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Permanent Ileostomy or J-pouch???

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Posted 2/8/2014 11:53 PM (GMT 0)
Hi all,
New to this site, but I have often used it in the past to help me with Ulcerative Colitis issues.

Basically, I'm a 21 year old male, had particularly bad ulcerative colitis and was forced into emergency colectomy with ileostomy surgery last March. I still get real problems with the rectal stump and find myself having to rush to the toilet a few times a day with the smallest amount of blood and mucous - so it's not ideal.

I need some advice. I can't continue living with the rectal stump but I don't know whether to keep my ileostomy or go for the J-pouch. I have never had any problems living with the ileostomy in the past year, so I always imagined I'd just keep it. But my life's just been turned upside down - my girlfriend of 3 years split up with me and I'm concerned the bag will stop me meeting new people. On the other hand, since my condition was so bad, I'm terrified that the J-pouch could lead to pouchitis or I might get sexual nerve problems, which would really hurt me psychologically as I'm so young!

Any experience of either operation would be really helpful - especially people that had severe UC and opted for the J-pouch.
Posted 2/9/2014 4:53 AM (GMT 0)
I'm 27 and just had my ileostomy surgery. I'm still adjusting and what not but also have had zero activity from my rectal stump. They said it was to inflamed to make the jpouch at the time of surgery. So I think for now you're probably stuck with the ileo which makes the decision kind of easy at this point, at least until that rectum calms down.

Either way bud, focus on your health. I realize the sexual thing is nerve racking and CAN happen but it's also a small chance. Try to keep your life into perspective and yes at your age sex is a big part but there's a lot more to life as well and none of which (including sex) will matter if you're not healthy.

But back to your question, me personally I'm going to go for the jpouch. My reasoning is the same reason I used when I had UC. I waited to get the surgery to try all the meds so at least if the surgery went badly I could say I had no reservations because none of the meds worked. I'll do the jpouch because it's the closest thing to "normal" I'll get AND you can always go back to a perm ileo if the pouch fails. So again, no reservations. The potential for sexual issues I chalked up to potential side affects, like cancer or the craziness from excessive prednisone. It happens to some but not all and it's still the course of treatment.

Whatever you decide, at least you're done suffering. Best of luck to you!
Posted 2/10/2014 4:14 AM (GMT 0)
There are lots of pros and cons for each set of colonless plumbing, but both can offer outstanding quality of life. Speaking for myself, I find my quality of life in all respects-- sports, work, sex, etc-- as good as pre-UC with my end ileo. I still have arectal stump but it causes me no issues at all so For now I have no plans for it. One should never have a jpouch with the logoc that it's trivial to reverse it ti an end ileo though- removing a jpouch is an extremely complex surgery and the end result is the loss of a tremendous amount of small intestine vs an end ileo from the get go. Plenty of good reasons to pursue a jpouch, but "why not do it because if it fails I can get an ileo" is not one of them, from what I have read. (It was one kf the factors that led me to feel extremely happy with my decision to reject the risks of a jpouch for my own risk calculus.)
Posted 2/10/2014 4:26 AM (GMT 0)
I have a permanent ileo. I still have a rectum with no problem. I understand with a j-pouch you need to use a toilet 5 or 6 times a day. I don't empty my pouch that many times and it is at MY convenience. No thought to a j-pouch. I am 69 yo. I can see the issue with an external pouch for a 21 yo.

Dan
Posted 2/10/2014 5:42 AM (GMT 0)
@probiotic - just curious where you've read that? The part involving the removal of the jpouch to go back to an end ileo. From the stuff I've read the removal of the pouch isnt nearly as extensive as the creation of said pouch and the amount of small intestine you'd lose doesn't seem to be that much when on average you're dealing with 22ft. The creation of the pouch doesn't use that much and is intended to stretch over time for absorption reasons. Grant it my thought process for going the jpouch route wasn't only because a perm ileo is a fall back but at the same time that safety net is there and perm ileo life isn't bad at all and at time quits convenient as you know. Obviously, I'm not questioning your thought process or anything I'm just curious as to where you got that information as is like to check it out before my own pouch construction and reversal later this year. Thanks!
Posted 2/10/2014 1:09 PM (GMT 0)
Rabbit- i dont have a link, but a few posters who had to go from jpouch back to ileo mentioned that to me and my surgical consultants also warned me not to think that it is a casual thing to try. On jpouch.org one thing that I notice is that many people whose jpouches are nughtmarish are afraid to have their pouches removed. I was told by my surgeon that it is a very complex operation and thatbalthough the loss of additional terminal ilium is significant even thiugh the total number of feet of intestine may not make it seem that critical. I tend to believe it is signficant, because when you compare the night and day difference in oerformance amd output quality of a loop ileo with a non connected jpouch, to an end ileo, it is like night and day, so it seems to me that those few feet can make a big difference. Either way, I think if you want a jpouch, younshould go for it. It all comes down to ones lifestyle. For me, the ability to have many, many hours of excess reservoir holding time vs a point where Inwoukd "have" to go with a jpouch gives me tremendous piece of mind, especially as I have internal hemmies and I recall urgency always being a oroblem for me if my stool was not formed. But I gather that most with a jpouch never feel any urgency-- still, the possibility of urgency was/is not acceptable to my lifestyle, so I am extremely happy with my choice.

