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Having an incredibly hard time deciding b/w J-pouch and permanent ileo.

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Posted 11/17/2015 2:41 AM (GMT 0)
For those uninterested in reading the text below, the question I am posing is:

Do you regret your your J-pouch? Why or Why not.



For some background as to why I ask, you can read on...

So I had my total colectomy in March 2013 and felt so good with the ileostomy that I have kept it ever since.

Well now, almost three years later, I am starting to feel a little "chained" by this thing. I wear a stealth belt, which has been an incredibllleeee product to prevent accidents and generally keeping the bag out of the way. But sometimes I want to be able to run my hands over my stomach without anything getting in the way.

I have scoured the internet and talked to other individuals to have had the j-pouch and many have said they love the pouch but ... felt better with the ostomy? Shouldn't I want to feel good more than look good (which I know can "feel" good)?

Which makes me think: why would I get rid of this thing when I can eat whatever I want and lead a 99% normal life? The way I think about it is that my small intestine currently functions in essentially the same way it did before my colectomy, it's just been redirected. And with the j-pouch, you're asking your intestine to do something it wasn't designed to do. Seems not worth the risk of complications (pouchitis, blockages, leakage, retraining the muscles, etc.).

What it boils down to with me, I think, is that I want to WANT and LOVE my ostomy. Because I feel great so if it's not broken, why fix it? (the humor of the previous sentence is not lost on me...) Why risk at least two more surgeries, potential complications, retraining my body which almost guarantees some "accidents" along the way, when I am feeling good?

It seems so obvious to half of me but then the other half thinks "what if the J-pouch improves my life, though?" How can I know without trying?

Or maybe I need to accept that I my life is as "normal" as can be and the ostomy is the lesser of the two evils. Right now, I can eat whatever I want and do almost whatever I want (I swim, ride my bike, snowboard, hike, among other things) and that should be OK.
Posted 11/17/2015 2:56 AM (GMT 0)
J, I am not facing this question yet, I hope I never do. But everyone with IBD gives it thought.

There are so many things to consider, downtime and $$$$.

That said you mentioned a few things like pouchitis, etc. there are other things and the one thing that bugs me is the fact that I read that when you poop with a pouch it is always super loud farty noise. That would pretty much make my mind up.

I don't want to use the bathroom off the living room full of people and not to mention the smell.

Now that is just something I read so you might want to research the daily downsides.

I think I would stick with a bag but that is easy for me to say.

Also can you try it and if it doesn't work, no harm no foul???

Good luck!
Posted 11/17/2015 3:04 AM (GMT 0)
This post about using disabled toilets with a jpouch has gone viral where I am sobadass.me/2015/02/17/to-the-woman-who-tutted-at-me-using-the-disabled-toilets/. It's caused a lot of awareness and it's really great, but it's highlighted a few questions for me.

The author says ' I had a pouch made from my small intestine because my disease ridden colon was removed during surgery, the noise I make when I defecate is hilariously loud. Seriously, I get it. It’s comedic in it’s volume.' Okay... nobody ever mentioned anything about how the noise would be louder but it's cool, I can live with that. But then she says:

'Perhaps you could have stopped and heard me sobbing with pain because the acid in my stools has no way to be neutralised because I don’t have a large intestine and so opening my bowels actually burns my skin.'

opening my bowels actually burns my skin

Had no idea this was the reality, I thought the temporary ostomy bag would be the hardest part of getting a jpouch. I've heard a lot of jpouch positivity, how it's the best decision people ever made and that it's totally normal apart from more frequent and looser stools, but it seems I've not been listening to the whole story. Is 'sobbing with pain' from acid burn really so much better than UC pain?? Has made me think twice about being so open for surgery.

Yikes! That came from a post in ostonomy thread
Posted 11/17/2015 10:45 AM (GMT 0)
I had j pouch surgery 5 years ago. It's been a God send. Its just much easier to deal with than my ileo ever was. I eat whatever I want with my j pouch. There isn't any reason to think that will change for you if you're eating normal with your ileo.

