Jpouch…yes or no.

Roxy64,

This is a big decision. You’ve had an ileostomy for 5 years and you know what to expect. Having a Jpouch is a nice alternative but it does come with issues all it’s own. I’m sure you have read about them all here on this site.

I am 61 and have had my pouch for 21 years with really only minor problems of pouchitis off and on. I can’t eat everything I’d like to eat, but I’ve adjusted to that. Honestly I do worry about how I will function as I get older. Will I have more “accidents” at night while sleeping, or even during the day.

All the best to you in your journey 😊

I had an ileostomy at 50yrs old, for about two years.  I was absolutely terrified about getting a J Pouch, but I absolutely love it.  I had a large peristomal hernia also.  For me the J Pouch has been great.  But it is a very big surgery at any age.

Thanks for your honest comments. Two surgeries for the pouch are a bit scary, and yes, I have read the comments. I know that most people often post when they need help and some advice when things are not going well. It would be great if everybody posted who is doing wonderfully with their J pouch.

Gosh, I remember a member who was 70ish at the time of her j-pouch and she did great. She was heavily into dancing and continues her activities many years after.

I am 66 and had my surgery at 40 and I am doing fine.

Jan

I had my surgeries starting and 60 and finished just before I turned 61.  I’m 67 now and doing fine!  I sometimes get a little concerned about how it will be when I reach my 80’s.   Both my parents lived into their 90’s.

I'm 65

I tried the j pouch.... Won't go into why it didn't work. It's all over the board

Anyway  I've had an ileo for close to six years now. My surgeon left everything in place after she removed my pouch with the option to get another pouch.

My ileo works so good I would never do another pouch.

Just my opinion.

May I ask why if your ileo is working well and you have no issues with it why would you want a pouch?

Personally I wish I would have wished I went straight to the end ileo.

But the decision is ultimately up to you.

No one can make that for you. You can if course get advice. 

And I sorta gave my advice.

I wish you the best if you decide to do it. It is a major surgery.

70 is the new 50, if your healthy enough to do it. And you've made up your mind. Good luck.

Ya gotta few days to read here and do research. Which I'm sure you have done some.. There is alot of good information here.  The good. The bad. The ugly. It's all here. And that is not to disrespect this site. It's a wonderful place with good people. And alot of advice and information.  Just read between the lines.  Pouches need alot of attention. As where I found my ileo needs much less attention. But what works for me may not for others.

Richard.

I'm 75, had my pouch surgery (2-step) at age 67. I had a few sessions of blockage due to adhesions left from the surgery, but that was completely resolved by minor surgery a few years later to remove the adhesions. I haven't had any other problems. You just have to be accustomed to having more frequent bowel movements and different consistencies depending on what you eat, and not obsessing about that. I much prefer it to the external pouch I had for a few months in between the 2 steps. Good luck to you whatever you decide.

I hated the bag and had it for 13 months.the jpouch is better in that I have no accidents and having to change the bag ,clothing cutting the lawn,working under the house or at 2 am.but if you don't have problems with the bag it's up to you.Its a long recovery of strengthening your bum muscles and letting butt burn die down but if the surgeons think it's ok it might be.bless.

Thank you all so much for the pros and cons and giving your time to offer your thoughts and experience.  
if anyone else wants to add to the above, please do so.

I have a video  consultation with a Cleveland clinic surgeon Monday ( Nov 8). I did some pre-surgical tests there, met the surgeon in person, and  will find out about the test results/their recommendations on the eighth.

If you have any more advice, questions I should ask the surgeon, etc. please post. I would really appreciate anything from those of you with experience with a J pouch. ❤️

Four years ago, at age 63, I had my 2nd and 3rd step surgeries performed at Cleveland Clinic. I picked a surgeon (Dr. Tracy Hull) at CC because I knew I was at the high end of the age scale for a j-pouch. Dr. Hull told me I was a good candidate for the surgery, but she also warned that I could have more bm's than someone younger. I was fine with that at the time, but having a high bm frequency (an avg 9X in 24 hours for me) with butt burn, along with bouts of cuffitis and pouchitis, has been tough. Finding "my diet" has also been a challenge and I've lost 30 pounds that I cannot regain. Would I do the j-pouch again knowing all that? Yes probably! I do worry how well I'll be able to take care of myself later in life as others have stated, but then, how well would I be able to change an external bag or take care of the stoma later in life? Currently I'm able to pick up and play with the grandkids without worrying about getting a kick in the gut (external bag), so I'm happy right now. Best of luck with your decision, it'll work out either way.

@Roxy64 At any given time there are only a modest number of highly successful J-pouchers active here (where people often come for support for problems), but there have been many over the years. You can tap into their experiences by browsing the archives. I’d suggest a simple search for the word “success” as a start, and you can branch out from there if you want more. Good luck!