PS rabbit- saw your sig eleswhere- thanks for your service.

Post Edited (Probiotic) : 2/10/2014 6:14:44 AM (GMT-7)

Posted 2/10/2014 1:22 PM (GMT 0)
Put it all down on paper....the pros and cons of each because both have pros and cons. Really think about your life style and which one would best suit you.

I went forward with the j pouch. I had a really tough time with my ileo so it was a no brainer for me. It's been a total success and I'm grateful ever day for it. Good luck with deciding.

Rabbit- I have heard too that having the j pouch removed is an extremely difficult surgery. There's a member here...sorry I forget who but I think she had it done and it was no picnic.
Posted 2/10/2014 2:04 PM (GMT 0)
I agree that you need to make a list of pros and cons FOR YOU and to really think carefully about what would give you the best quality of life. It is astounding how much life can change for the better once that diseased colon is out of your body, it will be tough at first and there are times in the recovery period where you may question your decision, but don't lose hope, healing takes time.

I was diagnosed with UC when I was 10 (in 1990), had proctocolectomy in 1995 and had my loop ileo taken down in 1996. I lived with the jpouch for almost 19 years and had it removed in Oct 2013, just about four months ago.

Speaking from experience of having a two step jpouch and then the jpouch removal and butt sewn up, I can tell you that the removal was the hardest surgery and recovery I've ever done. Over time adhesions form which can complicate any surgery, and I had two large incisions that needed to heal - my abdominal incision which needed to be opened on day of discharge and four months later is still open and slowly healing, and my butt incision which is about 10/12 cm long. Thankfully that healed really well.

I recently had a friend say that he is going for the jpouch and even if he has to get it removed after 5 or 10 years it will be worth it. Personally going through this recovery, it wouldn't be worth it to have the jpouch for 5 or 10 years to then have it removed. Like I said, this surgery has kicked my butt.

There are many many many risks of surgery, from anesthetic to major infection, urinary incontinence, and for women like me, huge infertility rates b/c of the scarring of fallopian tubes with pelvic dissection.

Weigh your options carefully but know that many people are very satisfied with the jpouch, and the hope is always that they will last you for your whole life.

Best of luck!
Posted 2/10/2014 3:17 PM (GMT 0)
Wow! I had no idea. Thanks for all the info everyone, I'm going to have to seriously think about whether or not I want the jpouch. I do have a perm ileo and life is not bad at all. Thanks again. Also probiotic, thank you for your thanks haha.
Posted 2/10/2014 8:00 PM (GMT 0)
Thanks for all of your advice everyone. I've been weighing up the options and talking it through with my family and I've got an appointment with my surgeon tomorrow, for an operation sometime in the summer.

I think I'm going to keep the ileo because I'm happy with it and I'm still an extremely confident person with it - I wouldn't be embarrassed showing it off and if someone else has a problem with it, then they obviously aren't the right person for me.

I just think because my rectum stump has been constantly inflamed since my operation last year, there's a strong possibility of getting pouchitis - which doesn't sound fun at all! Once I get the stump removed it'll all be over! :)
Posted 2/11/2014 1:57 AM (GMT 0)
I have a permanent ileo and I am more than happy with it! Actually, I never even considered a J Pouch, even though it was an option. Due to being too ill for all the surgery at once, my surgeon did remove my rectum, but left a small anal stump and did not sew me shut. I do have some mucus discharge daily, and sometimes some pain, urgency and a little blood with it. I was hoping to not ever have to go through the rest of the surgery, but I guess I might have to.