It's a tough decision for most people. For me it was an easy one because I have two family members with long time j pouch and saw how well they have done over the years. Good luck with your decision.....if you have any specific questions, ask away.
Posted 11/17/2015 11:18 AM (GMT 0)
All I can say is I was in a very similar position to you. Had an ileostomy for 2 and a half years, it worked very well. But the main difference is that I wasn't eligible for a j-pouch ('cos Crohn's). However, I still had my original rectum and could, and did, have an ileorectal anastomosis: a joining of the ileum to the rectum.

It's my theory that those who have no other options open to them are the same ones who tend to be the most accepting of having a stoma. It's the knowing there's another option which is the devil, quite frankly. Nobody wants a bit of bowel sticking out of their stomach, let's face it. But if it's a choice between that and dying or having no quality of life, most people will take the bit of bowel sticking out of their stomach.

If you want my answer, I wish I'd had my rectum removed with the original surgery.

DMC2011 said...
]opening my bowels actually burns my skin

Had no idea this was the reality

Yes it is. I manage to keep it from getting out of control by using extra sensitive wet wipes for newborn babies and applying calmoseptine regularly. As it is, it's still horribly uncomfortable sometimes but I'm not crying with pain after passing 2 drops of stool, which I would be if I didn't do anything.

Taking a bile-binding med like Questran may help with acid burn. If I remember (I won't - brain fog is worse than ever these days), I will ask my surgeon to prescribe me some at my appointment next week.
Posted 11/17/2015 1:06 PM (GMT 0)
In all of the five years with my j pouch I never have gotten or get the bad butt burn some people speak of. I do get some irritation usually because of a certain food but it certainly doesn't bring tears to my eyes. I do use a zinc oxide cream such as calmoseptine as needed. Everyone is different in their experiences that's for sure.
Posted 11/17/2015 1:08 PM (GMT 0)
Interesting. This is common and isn't talked about much? Wonder why that is??
Posted 11/17/2015 1:34 PM (GMT 0)
I guess if you're happy with your ileo, there isn't much of a reason to move on to a j-pouch. If you're feeling like you want to be free of an external pouch, j-pouch is the way to achieve that. It isn't really vanity to want to feel your abdomen and not feel a bag, it is normal... I don't think you should feel like you're being vain to not want to buy ostomy supplies or be dependent on them for the rest of your life. That is perfectly normal. Two more steps to get to a pouch sounds like a lot but it goes quickly.

This UC board probably isn't the best place to go for perspective on this issue. Most of the members here have no experience with surgery and would do just about anything to avoid it. I say that because that was my exact thought a year ago. I also think if I were a UCer who had no experience with surgery, I would definitely push you toward a jpouch. In my case. I had a really great stoma after step 1. I got a great wear-time and I wasn't having a ton of output so things were much easier than I expected. It was a huge improvement over my life with UC. After step 2, the loop stoma has been very difficult to manage. Definitely a huge contrast from what I was dealing with after step 1. It makes you want to rush to get reconnected.

Now that I am close to my takedown, I think about all the what ifs and I wonder if it is the right thing to do, but with this loop, i couldn't function long-term, so moving forward is my best option. I am excited to lose the bag. I am nervous about what to expect. That is one of the biggest problems with this surgery, you really don't know what to expect - you need to do it to find out. It is scary. People say "you can always go back to the ileo", but it's not that simple. It sounds like pouch removal is actually a difficult surgery with potential complications. You also have a shorter bowel if you have to remove the pouch. All things to consider...

The bottom line is that most people with jpouches wouldn't trade it for an ileo. I've even seen people with poorly functioning pouches that prefer it over an ileo. It is just a preference and I personally think the ileo is probably the smarter solution, but you should do what you think is best for you. Many people have symptoms when they have a rectum and no colon, usually that pushes you to make a decision, either perm ileo or jpouch. My symptoms were minimal so I could have stuck with the ileo longer but i wanted to get it all over with. I also have insurance considerations that make it easier to complete the surgeries within the calendar year.
Posted 11/17/2015 1:35 PM (GMT 0)

coffeeman said...
Interesting. This is common and isn't talked about much? Wonder why that is??


Probably because this is a UC board and people who have had surgery are very rare. We have 3 or 4 people pop in once in a while but mainly it's a discussion about how to avoid surgery. It's not a great place to come for surgery advice.
Posted 11/17/2015 5:27 PM (GMT 0)
The J-pouch creation is a bigger surgery than the Colectomy plus you'll need a 2nd surgery to connect everything.

