Going from J pouch back to ileostomy

Before you get a bag: Have you exhausted all possibilities???? I just do not want you to have regrets down the road

Have you tried anti-diarrhea medicine???

There are certainly folks here who've reverted to an end-ileostomy, though most don't visit very often (they're doing fine). We've also had folks here who've had untreated chronic pouchitis for many years, and just needed to start antibiotics or a biologic medication. Is it correct that you've explored treatment options with a knowledgeable gastroenterologist? If not then it just sounds like pouchitis to me.

I went for years without knowing much about my reconstructed guts or making any allowances, but then I started noticing that things were getting worse.  I was spending more time being sore, having more incidents of partial obstructions, and my guts were becoming increasingly sensitive to many foods. Due to my age and their misuse, my intestines had become weak and floppy from so much watery waste passing through so quickly and had lost much of their integrity. The years of fast motility was abrasive and made them sore and sensitive! My friend recommended that I try psyllium. I noticed that the ingestion of organic, fine ground psyllium (mixed with plenty of water) before each meal made my insides so much happier. It was like PT for my guts. It helped with butt burn, too, though Calmoseptine (or some other barrier ointment) also was/is needed as a backup for continued comfort. I noticed the results of the psyllium rather quickly. It might not be an answer for everyone, but it helped me a great deal.  Here's one that I particularly like (https://www.iherb.com/pr/front...er-16-oz-453-g/31080), but you can also get psyllium in your health food store or grocery store. Metamucil is another form people take psyllium in.  It's not fine ground (more gentle on sore tissues) or organic and it has stuff I don't want in it, but some find it helps them.

It always seems difficult on this site to get info on reversal before getting through all of the well intentioned but somehow slightly condescending (yes, we have explored all of our options) advice on pouchitis, fiber, water, BCIR or revision. There is a world where the pouch has run its course and while not ideal a return to an ostomy is the best option and shouldn’t be treated as the end of the world…particularly on this site where many have had one and not an insignificant number will end up there. It’s been the topic for which I’ve seen the least support.  So much activity/support for thread after thread after thread on probiotics, wipes, calmoseptine, antibiotics, biologics (how to make a jpouch less miserable) but post something on jpouch removal and the advice revolves around how  to suffer longer with the Jpouch, how to get another Jpouch or a different internal pouch, and how awful (with some exceptions) the appliance was.  I hope things change over time but just may be the nature of such sites.

Jim, I’m in the process of returning to the bag.  I catalogued my issues in prior posts but in short I’ve had a leak at the anastomotic site from day one causing a persistent sinus track and chronic bone infection. I’ve had 4 sinusotomies  (endoscopic surgery) and some banding procedures (also have a prolapse) from one of the best and he has not been able to fix the sinus tract. He recommended pouch revision as my only option (did not even mention ostomy so he would love this site), but I don’t want to lose another 1-2 years of my life with no guarantees that the next Jpouch would be any better (revisions are extremely complex surgeries with higher complication rates).

I have my pre-op appt in a few weeks and plan to ask:

-how many excisions my surgeon has done (he did my original 3 stage and despite the issues I’ve had, I know he’s talented and have had others at bigger centers comment on the excellent pouch he constructed, minus the leak). I’m more worried about volume in terms of his team and the medical center itself

-I’ll ask about complication rate including loss of sexual function (I’m a female and most studies ignore us and only report impotence rates in men)

-I had damage done to a fallopian tube and ovary during stage 2 due to a pelvic abscess and a gynecologist recommended having these removed to prevent issues down the road if I have another colorectal surgery. Will need to explore that. More relevant to you may be repair of any hernias while they’re in there. Also my surgeon mentioned the possibility of placing mesh at the ostomy site (will use the same one as for temp ileo and loop ileo) to prevent parastomal hernia. I’m very active and this is a concern but will need to ask about risks/benefits

-Length of hospitalization, recovery at home and time to return to work

-plan to lyse adhesions as I get my fair share of SBOs

-Also some additional issues I’ve been thinking about lately and may apply to you. How do his end ileo patients age with the bag? Any specific concerns for ostomates later in life?