As for going from a J Pouch back to and Ileo....I have also heard that it is a VERY rough operation. Not easy to perform or recover from. Certainly something to consider.
Posted 2/11/2014 4:09 AM (GMT 0)
I'm not trying to persuade you either way, but in the meantime you might be able to treat that stump with some steroid suppositories or rowasa (rectal only obviously).
Posted 2/11/2014 8:47 AM (GMT 0)
Yes, I've been using a range of mesalazine suppositories and enemas and the pattern has been that they work for a while, but then I get a flare up every couple of weeks and it's usually so bad that I can't tolerate keeping the enemas in. I'm also rushing to the toilet a lot, so although there's not much blood each time, when it's equated I get the feeling I'm probably losing far more than I should each day.
Posted 2/11/2014 12:15 PM (GMT 0)
Mike that's terrible. I couldn't imagine that AFTER you've had your colon removed. They said the inflammation in my recital stump was to bad to construct a pouch during the colon removal and I've literally gone to the bathroom once and it was like 2 days after surgery, had no urgency/pain/blood. I've felt a little pressure once or twice since but that's it. I had my surgery 2 weeks ago.

Maybe the perm ileo would be your best bet. After finding out how severe a jpouch removal would be you should seriously talk to your doc and consider removing that stump. Life with an ileo isn't bad at all. Especially with things like the StealthBelt or the wraps from ostomy secrets.

Good luck with whatever you choose and I really hope that inflammation gets under control.

Edit: I just re-read your original post and I know your concern about meeting people and at your age it's valid. But guess what bud? Most people really don't give a crap and everyone has their own insecurities, whether it's webbed toes or a cleft lip or in our case a butthole next to our bellybutton. Either way, it's yours, it saved your life so own that crap! Plus finding a partner is about experiences, good and bad and making it through them. I really wouldn't worry about meeting someone and that hindering you, most people are more curious about it than they are disgusted. Plus only 75k a year get any sort of ostomy surgery, that doesn't make us one of a kind but it does make us rare which is kind of cool in my book. But yea, check out stealthbelt.com and ostomysecrets.com they've got some products that will make you more secure in public or intimate situations. I've ordered my stuff and when it comes in ill post my "review" in the forums

Post Edited (Rabbit81586) : 2/11/2014 5:21:57 AM (GMT-7)

Posted 2/11/2014 4:55 PM (GMT 0)
Hi Mike

I can totally understand your worries about meeting a partner. But, let me tell you (and I'm not just saying this because I have a perm ileo) any girl worth paying attention to you won't care about your ostomy, should you have it permanently.

When I had my jpouch there were times when things were great. Over the years, my jpouch started failing. Honestly, running to the bathroom, soiling my underwear, have incredible anal pain and spasms, cancelling plans, etc would have ruined a relationship. I went on a cruise and was constantly searching for bathrooms. I could barely get through island tours without clenching my butt to keep the poo in. It was bad.

This ostomy has given me so much peace and confidence. I'm currently single, but now that I can actually get out and live a life I've always wanted to I'd make for a better partner than when I had my jpouch. Yes, dating will be scary but so well worth it in the end.

I don't want to say that the jpouch is bad, because many many people have great success with it and live long healthy and happy lives. It just didn't work for me.

When making your pros and cons don't think about the dating part of things. You will find someone who loves you for you. For better or worse. Sickness and health, right? That special girl is out there who knows what she is getting in to right from the beginning and will just be so happy that you are healthy, that a perm ileo won't be an issue.
Posted 2/11/2014 8:39 PM (GMT 0)

Rabbit81586 said...
I'll do the jpouch because it's the closest thing to "normal" I'll get AND you can always go back to a perm ileo if the pouch fails. So again, no reservations. The potential for sexual issues I chalked up to potential side affects, like cancer or the craziness from excessive prednisone. It happens to some but not all and it's still the course of treatment.!

I had exactly the same reasoning. Others have mentioned this but I make a "duty " to respond whenever I hear this line of thinking. You are absolutely right you can almost certainly go from a J pouch to an end Ileo but it involves from where you are right now several other surgeries, hospital stays and potential complications. The J pouch excision surgery is often very tricky. It needs to be done by a surgeon that has had lots of experience in J pouch revisions and excisions. There is a fair chance of sexual dysfunction because unlike an original surgery where the colon/rectum are removed the nerves are often covered up with scar tissue from the surgeries you have already had. There is a minor chance of urinary incontinence. In other words it aint a walk in the park. I had mine removed successfully. What rarely works is just disconnecting the J pouch and leaving it in place. I tried this, as have many others and usually one gets very large amounts of secretions from the disconnected J pouch. This is similar to what is called diversion colitis; only it takes place in the J pouch rather than a remnant of the colon/rectum.