I have a problematic j-pouch (chronic pouchitis) but it's not nearly as bad as UC. I find it very manageable.

I prefer my J-pouch over the end ileo that I had but I could be happy with the end ileo, my j-pouch is more convenient for me.

If you still have your rectum then at some point you'll probably want it removed and sewed up if you're not going to get a j-pouch and that is a big surgery too.

My concern is that you haven't used your sphincter too much in the last couple of years, you should talk to the surgeon about that. Your sphincter is a muscle and if you don't use it then it loses its strength and if it's too weak than you might have a leakage issue. Some people do kegel exercises to strengthen the sphincter.

Check out the ostomy board on HW and J-pouch.org, you'll get more in depth answers to your questions from people who have had the surgeries.
Posted 11/17/2015 8:23 PM (GMT 0)
There's pros and cons to both. I'm certainly no expert, but some of the things I've heard are:

With an end-ileo you have ostomy supplies to buy, occasional leaks and/or skin irritation. There can be issues with the stoma or risk of blockages. Things you're likely aware of and currently deal with.

95 percent of j-pouch patients are happy with their outcome (the remainder may have troubles like reoccurring pouchitis, higher output than expected, incontinence, etc). A j-pouch means two extra surgeries, a recovery period for each, and then an adaptation period while your pouch learns to behave like a large intestine; temporary inconveniences. You can have infections, abscesses, or other issues, not everyone gets them by any means, but prolongs the recovery period if you're unfortunate to have them. Once everything is settled, you have 4-6 non urgent bms spaced throughout the day (and sometimes wakes you up at night); very different than having uc, hold it for 30 minutes or more. You can get pouchitis that can be one time incident or a reoccurring one. Pouchitis is far less of a trouble than uc symptoms are, from what I've heard.
Posted 11/17/2015 8:36 PM (GMT 0)
Who would your surgeon be and how experienced are they with creating J-pouches? You need a very experience surgeon for this, it gives you much better odds at having a good outcome with your pouch.
Posted 11/17/2015 8:59 PM (GMT 0)
There is some very good advice in the previous posts.
I was very worried about the 3 step surgery my daughter had-her rectum was a mess and they have to keep a little cuff that can act up post surgery. So far, it has not. Butt burn isn't even a thing.
She is so relieved to have her health back and the pouch is seemingly getting better and better. She doesn't get up in the night to empty,she can eat most anything( still careful of carbonation/corn/too much salad etc). The biggest difference is having control, and that means you having a sphincter that works. Urgency is a hallmark of an inflamed rectum and the control over it has allowed her to do things she never considered before. She is also single and 22, and wanted her body to still look "attractive"-so as long as she was a good candidate, it made sense. All the incisions were done laperscopically and they are tiny slivers-only the stoma site looks like a scar. No pouchitis yet, no other meds(except a PPI from 6 years of nausea). It worked for her-not sure how you decide. We each only have our one experience. Agree that the end illeo was way more manageable than the darn loop. Good luck with whatever you decide.
Posted 11/17/2015 9:49 PM (GMT 0)
95 percent of j-pouch patients are happy with their outcome

It's more like, '95% of j-pouch patients don't go back to having an ileostomy'. That is pretty much how j-pouch success is measured. Some people settle for a poor outcome rather than go back to having a stoma for life. I won't be one of them.

Edit: If anyone is interested, I literally read this just now.



A blogger with a j-pouch said...
I can’t find any official success stats but I can say that my surgeon told me this.

40% will be perfect/excellent

40% will be acceptable with some issues

10% will be poor but the patient will put up with the problems as they are stoma averse

10% will need to be defunctioned

Somebody replied with this post:

Somebody said...
Actually it wouldn’t help you, record keeping on j-pouches has historically been quite poor. That is what prompted the creation of this: http://pouch.iasupport.org/ileal-pouch-registry. The figures Sam (‘s surgeon) quoted come from various meta studies conducted over the years. Surgeons typically talk about the 4-4-2 rule, 4/10 good, 4/10 fair to middling, 2/10 poor. Sam’s surgeon just went into more details on the 2/10. It is also fair to say that this surgery is still relatively new, the first ones being done between 1976 and 1978 and much of this data is based on pouches that were done when the surgery was quite new and surgeons were inexperienced. It would be interesting to see how those figures stack up 20 years time when the people who are having their surgeries now are included.

