J-pouches are a physiologically bad idea

Solomon Seal: The impotence thing worries me massively. When my pouch was created the surgery took two hours longer than scheduled, as they had to wade through my adhesions before beginning the construction and proctectomy. I was told that all the adhesions would be back post surgery. Given the complicated nature of pouch deconstruction, and the further cutting needed for adhesions, I would imagine the risk to nerve endings down there must go up. It's for this reason that I'm not sure I would want pouch deconstruction. So, one then has to ask, what's going to be worse: sticking with my operational, dysfunctional pouch, or a return to Ileostomy with a decommissioned pouch left "in situ"?

So much has changed in my 15 years with the pouch. Then it was the procedure for life. Pouchitis, easily fixed. Not to worry. Pouch removal, no one spoke of that and if so what's the big deal?

Look what happened to me, emergency ostomy surgery because meds failed, all meds, and all the lovely reactions I had to deal with from some of them. Yes, I had yeast from the antibiotics, paleo diet did nothing, even tried FMT. Why some people have issues I just don't know. If I had to have this procedure done now I certainly would not go forward with the pouch given what is coming out about it now.

So now I'm older, trying to recover which is very hard, and may be facing another awful surgery to remove it. Oh, back then, we can just remove it, now it's like oh its a big major surgery, so major that my surgeon did not even feel I was well enough 3 weeks ago to do that.
Now I'm stuck with a leaking loop.

Ps when my pouch was working it was great. And with all the issues I miss it. Maybe I'll feel differently in a few months when I am doing better hopefully.

Marianne, it's great that you share your positive j-pouch experience, the forum doesn't get enough of that. I want people to choose the jpouch if they *really* feel like that's what is right for them. I'm making a critique of how the medical practice educates and makes decisions for patients regarding what happens after colectomy.

ByeByeUC said...
Lots of people are in need of surgery and it's not all doom and gloom.

I agree with this. Personally, there was little hope remaining for my colon when it came out and this is true for other people too. However, you make the same mistake that my doctors did. When you say people are in need of surgery, you seem to be implying jpouch surgery. Nobody *needs* jpouch surgery. We needed colectomy and something new to poop into.

And I do not think the jpouch should be the procedure of choice because of the medical reasons in my original post
- Losing 50 cm terminal ileum
- more adhesions due to more operating required to construct, move, connect pouch, create temp ileo.
- creating anastomoses, which can then form surgical strictures
- creating a replacement for the colon that seems to be susceptible to the same autoimmune issues

Further, I do not agree that success is merely measured by whether a patient keeps their pouch or not. There is a group of patients who just accept a lower quality of life. Also, while I know CCF's statistics, asking at a major German hospital, they say they see 17% pouch failure. I went into surgery keeping the "95% success" statistic but I'm skeptical of that now.

J-pouch is a good option, but I think that patients (including me) are hurt by the "default" status that the j-pouch enjoys. End ileostomy is mainly presented as a plan B, when I think the ileo is better if a person is able to overcome the issues associated with life as an ostomate.

SL: It frightens me, but if I feel like the risk is overstated. Generally, looking at any operation where the rectum is totally removed and sewn shut, impotence seems to happen much, much more often to older men (who may have marginal ED before the op). I think that the risk for our age group is quite low. It's just that if it is even a 0.01% chance, the possibility is just so frightening. It was definitely on my mind going into my initial surgery. If I decide to abandon jpouch, I don't think I would let this stop me.
For you, I would not jump to conclusions until you have your next scope. Maybe you have acute pouchitis that a single round of abx would resolve.

Gmark: Yes, it's hard for me to see how this solution is really a good enough replacement for the colon.

ByeByeUC said...
I suppose it's presented as the surgery of choice because it's the closest thing to returning to life as usual after surgery. You still sit down and expel feces on the toilet out your bum. Let's face it, were weren't born with our intestines exiting outside our bodies. So for a good amount people....not all.....but a lot......the ileosotmy wouldn't be their first choice. If my j pouch fails tomorrow I know I'd be fine will an ileo but it would take a darn long time to accept and get used to. I had such a hard time with my temporary ileostomy.

It all boils down to what would fit into someone's lifestyle the best. No great choices we have with this stupid disease. But I still think the j pouch is pretty ingenious.

in a few months i will be able to tell you how much worse the loop really is The end is pretty easy...

I had severe rectal disease with very little colon involvement. Jpouch surgery 14 years ago saved my life. I just completed a grueling hike in Iceland that would not have been possible without my surgery. To say that it is not the best choice is naive. To say that it works well for every patient is not true either. If you are not living the life you want, revert back to the ostomy and move on. Quality of life is number 1. Too much thinking and analyzing isn't going to fix your situation, it reminds me of struggling with UC and wondering what I could have done to fix it.

Sue

rdm said...
For example: a person had horrible UC, uncontrollable with drugs opted to have a J Pouch and now has chronic pouchitis but it is controlled by rotating antibiotics for the rest of their lives and they are satisfied with that, believe me there are people in that boat. So I don’t question that the survey(s) are false, they are just too vague and poorly designed. A much more valuable survey would go into depth about the % of problems, controllable and uncontrollable, that people with J pouches have. Pouchitis, cuffitis, butt burn, nighttime leakage, daytime leakage, major accidents, blockages, strictures and so forth. That kind of survey would provide a future patient with intelligent information to make a decision. The same should be done for all surgical alternatives; end ileo, K pouch, BCIR, IRA.