That’s my game plan going in. Also, you mentioned not wanting to be sewn up but think this is standard practice if not wanting to keep your options open for a jpouch down the road. It prevents pesky leakage once healing is complete and is done internally so does not change the appearance of the anus. Any particular concerns that you have regarding it? Curious to know if I’m missing something and should be asking additional questions myself?

Good luck with this part of the journey. I am looking forward to being healthy again with the bag. Just hope I can get there.  Wish you the best and would like to hear how it goes for you.

Hi Jim M,

I have had a JPouch for 3 years, and I can tell you with 100% certainty, for me, I felt healthier with the bag (which I had for 2 years).  I am currently maintaining my Jpouch, and my chronic Pouchitis with antibiotics. I have good days and bad days.  There are certainly pluses to the JPouch, and I am happy that I have tried it. Your dilemma, seems to me, can you improve your quality of life by going back to the bag, and calling it quits with the JPouch? I personally think so - yes. Also, what would you ask the surgeon? As for the surgeon, I would absolutely ask how many JPouch excisions he has done. Not to scare you, but it’s a very complex procedure and you want someone with experience doing a bunch of them. Ask them how many have they done. There are two paths, taking the JPouch out (excising it) or disconnecting it and leaving it in situ, which means leaving it in the body forever, but disconnected. Some surgeons prefer leaving the Jpouch in situ because it’s easier and less damaging than extracting it. However, this is important, in a certain amount of cases the pouch left in situ can get diversion Pouchitis, or other problems. I think the surgical research shows that total Jpouch excision in the long run can be better, but one would have to also consider age here (78), and the amount of scar tissue involved. Each patient is different. The good news, I read a large peer reviewed article that showed patients with JPouch removal and end ileostomy do very well 95% of the time. Also, about closing the anus, I think that is pretty standard if you are getting an excision, I am not sure about the anus in a in situ situation. Closing the anus is a tough part of the surgery/recovery.  Weight is also a factor, being thinner helps. Which is a problem for me.

If it helps, when I evaluate what to do with my JPouch, I think about the possibility of making things worse with the surgery (sexual dysfunction is a major concern), and the difficulty of leaving work and going through another huge surgery is a high hurdle. I am 54 with three kids and downtime is tough to pull off with my job. But it my heart, I feel like that bag would be better for me, because I am still dealing with good days and bad days and lots of medication. In your case, I like the fact that you thrived with the bag for 10 years. Chances are you will do great with the surgery and the bag will be good. The appliances are also getting better all of the time. At your age, I would also wonder if after 35 years of having the Jpouch, are your sphincter muscles able to get strong enough to maintain the Jpouch and prevent leaks. It does makes sense to try different medications to keep the JPouch, but if you have exhausted those, or you are simply tired of going 10x+ day, I would think the bag is a good option. Maybe give yourself 3-6 months to see if medicine can help the leaks.  Good luck Doug K

@Pouch2021 posted:

It always seems difficult on this site to get info on reversal before getting through all of the well intentioned but somehow slightly condescending (yes, we have explored all of our options) advice on pouchitis, fiber, water, BCIR or revision. There is a world where the pouch has run its course and while not ideal a return to an ostomy is the best option and shouldn’t be treated as the end of the world…particularly on this site where many have had one and not an insignificant number will end up there. It’s been the topic for which I’ve seen the least support.  So much activity/support for thread after thread after thread on probiotics, wipes, calmoseptine, antibiotics, biologics (how to make a jpouch less miserable) but post something on jpouch removal and the advice revolves around how  to suffer longer with the Jpouch, how to get another Jpouch or a different internal pouch, and how awful (with some exceptions) the appliance was.  I hope things change over time but just may be the nature of such sites.

