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Posted 7/29/2015 9:57 PM (GMT 0)
I had a total colectomy and ileostomy surgery on the 9th of July. The plan is to get completely off of prednisone (I'm on 10 MG now but have had a terrible time in the past coming off the steroids so I'm HOPING it works out well this time around...) then in a few months have the surgery for the j pouch but I have a few concerns. First of all, could anyone tell me exactly what the j pouch is, how it works, and what I should expect during/after the surgery?
I'm also scared that if I do go through with this I'll go back to square one- urgent, frequent stools multiple times a day/night. I don't want that. In fact, I'm terrified of that. Especially the urgency.
Has anyone had similar worries? Can you tell me how your life was/is after having the j pouch as well?
Thanks

Post Edited (Niks) : 7/29/2015 6:41:25 PM (GMT-6)

Posted 7/30/2015 12:01 AM (GMT 0)
First of all, could anyone tell me exactly what the j pouch is, how it works, and what I should expect during/after the surgery? All answered here: http://www.stomawise.co.uk/types-of-stoma/ileo-anal-pouch-j-pouch
As for do you get one? Man, that's a loaded question, you'll get lots of answers here, and they'll be based on the personal experience of those that give them. I'd say no, but then I've had nothing but trouble since my takedown in November. Lots here will say yes, as they're doing great with theirs. I'll ask you some questions. How are you coping with an Ileostomy? How's your quality of life with an Ileostomy? Are you happy/just ok/depressed with your Ileostomy?
Posted 7/30/2015 12:29 AM (GMT 0)

Silent Lucidity said...
First of all, could anyone tell me exactly what the j pouch is, how it works, and what I should expect during/after the surgery? All answered here: http://www.stomawise.co.uk/types-of-stoma/ileo-anal-pouch-j-pouch
As for do you get one? Man, that's a loaded question, you'll get lots of answers here, and they'll be based on the personal experience of those that give them. I'd say no, but then I've had nothing but trouble since my takedown in November. Lots here will say yes, as they're doing great with theirs. I'll ask you some questions. How are you coping with an Ileostomy? How's your quality of life with an Ileostomy? Are you happy/just ok/depressed with your Ileostomy?

That's kind of hard to answer, honestly. It's only been a few weeks since surgery so I'm still sore and weak. I think I'm coping with the ostomy itself well but the illness, surgeries, and everything as a whole is stressing me out both mentally and physically. I've been doing better than I had been before the surgery, but I'm on prednisone still so that may be contributing to my feeling "well". The past few days I've had consistent abdominal pains and bloating as well which hasn't exactly helped my mental state. Really hoping it's just trapped gas but I have a tendency to be pessimistic in these situations..
Posted 7/30/2015 12:49 AM (GMT 0)
My apologies, I hadn't taken in how new you were to an Ileostomy. You haven't said if you have a pouch already constructed or not? If you have already had j-pouch construction, you will have a "loop" Ileostomy. These are generally much harder to deal with than an "end" Ileostomy, and won't give you a true picture of life as an ostomate. However, this would also mean you've done all the "hard" surgery, and would be just as well to do "takedown" later and try j-pouch life.
However, if you don't have a pouch already constructed, you should have an "end" Ileostomy. In that case, my advice would be to see how the next 6-12 months go, and then assess how you feel.
Posted 7/30/2015 2:22 AM (GMT 0)
Niks, I agree, give yourself some time. I had my pouch for 15 years. Nothing but trouble but now I miss it and am back to sq one. The only "cure" for UC is a ostomy. If I could have seen the future I would have never gone forward.
Posted 7/30/2015 2:26 AM (GMT 0)
Niks - you'll need to wait for responses from the j-pouch crowd. I don't want to bias you one way or the other - it's your decision. I chose an ileostomy because 1) I felt like you know what, 2) several years of prednisone use really weighed upon me, 3) even though the two surgeons I went to said I was a good candidate for a j-pouch, I could not fathom having to go through three surgeries - and, after the colon was removed, I knew I could not have handled going back to the hospital for surgery two and possibly surgery three. but, that's my story.

the j-pouchers should respond to your post and give you their stories.

