've had a miserable time with their j-pouches. They shouldn't have done - they don't have Crohn's. But they have.

I was in the bathroom emptying at least 5x a day with my ileo. I don't understand how that is any easier than going 5x with a jpouch? With an ileo 5x and you need to buy supplies and wear a bag, that's more inconvenient in my book. I had no problems with my end ileo, but it wasn't a walk in the park, like having a healthy colon either. You still have to empty quite often. I bet youre in the bathroom just as much as people with a jpouch. I will tell you when I get reconnected... that's barring complications of course. If you end up with pouch problems, sure, an ileo is much better.

letthepeoplesing said...
If you read most j pouchers stories they almost always end with "Its better than UC!" I don't have that comparison so in MY experience, a j pouch was the wrong option.

Exactly. The sort of people who have j-pouches are the ones who, by definition, have the severest cases of UC.

But imagine never having had UC and going straight to a j-pouch: I'd be distraught. The same would be true of an ileostomy, to be fair. I'm honestly not sure what I would have found worse. I think in some ways an ileostomy is easier to manage, but all the faffing about with supplies pisses me off. A j-pouch would be just like having mild Crohn's to me - I can't see any difference, other than I had fewer BMs a day with mild/early Crohn's.

Post Edited (NiceCupOfTea) : 10/24/2015 6:11:11 PM (GMT-6)

Anyone who has a permanent stoma is going to end up with an end ileostomy, not a loop one - loops are temporary. If you're gonna make a comparison with a j-pouch, it should be with an end ileostomy only.

Most of the problems I had with mine were psychological. I just didn't like dealing with boxes of supplies, worrying about when to order new supplies, worrying about when they would arrive, etc. It's a kerfuffle. Plus at the back of my mind there was the fear that society would collapse and I would be screwed: I wish I could say I was exaggerating, but I'm not particularly. I suppose it boiled down to having a stoma and being dependent on specialist supplies made me feel more vulnerable.

But things like gas, fast output, skin issues, etc. were rarely a problem for me. In the first year I would have to get up once a night to empty the bag - that dwindled to zero over time. If I compare that to what I'm going through now, all I can do is laugh. Hollowly. On the downside, I'm a stomach sleeper. Can't change that, so I had to adapt with an ileo.

I can't claim I ever loved having an ileo, but I do realise now there are worse things than having one. Like being reconnected and going through takedown hell.

Judy2 said...
Frankly, I've never heard of anyone with well-controlled UC having a colectomy for UC. For most people, it's more or less the treatment of last resort, when other measures aren't controlling the UC. I wonder where he found the population that inspired his statement.

The people who are at risk of bowel cancer, I should think. (Most of whom won't have any form of IBD, but a few will have, like the topic creator.)

NiceCupOfTea said...
Anyone who has a permanent stoma is going to end up with an end ileostomy, not a loop one - loops are temporary. If you're gonna make a comparison with a j-pouch, it should be with an end ileostomy only.

Most of the problems I had with mine were psychological. I just didn't like dealing with boxes of supplies, worrying about when to order new supplies, worrying about when they would arrive, etc. It's a kerfuffle. Plus at the back of my mind there was the fear that society would collapse and I would be screwed: I wish I could say I was exaggerating, but I'm not particularly. I suppose it boiled down to having a stoma and being dependent on specialist supplies made me feel more vulnerable.

But things like gas, fast output, skin issues, etc. were rarely a problem for me. In the first year I would have to get up once a night to empty the bag - that dwindled to zero over time. If I compare that to what I'm going through now, all I can do is laugh. Hollowly. On the downside, I'm a stomach sleeper. Can't change that, so I had to adapt with an ileo.

I can't claim I ever loved having an ileo, but I do realise now there are worse things than having one. Like being reconnected and going through takedown hell.

lol, i've never minded supplies so much. I don't like the idea of needing them, especially if I have out-of-pocket costs, but the actual ordering and having them around I am okay with. I like trying new stuff, it's kind of fun. I get a sample and I look forward to giving it a shot. I always have extra products on hand. I don't like when I get down to 2 wafers, especially with this loop. With my end, I didn't care because I knew I would get 7 days. This thing I could ruin 2 wafers in a few hours. I need a full box on the shelf. I also usually have a few different items that I can use (one piece, 2 piece, different brands, mini, closed), sometimes I feel like wearing one thing over another. I get my items via fedex the day after I order so timing isn't an issue - unless it's something new and I need a "prescription", then it could be a few days. It's not fun with this loop because it's very active and I change way too often to play around, but with my end, I could try anything and it was no biggie because everything worked as intended.

I have thought about that, like "walking dead" situation, I would be doomed. I mean, how much can you stockpile and carry around? It would be crazy... luckily that is fiction and it's not going to happen.

What you're currently dealing with sounds like living with active UC and living with the end ileo is definitely way better. Not sure if the loop I have is though. Changing every day is a pain. I guess once I change, I usually get 24 hours, and 24 hours without worrying about pooping my pants is still better than active UC.

kiptyn said...

3) Pluot-you are so wise! I always love reading your posts. I think you make the best point. If I have to have surgery, I shouldn't be comparing the options with my QOL now. I should be comparing the QOL that each future option will give me. I don't think a perm. ileostomy would be bad but dealing with supplies and what sounds like a messy emptying process sounds less convenient. Also, I pee a million times a day so I'm in the bathroom all the time anyway.

Agree on Pluot's wisdom.

The one factor that makes this point hard is evaluating risk with each option, because the QOL outcome is not certain with either choice, and the possible complications have different risks and different costs. In many ways your situation is harder emotionally than mine was -- I was so, so sick and had tried every drug. I didn't feel like I had much of a choice, and most likely having Crohn's, a J Pouch wasn't really an option either. So even though I've had a complications and extra surgery and limitations, I hold onto how sick I was, and how much better I am now (even if in some ways I still have limitations).

So, I think keeping in mind that you're having surgery because you have a young child and want to do whatever you can to be w/him is helpful.... and you'll make the best choices you can in the face of some uncertainty... and hope for the best, deal with anything that isn't quite the best.

NiceCupOfTea said...
it's not about comparing your post-op quality of life with your pre-op quality of life

To me that's precisely what I'm comparing it to.

...

#beyondtired #beyondfedup #beyondlonely #beyondpointless

The "it" in my post was referring to a logical approach to decision making. As I think we've discussed to death, your propensity for comparing pre-illness and post-op QOLs is most likely a symptom of your depression, not a rational way to approach decisions.