Jim, I’m in the process of returning to the bag.  I catalogued my issues in prior posts but in short I’ve had a leak at the anastomotic site from day one causing a persistent sinus track and chronic bone infection. I’ve had 4 sinusotomies  (endoscopic surgery) and some banding procedures (also have a prolapse) from one of the best and he has not been able to fix the sinus tract. He recommended pouch revision as my only option (did not even mention ostomy so he would love this site), but I don’t want to lose another 1-2 years of my life with no guarantees that the next Jpouch would be any better (revisions are extremely complex surgeries with higher complication rates).

I have my pre-op appt in a few weeks and plan to ask:

-how many excisions my surgeon has done (he did my original 3 stage and despite the issues I’ve had, I know he’s talented and have had others at bigger centers comment on the excellent pouch he constructed, minus the leak). I’m more worried about volume in terms of his team and the medical center itself

-I’ll ask about complication rate including loss of sexual function (I’m a female and most studies ignore us and only report impotence rates in men)

-I had damage done to a fallopian tube and ovary during stage 2 due to a pelvic abscess and a gynecologist recommended having these removed to prevent issues down the road if I have another colorectal surgery. Will need to explore that. More relevant to you may be repair of any hernias while they’re in there. Also my surgeon mentioned the possibility of placing mesh at the ostomy site (will use the same one as for temp ileo and loop ileo) to prevent parastomal hernia. I’m very active and this is a concern but will need to ask about risks/benefits

-Length of hospitalization, recovery at home and time to return to work

-plan to lyse adhesions as I get my fair share of SBOs

-Also some additional issues I’ve been thinking about lately and may apply to you. How do his end ileo patients age with the bag? Any specific concerns for ostomates later in life?

That’s my game plan going in. Also, you mentioned not wanting to be sewn up but think this is standard practice if not wanting to keep your options open for a jpouch down the road. It prevents pesky leakage once healing is complete and is done internally so does not change the appearance of the anus. Any particular concerns that you have regarding it? Curious to know if I’m missing something and should be asking additional questions myself?

Good luck with this part of the journey. I am looking forward to being healthy again with the bag. Just hope I can get there.  Wish you the best and would like to hear how it goes for you.

DAMN!!! You have been through hell!! I would go back to a bag too

@Doug K posted:

Hi Jim M,

I have had a JPouch for 3 years, and I can tell you with 100% certainty, for me, I felt healthier with the bag (which I had for 2 years).  I am currently maintaining my Jpouch, and my chronic Pouchitis with antibiotics. I have good days and bad days.  There are certainly pluses to the JPouch, and I am happy that I have tried it. Your dilemma, seems to me, can you improve your quality of life by going back to the bag, and calling it quits with the JPouch? I personally think so - yes. Also, what would you ask the surgeon? As for the surgeon, I would absolutely ask how many JPouch excisions he has done. Not to scare you, but it’s a very complex procedure and you want someone with experience doing a bunch of them. Ask them how many have they done. There are two paths, taking the JPouch out (excising it) or disconnecting it and leaving it in situ, which means leaving it in the body forever, but disconnected. Some surgeons prefer leaving the Jpouch in situ because it’s easier and less damaging than extracting it. However, this is important, in a certain amount of cases the pouch left in situ can get diversion Pouchitis, or other problems. I think the surgical research shows that total Jpouch excision in the long run can be better, but one would have to also consider age here (78), and the amount of scar tissue involved. Each patient is different. The good news, I read a large peer reviewed article that showed patients with JPouch removal and end ileostomy do very well 95% of the time. Also, about closing the anus, I think that is pretty standard if you are getting an excision, I am not sure about the anus in a in situ situation. Closing the anus is a tough part of the surgery/recovery.  Weight is also a factor, being thinner helps. Which is a problem for me.