Best of luck which ever way you choose! :-)
Posted 7/30/2015 11:08 AM (GMT 0)

Niks said...
I had a total colectomy and ileostomy surgery on the 9th of July. The plan is to get completely off of prednisone (I'm on 10 MG now but have had a terrible time in the past coming off the steroids so I'm HOPING it works out well this time around...) then in a few months have the surgery for the j pouch but I have a few concerns. First of all, could anyone tell me exactly what the j pouch is, how it works, and what I should expect during/after the surgery?
I'm also scared that if I do go through with this I'll go back to square one- urgent, frequent stools multiple times a day/night. I don't want that. In fact, I'm terrified of that. Especially the urgency.
Has anyone had similar worries? Can you tell me how your life was/is after having the j pouch as well?
Thanks

The j pouch is an internal pouch made from a portion of your small intestine. It's brought down and made into a j shape and attached to a very small amount of rectal cuff that is left. It essentially becomes your new rectum. Stool enters the j pouch and stays there until you feel the urge to go. Since you've already had your colectomy, your next step would be the removal of your rectum and the creation of the j pouch. Then after some healing time, your takedown surgery. (Ileostomy reversal). Expect frequent trips to the bathroom after takedown until your body adjusts to its new plumbing. This will vary from person to person. I never really had a lot of bm's even right after.

My life with my j pouch has been great and returned to normal. I use the bathroom about 4x a day with no urgency at all. I can hold it for a long time if need be. I'm on vacation right now and I was fishing with my son and my brother in law yesterday out on the boat for 6 hours. Toward the end of the trip I felt like I had to go but was able to hold it no problem until we got back. I can also eat a normal diet....no restrictions. My sister and my uncle also have j pouches....my sis for 23 yrs and my uncle 18 years. They have also done well with no issues.

It's very important to have an experienced surgeon who has done many j pouch procedures.
Posted 7/30/2015 11:59 AM (GMT 0)
You should give yourself some time with the stoma to get an educated opinion on whether it will offer you a sufficient quality of life. I would advise that if after 2 months (and really optimizing your stoma hardware) you are happy don't think about any more surgery unless it is necessary.
Posted 7/30/2015 2:38 PM (GMT 0)
Give yourself a couple months with the ileostomy before you even consider more surgery for a j pouch. If you do have the j pouch surgery, its a toss up of how it will turn out for you. They claim the success rate for a j pouch is high, but I dont believe it. People I've known with a j pouch, were sick, had pouchitis, looked like death warmed over, and yet they bragged up the j pouch, just because they refuse anything to do with an ileostomy. If it works well, you will love it. If it does not work well, you will be kicking yourself every day for not staying with the ileostomy. My j pouch almost drove to suicide a couple of times it was so miserable. Many times it was as bad or worse than U.C. Cramps, diarrhea, up running to the bathroom all night was my life for years. Now i have a disconnected pouch, and an ileostomy. Just having it disconnected feels like heaven to me. I hope your results are better than mine was.
Posted 7/30/2015 8:07 PM (GMT 0)

gmark said...
Give yourself a couple months with the ileostomy before you even consider more surgery for a j pouch. If you do have the j pouch surgery, its a toss up of how it will turn out for you. They claim the success rate for a j pouch is high, but I dont believe it. People I've known with a j pouch, were sick, had pouchitis, looked like death warmed over, and yet they bragged up the j pouch, just because they refuse anything to do with an ileostomy. If it works well, you will love it. If it does not work well, you will be kicking yourself every day for not staying with the ileostomy. My j pouch almost drove to suicide a couple of times it was so miserable. Many times it was as bad or worse than U.C. Cramps, diarrhea, up running to the bathroom all night was my life for years. Now i have a disconnected pouch, and an ileostomy. Just having it disconnected feels like heaven to me. I hope your results are better than mine was.

How is your life whether with j pouch or not, can you work, and what kind of jobs can we handle?
Posted 7/30/2015 9:01 PM (GMT 0)

ByeByeUC said...

Niks said...
I had a total colectomy and ileostomy surgery on the 9th of July. The plan is to get completely off of prednisone (I'm on 10 MG now but have had a terrible time in the past coming off the steroids so I'm HOPING it works out well this time around...) then in a few months have the surgery for the j pouch but I have a few concerns. First of all, could anyone tell me exactly what the j pouch is, how it works, and what I should expect during/after the surgery?
I'm also scared that if I do go through with this I'll go back to square one- urgent, frequent stools multiple times a day/night. I don't want that. In fact, I'm terrified of that. Especially the urgency.
Has anyone had similar worries? Can you tell me how your life was/is after having the j pouch as well?
Thanks

The j pouch is an internal pouch made from a portion of your small intestine. It's brought down and made into a j shape and attached to a very small amount of rectal cuff that is left. It essentially becomes your new rectum. Stool enters the j pouch and stays there until you feel the urge to go. Since you've already had your colectomy, your next step would be the removal of your rectum and the creation of the j pouch. Then after some healing time, your takedown surgery. (Ileostomy reversal). Expect frequent trips to the bathroom after takedown until your body adjusts to its new plumbing. This will vary from person to person. I never really had a lot of bm's even right after.