With or without the bag I would want to be under the house at 2am.....lol... Ugh

;-)

Success, 29 years ago, 2 step surgery.

Thanks again for all your comments, and thoughtfulness!

Please add more!!

Hi Roxy.  Remember that reverting to an ostomy is always possible. 

It is major surgery,  and some people (like me) have complications.  Even so I would do it all again to have the jpouch.  For me it's a lifestyle thing,  I'm very active and was unhappy with the ileostomy.   The jpouch offers me much more freedom.

Yes

Even though my pouch is sound as confirmed by pouchoscopy and

even though I almost died from the surgical processes and

even though I suffer daily from some combination of IPS, cuffititis, pouchititis or SIBO…

i would chose the jpouch over a permanent bag every time!!

News57

you have been through a lot! I hope you are improving daily!!

Did anyone go to Cleveland  Clinic for your surgery?  I was given Dr. Hulobar for a second opinion/ consultation,

. I also went through presurgical testing …lab ( blood), CT scan with contrast, and muscle tests . Did others do all that?

I went for a second opinion at Cleveland clinic Florida. That doctor wanted me to do a CT scan of small intestine to rule out crohns , which is a major contraindication for a jpouch.  I did not do that because for 20 years of UC, it was never mentioned nor showed up on any biopsy.

I will say this as I have many times. Surgery is a guarantee of nothing.

you will probably be fine if you choose well.

even though my pouch is anatomically sound with no strictures, scar tissue or narrowing, I am doing horrible from a functional perspective.  There is no way to predict functional outcomes until the pouch goes live. As I said earlier I would choose the pouch every time. I am just going to have the attitude that my GI doctor is going to figure this all out and perhaps sometime soon, things will settle down, and I can report good news to all.

TMI,   my anal manometry was performed by the surgeon's finger.  I am fortunate to have very strong muscles there,  and have full continence. 

I'm only 5 months since the pouch take-down, right before my 60th birthday, so take this with a grain of salt (or a pinch of psyllium powder.) My care has been excellent. Surgery was without event and I healed quickly, but:

I would think hard before going through the j-pouch surgeries, especially if you were well adjusted to the ostomy.   Statistically results are poorer over age 60. That's not a guaranty, but a consideration. Mostly though the outcomes are variable, the surgery taxing, the immediate post-op difficult, need for additional medication quite possible or likely, and lack  of sleep challenging.  Then there are the food limitations!  My sense of control and quality of life are considerably poorer than what I had after adjusting to the ostomy.  I'm giving the pouch more time, but functionally it is not what I had hoped for.  Seems a lot of trouble to go through just to pass waste through an anatomical opening that does not seem pleased to have been called back into service from a well-earned retirement.

One of the reasons I’m going to have surgery now is because I have a pretty serious hernia that needs to be surgically mended. My understanding is that anybody with an ostomy is going to end up having a hernia since  an ostomy is itself is a hernia. A friend of mine Who has an ileostomy post colon cancer had multiple hernias and ended up in the hospital for 11 days post surgery Because his colon would not start functioning. He is now ok.

My understanding Is there without the J pouch and just a hernia repair no mesh is needed.. There’s never a guarantee that you won’t get another hernia when you have an ileostomy. My understanding is that they can repair this hernia without mesh in the creation of the J pouch, and I won’t have a surgically made hernia ( ileostomy) when all the surgeries are done. Supposedly a percentage wise I will most likely not have another hernia.

Have any of you had hernias since your surgeries were complete?

BTW In my video conference with the doctor he thought I was a good candidate for J pouch surgery. Of course I’m being very cautious I don’t want to lose the quality of life that I have now, Despite already getting up every night, and many times during the day to urinate and empty my ostomy bag.

Please if anyone else has any comments for me or concerns please please please be quiet direct. Right now the surgery won’t happen until January unless they have someone cancel in the first two weeks of December. I have time to do more research and of course converse with others who have gone through all of this.

Please if anyone else has any comments for me or concerns please please please be quite direct. Right now the surgery won’t happen until January unless they have someone cancel in the first two weeks of December. I have time to do more research and of course converse with others who have gone through all of this.

I really and truly appreciate all your comments and concerns thank you so much

Roxy  sorry you have to wait so long with the hernia.  Not surprisingly I do worry about hernias,  but I haven't had one despite four abdominal surgeries for the j pouch plus an earlier one for a kidney donation.  In fact I do a fair amount of core strengthening and also weightlifting.  I even did (very light for me) workouts when I had the ileostomy.  Maybe my strong abdominals pre-surgery helped?  Anyway,  I started back very cautiously after each surgery.   The only weird thing I've noticed is that after the colectomy and first ileostomy I get occasional spasms in my abdomen right under/around the ileostomy site.  It's scary,  but passes after 5 minutes or less.   

All of your comments give me hope for the many years to come with my pouch, thank-you