Source: http://www.sobadass.me/2015/09/27/what-is-a-jpouch/

Post Edited (NiceCupOfTea) : 11/17/2015 4:15:05 PM (GMT-7)

Posted 11/17/2015 11:24 PM (GMT 0)
Interesting NCOT. I've only seen the 95 percent figure prior to this, cited on quite a few sites.

I think it's a well established fact that you're not happy with your surgery (well at least the end-ileo).
Posted 11/18/2015 12:41 AM (GMT 0)
NCOT,
You're hell bent on thinking that 95% stat is not accurate. Lol

Why do you find it so hard to believe that a high % of people are happy and living normal lives? Really, the vast majority do just fine. If that wasn't true then the procedure wouldn't be performed as often as it is.
Posted 11/18/2015 11:33 AM (GMT 0)

iPoop said...
Interesting NCOT. I've only seen the 95 percent figure prior to this, cited on quite a few sites.

I think it's a well established fact that you're not happy with your surgery (well at least the end-ileo).

If it's sites like these (where people just go round quoting the 95% figure without providing a shred of evidence), then I wouldn't pay much attention to it in all honesty. 95% is actually remarkably high when you think about it: unrealistically high. People can't be that unanimous about a new phone, let alone a complex 3-stage surgery.

I'm not happy with my surgery, no, but I think anyone who was in my shoes and claimed that they were happy would be deluding themselves. What I'm noticing, though, as the weeks go by is that this is slowly becoming my new 'normal' and that scares me a little bit. I don't want to get used to this, because it's a crappy way to live. It's so ridiculously easy to rationalise things ("well I'm not doubled over in pain, I don't have a 38.5C fever, and I only went 12x today, so I must be all right!") and then persuade yourself that the outcome is acceptable or even good. The classic thing that I see quite a bit on these boards is "but it's still so much better than UC!" ("it" being chronic pouchitis, or whatever).

I'm not saying everyone is pretending to have a good outcome when they don't. If those stats I quoted are true, then about 40% can expect to have an optimal outcome and another 40% an 'acceptable' (however you define acceptable) outcome.

ByeByeUC said...
Why do you find it so hard to believe that a high % of people are happy and living normal lives? Really, the vast majority do just fine. If that wasn't true then the procedure wouldn't be performed as often as it is.

Well, my reply to iPoop covers most of it, I think. Obviously the outcome has to be acceptable most of the time, otherwise surgeons wouldn't do it - most people with a j-pouch clearly don't choose to go back to an ileostomy. You're interpreting that as "95% of people with j-pouches couldn't be happier!". I believe that you couldn't be happier, but not 95% of people who have j-pouch surgery. It doesn't ring true for so many reasons.
Posted 11/18/2015 12:35 PM (GMT 0)
It's an interesting question that's worth exploring. I did some digging and pulled up this:

Long-Term Functional Outcome and Quality of Life After Stapled Restorative Proctocolectomy
www.ncbi.nlm.nih.gov/pmc/articles/PMC1420906/?report=classic


Results

Postoperative quality of life as measured by SF-36 was excellent and compared well with published norms for the general U.S. population. The CGQL was found to be reliable, responsive, and valid, and there was a high correlation with the SF-36 scores. Using the CGQL, quality of life was shown to increase after the first 2 years after surgery, and there was no deterioration thereafter. The prevalence of perfect continence increased from 75.5% before surgery to 82.4% after surgery, and although this deteriorated somewhat >2 years after surgery, it was no worse than preoperative values. Ninety-eight percent of patients would recommend the surgery to others.