My life with my j pouch has been great and returned to normal. I use the bathroom about 4x a day with no urgency at all. I can hold it for a long time if need be. I'm on vacation right now and I was fishing with my son and my brother in law yesterday out on the boat for 6 hours. Toward the end of the trip I felt like I had to go but was able to hold it no problem until we got back. I can also eat a normal diet....no restrictions. My sister and my uncle also have j pouches....my sis for 23 yrs and my uncle 18 years. They have also done well with no issues.

It's very important to have an experienced surgeon who has done many j pouch procedures.

Wow that's awesome, congrats! But I've heard a lot of things about the j pouch- some say it was the best decision, some say it's the worst they've ever made. I don't know what to think. The ostomy is annoying but I'm slowly getting used to it. I certainly don't want to live with it for the rest of my life but I also don't want to go through with the j pouch surgery if it's not going to be very beneficial for me. Do you have any idea of the success rate with getting the j pouch? Or any idea why some people suffer and some say it's the best thing to ever happen to them? Could it be a medication or other health reasons that the j pouch effects people differently?
Thanks for your reply!!
Posted 7/30/2015 9:05 PM (GMT 0)

susans53 said...
Niks, I agree, give yourself some time. I had my pouch for 15 years. Nothing but trouble but now I miss it and am back to sq one. The only "cure" for UC is a ostomy. If I could have seen the future I would have never gone forward.

I'm sorry to hear that :/ what exactly did you experience after the j pouch surgery? Do you think there was any specific reason you had such a tough time with it? Also, if one goes thorough with the j pouch surgery and it doesn't work out can they go back to having an ostomy? Is that what you did?
Thank you
Posted 7/30/2015 9:08 PM (GMT 0)

gmark said...
Give yourself a couple months with the ileostomy before you even consider more surgery for a j pouch. If you do have the j pouch surgery, its a toss up of how it will turn out for you. They claim the success rate for a j pouch is high, but I dont believe it. People I've known with a j pouch, were sick, had pouchitis, looked like death warmed over, and yet they bragged up the j pouch, just because they refuse anything to do with an ileostomy. If it works well, you will love it. If it does not work well, you will be kicking yourself every day for not staying with the ileostomy. My j pouch almost drove to suicide a couple of times it was so miserable. Many times it was as bad or worse than U.C. Cramps, diarrhea, up running to the bathroom all night was my life for years. Now i have a disconnected pouch, and an ileostomy. Just having it disconnected feels like heaven to me. I hope your results are better than mine was.

Wow I'm very sorry to hear that..
What exactly did you experince with the j pouch? And how long until you were able to have it disconnected again? Also, were there any specific reasons you had such a tough time with the pouch? I obviously do not want to live with an ostomy for the rest of my life but I also don't want to go through a living hell with having a j pouch either..
Thank you
Posted 7/30/2015 9:40 PM (GMT 0)
Niks, you can return to an ostomy from j-pouch, but it's more major surgery and not to be taken lightly. This is the situation I'm now facing. I have a pouchoscopy next week, and if nothing treatable is found, I face many years of misery, or another heavy duty op. I honestly think you need to try the ostomy for a good 6-12 months before making any decisions, mine always take a good 6-8 weeks to settle down after surgery.
This is of course if you have what I call a "proper" Ileostomy (end), which you haven't specified yet...........
susans53, you had 15 years of trouble but MISS your pouch?!?!?! Could you please elaborate on this a bit please? As I said previously, this is a decision I could be facing very soon.
Posted 7/30/2015 9:58 PM (GMT 0)
When I met with my surgeon and he said 95% were successful and only 5% failed, I didn't believe him. I have no idea what I think the number is but I don't think it's that high.

With that said I wish i had more info about success vs failure according to the patients current health, steroid status, and 2 step vs 3 step. I feel like there are a lot of factors they may make some more likely to have a less than favorable outcome. But that info I can't find.

The only surgeon I have met with believes 3 steps have the best outcome but I see a lot of happy jpouchers on here that all had 2 step.
Posted 7/30/2015 10:43 PM (GMT 0)

Silent Lucidity said...
Niks, you can return to an ostomy from j-pouch, but it's more major surgery and not to be taken lightly. This is the situation I'm now facing. I have a pouchoscopy next week, and if nothing treatable is found, I face many years of misery, or another heavy duty op. I honestly think you need to try the ostomy for a good 6-12 months before making any decisions, mine always take a good 6-8 weeks to settle down after surgery.
This is of course if you have what I call a "proper" Ileostomy (end), which you haven't specified yet...........
susans53, you had 15 years of trouble but MISS your pouch?!?!?! Could you please elaborate on this a bit please? As I said previously, this is a decision I could be facing very soon.