If it helps, when I evaluate what to do with my JPouch, I think about the possibility of making things worse with the surgery (sexual dysfunction is a major concern), and the difficulty of leaving work and going through another huge surgery is a high hurdle. I am 54 with three kids and downtime is tough to pull off with my job. But it my heart, I feel like that bag would be better for me, because I am still dealing with good days and bad days and lots of medication. In your case, I like the fact that you thrived with the bag for 10 years. Chances are you will do great with the surgery and the bag will be good. The appliances are also getting better all of the time. At your age, I would also wonder if after 35 years of having the Jpouch, are your sphincter muscles able to get strong enough to maintain the Jpouch and prevent leaks. It does makes sense to try different medications to keep the JPouch, but if you have exhausted those, or you are simply tired of going 10x+ day, I would think the bag is a good option. Maybe give yourself 3-6 months to see if medicine can help the leaks.  Good luck Doug K

BEAUTIFUL!

I am grateful for @Lauren and @Doug in PA in responding to the considerations for reversal of the J-pouch. I wonder if we should have a separate Topic for this for others considering it? It might make it easier to find. Clearly the J-pouch does not work for everyone and may run its course, even for those who have not had issues earlier on.  I will try to find the person who sets up the site and make this request. We should all support one another through this journey, no matter where the journey goes.

@RHolt posted:

I am grateful for @Lauren and @Doug in PA in responding to the considerations for reversal of the J-pouch. I wonder if we should have a separate Topic for this for others considering it? It might make it easier to find. Clearly the J-pouch does not work for everyone and may run its course, even for those who have not had issues earlier on.  I will try to find the person who sets up the site and make this request. We should all support one another through this journey, no matter where the journey goes.

You are very welcome hon!! I think you are 100% right!!! I have seen quite a few stories on here about people losing their pouch and going back to a ostomy. Some pouches fail unfortunately, just like with my- my ostomy failed and I needed a J-pouch which is pretty scary. Some situations are not the best for everyone.

The person that is in charge of this site is Jan Dollar - you can send her a private message and talk to her about her about your brilliant recommendation.

I tried to set up a private message to Jan earlier today (I researched and found she was the one), but she has been off-line and I need to check her box to do a private message. I will look again later today.

@RHolt posted:

I tried to set up a private message to Jan earlier today (I researched and found she was the one), but she has been off-line and I need to check her box to do a private message. I will look again later today.

That is interesting, she was online a few hours ago. If she does not respond by the end of today, I would send her another message. I hope she answers because you have a brilliant idea!!! That definitely needs to talked about, I feel like that can help many people.

It is a good idea to have the “move from a JPouch to an end ileostomy” as a topic or category. It’s a tough decision for most that need to go through it.

@Doug K and @Lauren Of Emerald City: I private messaged Jan, although it may have gone only to me (I don't really know how to do it). Jan's "dot" is empty for the private message and it says she is off line, but let's see.  Also, Doug, I am sorry that I mis-referenced you earlier. I referenced a Doug in PA by accident! Oh well. I try. Ha ha.

@RHolt posted:

@Doug K and @Lauren Of Emerald City: I private messaged Jan, although it may have gone only to me (I don't really know how to do it). Jan's "dot" is empty for the private message and it says she is off line, but let's see.  Also, Doug, I am sorry that I mis-referenced you earlier. I referenced a Doug in PA by accident! Oh well. I try. Ha ha.

Yeah it sounds like you did it right! Hopefully she will get back to you. If not, maybe you are meant to do the discussion and start something with it

I would like to thank all of you who responded to my plea for help and advice! I am seeing the colorectal surgeon tomorrow morning and am armed with a load of questions to ask her thanks to your suggestions. I think the idea of having a separate topic related to the possibility of going from a j pouch to an ileostomy would be extremely helpful to a lot of the people on this site. I started with an ileostomy for 10 years and then to a j pouch for 35 years and now feel it's a quality of life issue. The leakage has increased in the last decade, my very short memory on what foods and spicy items, that I love, but should avoid, has led to an often raw, burning back end. Looking back to my ileostomy days, I  really had a system worked out where I could change  the face plate and bag once a week while staying as active as

I  always was as an athlete and physical education teacher/coach.