This is not to say that you guys shouldnt go for the J pouch but if you do go with your eyes open.
Posted 2/11/2014 8:59 PM (GMT 0)
I never realised a j-pouch reversal was that tricky: dang. I also thought about just leaving the disconnected j-pouch in place, but that apparently doesn't work either.

I would just add that removing a few feet of small bowel should not be taken lightly either. I'm not quite sure how many feet you'd be talking about here, but some people with Crohn's end up with severe diarrhoea after a bowel resection (often temporary, but not always). I'm honestly surprised that j-pouches work as well as they do; I guess it's a testament to the bowels' ability to adjust to a pretty unnatural function.
Posted 2/12/2014 1:33 AM (GMT 0)
Hi, I am someone who had an a total colectomy with a loop ileostomy and j-pouch construction all in one surgery. Four months later I had my take down surgery. I can tell you I had become so used to having the ileostomy, I was considering my options of not having the take-down. My reasoning for this was as someone else stated, the ileostomy was more convenient. I did decide to have the take-down and I now have an j-pouch that performs fairly well. I have some very good days and I have some tough ones. I am an older person so there was some concern about continence. I do pretty well in that department. I have times when there is urgency, but I have control, not like the UC days when the bowel would win out over my will. Along the urgency lines, I have had times when my ostomy bag would fill to the point of bursting at some very inconvenient times, so I found my current urgency situation is no better or worst than when I had the ileostomy.
One final note. No surgery is easy and should be considered serious. I thought my take down would be a piece of cake compared to the first surgery. I would say that the take down for me was probably worse that the initial colectomy due to a small bowel obstruction. I was in the hospital for 11 days and was a very sad lady. During those 11 days I wish for my ileostomy back.

Bottom line: The days that are good are great and the days that are tough are way better that the best days with UC.
Good luck.
Posted 2/12/2014 2:29 AM (GMT 0)
The loop ileo that is the temporary ileo in a 2 step jpouch is generally a very unsatisfactory and slipshod affair, from my reading of everyones' accounts- by contrast an end ileo as is created for permanent ostomates (and step 1 of a 3 step) is like day to night vs a loop ileo, in most cases completely free of all the problems and issues experienced by 2-step jpouchers who had temporary ileos. To feel my pouch filling to near the bursting point, I'd need to pig out all day and then refuse to emoty it for 12 hours or more I think. Of course, long before then I would have gone at least once to pee and/or to just empty it out for comfort.

There are pros and cons for each surgery type, that's for sure. As an end ileo ostomate, though, I have found that basically all of the cons that I was worried about turned out to be either grossly overblown, or not an issue at all. One example: shortly before my surgery I was obsessed with fears that my ileo would make a lot of embarassing noise. In reality, I dont think my ileo has ever, in the 6 or 7 months after my first two months post surgery, made noise that is actually audible even in a quiet public place-- maybe a few times it was as loud as a very quiet tummy rumble at most and if at alll, and lasting all of a second or two. Another example was the fear that I would be tied down to carrying tons of appliances with me when traveling. It turns out that, even carrying 3 or 4x the number of wafers, pouches and barrier rings that I expect I'll need (I change every 5 days on average although I could probably last 6 or 7), that amounts to nothing mire than some stuff fit into a single ziploc bag weighing a few ounches for a two week trip.

I am sure the same is true of the jpouch- fears get way overblown. The important thing is to consider which system suits omes lifestyle, including assessing worst case downside risks and which risks would be the most and least unacceptible. I have yet to even tell most if my coworkers or friends about my new plumbing- only a few very close to me- and those who don't know literally dont have any inkling i.e. there is no way for them to even know.

Post Edited (Probiotic) : 2/11/2014 7:37:25 PM (GMT-7)

Posted 2/12/2014 3:09 AM (GMT 0)
mike, I think I can weigh in because I had a very similar experience to you. I kept the rectum after the first step/first ileo, and it became VERY inflamed. I had urgency to pass blood and mucus on a daily basis and even had "incontinence", as well as low grade fevers pretty much consistently until my rectum was removed.

I'm happy with my decision to do the j-pouch but I was also happy with my end ileostomy. I definitely wouldn't advise you one way or the other -- you have to do what is right for you and after thinking and reading and talking a LOT (I talked the ears off of my family, most of my friends, and even a therapist I hired just to talk about the decision) I just... wanted to do a j-pouch.