That would be me with the chronic pouchitis but I'm still very happy with my j-pouch. Especially when I look at it from the perspective of living with UC for almost 10 years.

I don't know how relevant it is to know how many times I had butt burn or if I needed a stricture dilated a couple of times. Some of this stuff is controllable if you properly care for these issues.

Here's the thing with my j-pouch that I didn't expect, it takes more maintenance than I expected but it's not unmanageable like my UC was. I'm in monthly contact with my GI tweaking or changing medications, 2 scopes this year so far, etc... but I also have a new pouch. I was just at his office on Friday for blood work, digit check and a consultation.

I'd suggest the question for the survey be: besides seeing your GI for an annual screening how many times have you been to the GI's office in the past 12 or 24 months. My question to that answer would be a lot different than BBUC's answer but I am just as happy with my j-pouch.

Quite a lot of relevant info in this paper; the tables and figures are especially interesting:

Functional Outcomes After Ileal Pouch-Anal Anastomosis for Chronic Ulcerative Colitis

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1421082/

SL,
I probably shouldn't speak for someone else but I think Sue said what she said because her j pouch experience is relevant to the OP's title which says that a j pouch is a bad idea. It was surely a good idea for her and thousands of others as well.

NSSG,
You'll see when you have your j pouch hooked up that the number of times you go per day doesn't matter much. It's just too hard to explain until you have it. The majority of the time you are emptying when you pee anyway which is easier for a girl than a guy I suppose.

I'd be ****ing pissed off if going 12x a day was my long term result: I'm not even going that much now. (Well, not most days. Today I've been about 12x in two hours :-/ But I made a stupid choice for dinner. I was hoping I'd get away with it, but obviously I can't eat red peppers and peas yet.) I don't care if there's no urgency: 12x a day is highly inconvenient. I don't pee anything like 12x a day either.

nssg said...
It is easy to let yourself fall into thinking something is OK, just like I did with UC. There were times when I would convince myself that I was OK simply because I didn't think I could get anything better than that I had

So so true. I did the exact same thing with Crohn's nearly the whole time I had it. I just kept on finding reasons why my disease wasn't as bad as other people's. For the most part I was functional, I could eat a varied diet, I didn't have much bathroom anxiety, I was never hospitalised, and so on - obviously, there was a point when all this changed. But before then, it was actually quite easy to persuade myself that nothing would ever change. Occasionally I would receive a wake-up call, but when nothing continued to change, I reverted back to my previous helplessness. I eventually grew angry; really angry at the fact that no doctor would take my "bogstandard" Crohn's seriously. I think by that point I knew I was no longer okay, but I couldn't have articulated why, and no doctor was about to enlighten me. Except in 2010 one did, by telling me that if I didn't take any medication - I was arguing about going back on 6MP - I would die. The Crohn's would kill me. She actually said that. I was shaken up by it, but thought she was exaggerating! Perhaps she was, but whatevs: her words turned out to be scarily prescient, considering what followed a year later.

And that turned into a much longer story than I was planning: all I meant to say was "I agree".

I think people who are questioning the definition of a "successful" pouch are missing the point here. If someone is happy with their pouch, who are we to tell them they shouldn't be happy because their pouch doesn't meet some arbitrary standard? Shouldn't personal satisfaction be the ultimate goal? Evaluating things like quality of life and satisfaction instead of objective measures is helpful because it shows us how patients adapt to the pouch, both physically and emotionally. When we evaluate the statistics in this way, we see that most patients think their quality of life with the pouch is good.

Absolute number of bathroom trips is not something I count anymore. Especially in the summer months, most of my trips to the bathroom are motivated by a need to urinate, not to have a BM, so it's really not a useful or accurate measure of anything pouch related.

That said, there are plenty of studies that have looked at the objective measures you are clamoring for. The UCSF pouch guide cites their in-house data if you're looking for a good summary. I know the 95% satisfaction rate gets thrown around a lot here -- and I for one think it's the best stat to look at when you're considering a pouch -- but there is no paucity of other data about life with a j-pouch.

Sidenote, NSSG, I can't pass gas away from the toilet but it isn't a problem for me. I don't know if it's my diet (I doubt it, I eat a lot of veggies) or what but I almost never feel an urge to pass gas. It comes out when I have a BM.

Liz, the thing is, I think some people are so hell bent on avoiding an Ileostomy, they'll readily accept what isn't realistically a successful outcome. If they achieve happiness this way that's fine for the individual. The problem comes when they use boards such as this to advocate j-pouch surgery, based on their own acceptance. This could be very misleading to potential j-pouchers, who may not be so averse to an Ileostomy, but upon hearing so many "success" stories, plows on regardless.
I don't doubt that there are pouchers with great outcomes, but there are many like myself, kicking themselves they ever even heard of this procedure.
We should all keep questioning and debating here, the good stuff and the bad. It's the only way people wondering which way to go will get the big picture.

I accept the ileo, i just hate when it blows up like a balloon. I also find that it's more time consuming than a normal BM. Of course, a UC BM is another story entirely, lol. I don't think in my case it made sense to sit around waiting. I've been dealing with this crap for ten years. For better or worse, taking the next step was inevitable. Actually, living with this bag hasn't been that difficult. I just really need to get the wind out more easily. I am going to try osto ez vents. I hope i have luck. My insurance is picking this stuff up at 100% so I will try a plethora of items. Having a lot of options and a lot of pouches will make it a lot easier. If i can change my pouch every day, I will be much happier. I hate an old pouch!!!! I've been having fun trying stuff :)