What would make going back to an ostomy after having the j pouch more major? Are there certain complications?
And I have an end ileostomy.
Posted 7/30/2015 11:22 PM (GMT 0)
Niks, when I said more, I meant another. However, there are some implications to a return to ostomy. Some surgeons will deconstruct the pouch, but that definitely is a more major surgery in the literal sense. That would also carry the same risks of erectile dysfunction and urinary incontinence as pouch construction does (if, of course, you're a male!).
Many surgeons will cut the intestine higher up and leave the pouch "in situ". I haven't fully read up on the long term implications of this, but believe the main one is the need to regularly purge the pouch of mucous. This wouldn't phase me,as I got used to that between steps 2 and 3 previously.
If you have an end Ileostomy, you are in the best position to "test drive" life as an ostomate. I wasn't unhappy with mine, it was just the thought of "what if", wondering what life would be like with a j-pouch.
It can be a very tough choice to make, I took three years to decide to try it. People can only offer up their own experience's, the ultimate call is yours. I think one thing to bear in mind though, is once the Colon is gone, we're never the same, there are pros and cons to all the alternatives. I don't disbelieve people that say they're happy with their pouch, but don't misread that as meaning their life is the same as it was with a functioning(complete remission or before UC, Chrohns etc) Colon, because I guarantee it isn't.
Posted 7/30/2015 11:49 PM (GMT 0)

Silent Lucidity said...
Niks, when I said more, I meant another. However, there are some implications to a return to ostomy. Some surgeons will deconstruct the pouch, but that definitely is a more major surgery in the literal sense. That would also carry the same risks of erectile dysfunction and urinary incontinence as pouch construction does (if, of course, you're a male!).
Many surgeons will cut the intestine higher up and leave the pouch "in situ". I haven't fully read up on the long term implications of this, but believe the main one is the need to regularly purge the pouch of mucous. This wouldn't phase me,as I got used to that between steps 2 and 3 previously.
If you have an end Ileostomy, you are in the best position to "test drive" life as an ostomate. I wasn't unhappy with mine, it was just the thought of "what if", wondering what life would be like with a j-pouch.
It can be a very tough choice to make, I took three years to decide to try it. People can only offer up their own experience's, the ultimate call is yours. I think one thing to bear in mind though, is once the Colon is gone, we're never the same, there are pros and cons to all the alternatives. I don't disbelieve people that say they're happy with their pouch, but don't misread that as meaning their life is the same as it was with a functioning(complete remission or before UC, Chrohns etc) Colon, because I guarantee it isn't.

Your replies have been very helpful thank you!
Hopefully whatever decision I end up making, it's a good one..
Posted 7/31/2015 12:01 AM (GMT 0)
Niks, something to guide you along the path as an ostomate. Most of us get issues at some point, usually leak and skin related. Many people develop a relationship with a good stoma nurse that will help with these issues. The other method, and it was my method of choice, is in this glorious day of the internet, you can order free samples from almost all of the various supplies companies. With trial and error you will find the products and methods of application that work best for you.
I had a terrible time with my loop ostomy after stage two, but after a couple of months I had it under control and could have lived with it for years, and that's a LOOP!
So, if you get some hard times in these early days, just apply yourself to finding what works. Only once you've done that, and lived with it for a while, can you make an educated decision on whether or not to pursue a j-pouch.
Posted 7/31/2015 9:58 AM (GMT 0)
I wouldn't give it longer than a year to make up your mind. I had my end ileostomy for 2 and a half years before being reconnected 3 weeks ago. I didn't have a j-pouch constructed - it was just a straightforward join of the ileum to the rectum - but the same principle applies: my bowel needs to retrain itself to adjust to the new plumbing. This will take about 1-2 years, as it did with the stoma. The bowel is a tube with a muscular layer and nerves all the way along it. These nerves communicate with each other in order to make the muscles work in tandem to push the food along. As you can imagine, chopping and changing the bowel about rudely disrupts this finely-tuned communication.

After two years, my bowel was utterly adapted to the stoma. It still 'remembers' the stoma and it tries to push food into something which no longer exists. Basically, my bowel has more training to do than in somebody who only had their stoma for a few weeks/months.