I would caution you that having rectal inflammation is NOT an indication of future risk for pouchitis. Virtually everyone who gets a j-pouch has UC, everyone who has UC has rectal inflammation, and most UC patients who get j-pouches have bad inflammation. rdm mentioned diversion colitis upthread -- this is most likely what you're suffering from. Inflammation can get much worse from having the fecal stream diverted away because the tissue isn't getting nutrients anymore. Your pouchitis risk is really no different from any other UC patient who opts for a j-pouch. The main thing that can predict pouchitis risk is if you have indeterminate colitis/possible Crohn's.

I guess the last thing I would say is that the second step surgery, the pouch construction, was by far the hardest surgery for me. It was very, very painful and I had a hard time getting around for at least a few weeks afterward, not to mention the difficulty of staying hydrated and managing the loop ileostomy. It's not an easy path so only do it if you REALLY want the j-pouch.
Posted 2/13/2014 9:31 AM (GMT 0)

Pluot said...
I would caution you that having rectal inflammation is NOT an indication of future risk for pouchitis. Virtually everyone who gets a j-pouch has UC, everyone who has UC has rectal inflammation, and most UC patients who get j-pouches have bad inflammation. rdm mentioned diversion colitis upthread -- this is most likely what you're suffering from. Inflammation can get much worse from having the fecal stream diverted away because the tissue isn't getting nutrients anymore. Your pouchitis risk is really no different from any other UC patient who opts for a j-pouch. The main thing that can predict pouchitis risk is if you have indeterminate colitis/possible Crohn's

This is great stuff. It's obviously a misconception of mine because I thought rectal inflammation would be an indication of pouchitis and I'm glad to know it isn't. Pluot's blog helped me feel comfortable with my surgical decision when I was suffering. Check it out, there's a lot of good info in there (the link is in her signature).
Posted 2/14/2014 4:44 PM (GMT 0)
@mikeh24: You asked for information from those who have gone the j-pouch route. Pluto's comments are right on track. I had my j-pouch construction at the time of the colectomy. That was difficult but I got through it. You have youth on your side. So good luck to you no matter your decision. It is yours to make. At least this site allows you to make the decision and informed one.
@probiotic, I found that I didn't need to eat that much to trigger the peristalsis that would fill my bag with output not to mention the air. The point to my comment is that even though I had limitations with the loop ileostomy I did find having an ileostomy was not a bad way to live. And that either way your body must learn to live with new plumbing, so there are challenges.
Posted 2/14/2014 5:54 PM (GMT 0)

Rabbit81586 said...

Pluot said...
I would caution you that having rectal inflammation is NOT an indication of future risk for pouchitis. Virtually everyone who gets a j-pouch has UC, everyone who has UC has rectal inflammation, and most UC patients who get j-pouches have bad inflammation. rdm mentioned diversion colitis upthread -- this is most likely what you're suffering from. Inflammation can get much worse from having the fecal stream diverted away because the tissue isn't getting nutrients anymore. Your pouchitis risk is really no different from any other UC patient who opts for a j-pouch. The main thing that can predict pouchitis risk is if you have indeterminate colitis/possible Crohn's

This is great stuff. It's obviously a misconception of mine because I thought rectal inflammation would be an indication of pouchitis and I'm glad to know it isn't. Pluot's blog helped me feel comfortable with my surgical decision when I was suffering. Check it out, there's a lot of good info in there (the link is in her signature).

Rabbit,
Oh man, nobody's rectum was more of a disaster as mine was with UC. It was majorly effected. I'm knocking wood here....3.5 years with my j pouch and not one bout of pouchitis. I hope I didn't just jinx myself! Side note: My sister has had her j pouch for 22 years and never had pouchitis. That she knows of anyway! The disease was bad in her rectum too prior to surgery. So it really has nothing to do if you will get pouchitis or not.
Posted 2/14/2014 6:07 PM (GMT 0)
The pouch is made from the end of the small bowel, a completely different area to the rectum. The small bowel is never affected by UC, but it is by Crohn's (the reason I can't have a j-pouch).

Pouchitis isn't Crohn's either by the way.

*sigh* I wish I lived in a time where medical science could create artificial pouches or grow new colons - one or the other.
Posted 2/14/2014 7:30 PM (GMT 0)
NCOT,
Has your crohn's ever presented in your small intestine? I know a few crohnies with j pouches and they do fine. Granted, I think they had the j pouch first with a uc dx then the cd dx came after. Have you ever discussed it with your doctor? I'm only asking because I know how unhappy you are with your ostomy .
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