Satisfaction With Surgery

Measures of patient satisfaction with surgery are shown in Table 6. The great majority of patients would recommend their pouch to others and would themselves undergo the pouch surgery if the situation presented itself again. On a scale of 0 to 10, mean happiness-with-surgery scores for each of the four postoperative intervals studied ranged from 8.9 to 9.3. There was no reduction in patient satisfaction with time.
Posted 11/18/2015 12:54 PM (GMT 0)
Here's another.
Long-term outcomes of colectomy surgery among patients with ulcerative colitis

www.ncbi.nlm.nih.gov/pmc/articles/PMC4628015/

Quality of life and satisfaction with colectomy

The majority of respondents (305, 87 %) reported that they were “somewhat satisfied”, “satisfied”, or “very satisfied” with colectomy. Most (294, 84 %) also reported an improvement in their quality of life post-surgery, with 46 % stating that their current quality of life was “very improved.”
Posted 11/18/2015 12:54 PM (GMT 0)
I believe the 95% stat came solely from the Cleaveland Clinic in their studies at that hospital. And I do believe that but you're right....it probably isn't quite that high across the board. I've researched this. You'll find several different sets of stats from different studies. So many different things factor into it. I belong to a j pouch Facebook group. about 3000 members I think. People are always there asking "who is happy with their j pouch?" The overwhelming majority are very happy. I use that group as a guide when people ask these kinds of questions since they are real people and not a statistic.

Doesn't really matter what the exact percent is. Facts are the success and satisfaction rate is rather high. That was good enough for me. I believe that the benefits far outweigh the risk.
Posted 11/18/2015 1:44 PM (GMT 0)
The ~95% satisfaction rates come from the Cleveland Clinic, Mayo Clinic, etc. as well as articles published by the NIH after they conducted studies from several thousand jpouch patients.

Post Edited (atwoodt) : 11/18/2015 6:47:42 AM (GMT-7)

Posted 11/18/2015 2:18 PM (GMT 0)
I very much appreciate your posts on this topic NCOT. Even if your particular experience has been sub-par, your posts are much more realistic concerning this topic.
Posted 11/18/2015 3:18 PM (GMT 0)

coffeeman said...
I very much appreciate your posts on this topic NCOT. Even if your particular experience has been sub-par, your posts are much more realistic concerning this topic.

Thanks coffeeman.

I don't pay much attention to studies, as they seem to set the bar for success really low. I did look up studies for my procedure, incidentally - ileorectal anastamosis - and while they weren't quite as glowing as the j-pouch ones, the majority still reported being satisfied and having their ira at the 10-year mark. I scoured the internet for real-life stories, but there were virtually none. People with UC have the j-pouch and people with Crohn's colitis tend to have perianal or fistulizing disease which rules an ira out - I think nowadays it's mainly used for people with FAP. So basically old studies were all I really had to go on when making a decision.

(Getting a bit off-topic here, but I remember a more recent study comparing the outcomes of ira vs. j-pouch in FAP patients and the ira coming off better. However FAP patients don't have Crohn's to worry about.)

@iPoop - I'm too tired to read either study in full right now, but there were a lot of qualifiers which you didn't add. I think I can sum up the entire debate by saying this: people see whatever they most want to see. If they want to believe the j-pouch is a raging success, that is the take-home message they will take from any studies they read. Me, I'm the same but at least I'm vaguely aware of my bias.

And my bias is this: I'm against surgery. Don't get me wrong, I'm not anti-surgery: some people absolutely ought to have it done. I just am baffled by the hard sell it gets on these boards. I could never do that. If I think you've reached the end of the line with medical treatment and should think about having surgery, I'll say so, but I'll never wax lyrical about it. Personally I think colectomies will be seen as barbaric in a couple of hundred years time. It all certainly feels rather barbaric: the ileostomy, the forcing your small bowel into the role of a rectum, the wholesale destruction of your gut flora, etc.
Posted 11/18/2015 4:11 PM (GMT 0)
No worries NCOT, it's great to have your point of view expressed, as a reminder that surgery isn't all rainbows, puppy dogs, and daisys. Surgery isn't a first line treatment because of that, as keeping an intestine is preferable for those who can manage uc via meds; not everyone can though. My thought is hope is often something folks need after failing all the uc medications after a prolonged fight with uc, that surgery will make things better and for the majority it does. But nothing applies to 100%, I truly wish that it did though, for yourself included.
Posted 11/18/2015 4:11 PM (GMT 0)
14 years with a jpouch and I am very happy. I researched all the options; jpouch, BCIR, and permanent ostomy. I talked with people that had each option, I weighed my lifestyle, and made a list of pros and cons and ended up finding the jpouch to be perfect for me. This really is your decision and instead of taking anecdotal comments from people you should be doing research and deciding what's best for you. You have to live with your choice, make sure the choice is what you want.

Sue
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