That said, I'm certainly not recommending rushing into a decision right now. I would give it a few months to get over the first surgery, get off Pred, and see how you get on with an ostomy. But I would make up your mind within the first year, as recovery won't be any better if you wait 2 or 3 years - and may well be even worse and take even longer.
Posted 7/31/2015 4:13 PM (GMT 0)
Amazing stories. I had surgery with a permanent ileo 6 weeks ago. I agree that we are never the same after these replumbing events. That said my ileo is "The Little Train that Could". It has adapted pretty quickly to its new role; output is thick which is a good thing; I drain my bag about 5-6 times a day (I assume frequency will reduce with time); gas issues have resolved. Skin issues under the wafer are a challenge, but they are for everybody. I can eat basically anything, except for large portions of salad or raw foods. A lot of ileo issues are related to acceptance; and I also deal with that. I was not a candidate for a J pouch (over 50). I suspect that if you have an end ileo, life will be pretty fine in the next few months and the new ileo will serve its purpose well. Get your strength back and then see if you really want to go through more surgery.
Posted 7/31/2015 6:48 PM (GMT 0)
Niks, my pouch from the start had pouchitis and cuffitis. Oh that cuffitis hurt! . First I had a redo to remove the cuff. Then I got constant pouchitis. Extreme diarrhea, anal pain! sick, passed blood. ! ulcers. Controlled by meds. In fact I had more meds with the pouch then with the UC. Then the meds stopped working. I tried everything. My pouch just literally gave out. I could not eat, nauseau, bloating, pouch was not working, awful. Spent 2 weeks in hospital. It was not even too bad, but you never know how it's going to affect you. Pouch had to be diverted. Was it a shock, yes and no, knew it was coming just kinda put it out of my head. Didn't think it would blow so quickly. Having a hard time recovering from surgery so I'm doubly unhappy right now. It was a 15 year tease. Was told 15 years ago it would last forever, pouchitis easy to control. No one removed or diverted their pouches. In 15 years things have changed. Problems coming up. Just also remember the more surgeries u have the more adhesions you can form. 5 years ago I had to have lysis of adhesions. Too many surgeries for this. Some times if things work it's best to leave it alone. Good luck with your decision
Posted 7/31/2015 7:12 PM (GMT 0)
Wow...this is an interesting thread. Marinmom...can't believe you were told you were not a J-Pouch candidate because you were over 50!!! I am closer to 60 than 50 and just had my J-Pouch created in Oct with takedown in January. I hated my loop ileostomy and just the bag in general (ordering supplies, having extras available, etc). Wanted to get as close to "normal" as I could. The first few months after takedown were challenging but my surgeon was very upfront and it was actually better than I expected. At 6 months, I go about 6-8 x a day (depends on what I eat and drink...alcohol increases frequency) but it is not urgent at all and NOTHING like UC. I can hold it no problem (just slight discomfort). I did not have an end ileostomy so don't know what that is like compared to the loop. I pretty much eat & drink what I want to (although some things tend to irritate on the way out so I avoid them). I lead a very active lifestyle (golf 18 holes 3-4x week, teach Zumba classes 4x week, etc. and have been back doing these things since 6 weeks after takedown) and for me the J-Pouch was the right choice. Good luck with whatever you choose but I'm a happy J-Poucher.

Vicki
Posted 7/31/2015 9:35 PM (GMT 0)
Vicki I envy you. Susans53, I agree with the "if things work, best to leave them alone" sentiment wholeheartedly, I know I wish I had. If only I'd procrastinated a little longer, I'm sure our NHS will be refusing these surgeries to people in the situation I was (already created, perfectly functioning end ileo, with no majo leakage or skin problems). Now that I think of it, why IS the NHS wasting money on people like me? And now I may end up going back, at MORE expense. That's pretty depressing, to have become such a burden on a crumbling health system.
Posted 7/31/2015 10:27 PM (GMT 0)
Silent, 15 years ago this was the best option given to me. It was still fairly new. Now that they have done so many problems are arising. I was shocked recently when I went on the jpouch board to see a lot of my old friends having issues years later.
Why do I miss my pouch, when the meds always worked. I felt normal. I felt good.
Now I have an ostomy. It was a tease. I don't want this. The whole thought of it is depressing me at the moment. Having to order supplies, caring change of clothes, wearing this bag.
I'm also having a hard recovery this time around. I'm so overwhelmingly tired! I have no appetite. Granted I'm only 2 weeks out but I'm running low on patience. If I just kepted things as is I would not have been going thru this now. 15 years ago I made it thru 3 surgeries in a year, one to create, one to clean up the surgical complications and then takedown.
And yes, I was just diverted as removal is a harder surgery and I just hope it never gets to that point. More surgery, more complications, more adhesions, it's enough already.
Why do you think you might lose your pouch?
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