My plan is to document my journey, starting with my consultation tomorrow, and let all of you know what happens along the way. Hopefully, by helping, giving advice and answering questions about this process, we will all be better informed on making this very personal decision. Again, thanks so much to you all!!

Jim

Good luck Jim - please post how your meetings go. We wish you the best.

@Jim M posted:

I would like to thank all of you who responded to my plea for help and advice! I am seeing the colorectal surgeon tomorrow morning and am armed with a load of questions to ask her thanks to your suggestions. I think the idea of having a separate topic related to the possibility of going from a j pouch to an ileostomy would be extremely helpful to a lot of the people on this site. I started with an ileostomy for 10 years and then to a j pouch for 35 years and now feel it's a quality of life issue. The leakage has increased in the last decade, my very short memory on what foods and spicy items, that I love, but should avoid, has led to an often raw, burning back end. Looking back to my ileostomy days, I  really had a system worked out where I could change  the face plate and bag once a week while staying as active as

I  always was as an athlete and physical education teacher/coach.

My plan is to document my journey, starting with my consultation tomorrow, and let all of you know what happens along the way. Hopefully, by helping, giving advice and answering questions about this process, we will all be better informed on making this very personal decision. Again, thanks so much to you all!!

Jim

Sounds good Jim!!! I am not sure if the anti-diarrhea pills will help you out or not but maybe you can talk about that with your surgeon!

Let us know how it goes!!!

One question occurs to me. If you have the anus sewn shut will that be a problem if you need a prostate check?

@Deb C posted:

One question occurs to me. If you have the anus sewn shut will that be a problem if you need a prostate check?

Good question!!! Not sure if a regular PSA test will do the trick. Good questions, hopefully someone answers

That is a very good question. I never thought of that. Does anyone have a thought here? I assume they can check it with a scan.

@DougK, I found this site with a search online. It may be helpful to you, but it also seems a little scary because it describes some issues people have had with the surgery. https://www.uoaa.org/forum/viewtopic.php?t=26635. Apparently the PSA test can be done and if I biopsy of the prostate is needed, it can be done under anesthesia.  I will keep searching and see if I can find more information to help you.

@RHolt posted:

@DougK, I found this site with a search online. It may be helpful to you, but it also seems a little scary because it describes some issues people have had with the surgery. https://www.uoaa.org/forum/viewtopic.php?t=26635. Apparently the PSA test can be done and if I biopsy of the prostate is needed, it can be done under anesthesia.  I will keep searching and see if I can find more information to help you.

Did Jan message you back???

A few more sites for you on this topic: https://www.inspire.com/groups...they-check-prostate/; and https://crohnsforum.com/thread...371/#google_vignette

I hope these help. That was a really good question that @Lauren asked! I hadn't thought of that potential issue with the rectum/anus sewn shut.

https://www.j-pouch.org/topic/...7#726982264969953437

@Lauren, yes, Jan messaged me back and she is going to pursue starting a separate topic for what to do with J-pouch failure. She said it will not be specific to ileostomy, because there are other options that can be discussed here, too.

And I just realized it was @Debc who posed the question about prostate exam with an anus sewn shut. Apologies to her that I did not properly attribute the Q to her. I have to figure out how to post a reply to someone specifically. I see that you can reference someone's post and then reply, but how???

@RHolt posted:

https://www.j-pouch.org/topic/...7#726982264969953437

@Lauren, yes, Jan messaged me back and she is going to pursue starting a separate topic for what to do with J-pouch failure. She said it will not be specific to ileostomy, because there are other options that can be discussed here, too.

Oh perfect!!! Look at you getting stuff done!!! SO beautiful!!!! I am excited for that topic to start!!! I know UOAA may have the info but yeah we definitely need it here for sure because we are all at risk for that possibility unfortunately.

@RHolt posted:

And I just realized it was @Debc who posed the question about prostate exam with an anus sewn shut. Apologies to her that I did not properly attribute the Q to her. I have to figure out how to post a reply to someone specifically. I see that you can reference someone's post and then reply, but how???

I thought I was going crazy for a sec haha, thank-you

@Lauren Of Emerald City posted:

Oh perfect!!! Look at you getting stuff done!!! SO beautiful!!!! I am excited for that topic to start!!! I know UOAA may have the info but yeah we definitely need it here for sure because we are all at risk for that possibility unfortunately.

Aha! I figured out how to include the response when you want to reply to it! Woo hoo! I just retired and have more time to be on this site, so I am happy to help mention to the gatekeepers if a new topic will be helpful. It sounds like this one will be!

@RHolt posted:

Aha! I figured out how to include the response when you want to reply to it! Woo hoo! I just retired and have more time to be on this site, so I am happy to help mention to the gatekeepers if a new topic will be helpful. It sounds like this one will be!

I agree!!! I am glad you will be on here more often!! I feel like you have great ideas that can help people! We need to keep this site alive!!! You have great ideas!!!

Jim and Pouch2021, others:

thanks for posting about going back to a bag. I'm doing okay now, 7 years later, but I do still have pain, and there are foods I can't eat that I could eat while using the bag. I'm not going to get my J-pouch removed today but I'm in a better space consider,ing it thanks to your posts. Good luck, friends, and thanks.

Sorry to take so long to reply! Since my consultation with the colorectal surgeon at Stanford , I have been very busy, mostly with good things happening, but realized I have put off giving a summary of my meeting with the surgeon. I came prepared with a fairly long list of questions and concerns, many offered by those of you on this site. After describing my situation and describing why I was thinking of going back to an ileostomy, Dr. Kin, described the two surgical options that would be available. The first and most detailed surgery would be to remove the j pouch and seal the anus. Since I  have had two previous abdominal surgeries, she would anticipate scar tissue, which could complicate things. She described that area has nerves controlling bladder function and other issues.  She said leaving the pouch in could lead to possible complications such as mucus discharge and infection. I had 10 years of having an ileostomy with approximately 13" of colon still attached to my anus, occasionally I would have the urge to go, with some blood and mucus discharge, but other than still having an infected portion of colon, it wasn't a big deal.

The second option is simply to perform a simple closed end ileostomy and leave the pouch in. She said that would be a much quicker recovery and if complications did occur with the pouch,  it could be removed later. She said sometimes "less is more ". After a few more questions, which she was great in answering and explaining with diagrams, I decided to go with the second option. I figured at my age, 78, I would hope for the best not having problems with leaving the pouch in. I'm scheduled for surgery at Stanford the first week of November.  To prepare for as quick as possible recovery, I'm working out with a good amount of cardio, light weights with 15 reps and stretching approximately 5 days a week. I had gotten myself in possibly the best shape of my life before my j pouch surgery 35 years ago and it made a huge difference in my recovery!

I again want to thank all of you for your help, suggestions, and encouragement and will follow up with how everything develops.

Jim

Good luck, Jim! I can tell you are a good planner and you have planned well for this, including getting yourself into shape for a good recovery. We will all be thinking of you!

Thanks so much Renee! The last thing I want to do is have another surgery, but this is a quality of life decision. When I had the ileostomy bag for 10 years, I learned  the tricks to get back to my normal self. I was able to do everything I had before, I could participate in my many physical pursuits, eat what I wanted without worrying about my butt burning and not having to spend so much time in the bathroom.

My hope is by sharing this experience of going back to a bag after 35 years of a j pouch, will give those of you who might be considering the idea, a look at what to expect. I want to give you both the good and the not so good results of my adventure. I'm hoping to report, at least the way I look at it,  a very positive future! Wishing you all well!

Jim