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Hi All,

I need some help please.  I need to make a decision to get and end ileostomy or JPouch.  I got sick 20 years ago with colitis and got to the point I needed to get off steroids.  A year ago I had a diversion surgery to give my colon a rest and for a year I have lived with an ileostomy and appliance.  It’s been the best year I have had in twenty.  My main concern is that my output is very watery and I don’t feel well when I take Imodium.  I am afraid that if I go with the JPouch I will run to the bathroom 12 times a day due to the very watery consistency of my output.  I need to make the decision by Thursday which path to take.  I had told the surgeon that I wanted the JPouch last week, and now I am second guessing it.  I am a 50 year old father of 3 young girls.  Thanks Doug 

Original Post

I had my J-pouch surgery when I was 44 and my girls were young. I was also stuck on steroids. It has worked very well for me, and gave me my life back. When my daughter asked me to study a martial art with her I was able to do it thanks to my J-pouch. I didn’t have an ostomy to compare it to, though, and J-pouch surgery is a time consuming and challenging process. The consistency of your J-pouch output is likely to be different from your current output, and there are pretty easy ways to tinker with it. In any case, most J-pouchers don’t have urgency, and use the toilet 4-6 times per day.

If Imodium isn’t a good choice for you you might want to try Lomotil.

Good luck!

Hi Doug,

I had my takedown for my pouch at age 60, almost 61.  I take Lomotil in the evenings at during the day as needed.  I keep pretty active and will be 66 this year.  I hike, bike or walk most days.  I find that if I am going out for a longer day, I empty my pouch as much as possible after breakfast and take 2 Lomotil out the door.  My output from my pouch is not the same as the bag was.  Diet also makes a difference. I have 2 hikes and a bike ride planned this week.  Just remember that the adjustment period takes a while and that most j-pouchers do well.  I am not on any medications other than Lomotil.  I do use Benefiber daily and vitamin supplements and Align.  Good luck with your decision!

In my honest opinion, if it is not broke do not fix it. If you can live with an ileostomy and your not having any problems, I would choose the ileostomy. An ileostomy did not work out for me so a J-pouch was way better for me. So far its been almost 6 years and I am doing perfect with nothing wrong.

I am a J-poucher that goes anywhere between 13-20x a day, I am in the 9% of the J-pouch community that goes that often- and honestly after a while, you get use to it. Some days can be harder than most but I am honestly doing okay with it. My pouch has given me peace. If you are in the 9% with me, its going to be okay

I am a rare case though, 9% is pretty low.  

Last edited by Lauren Of Emerald City

Hi Lauren,

Thanks for sharing your story.  I am glad that you are doing well.  I appreciate your advice very much.  If I may, I would like to ask you a few questions if you are comfortable with that.  

Are you taking any medicines to slow down your bowel movements?  

For me, going 13x-20x a day would be very hard.  At least for me, I think it would be difficult to keep my current job.  I want a life without the appliance if possible, but the prospect of going 13x-20x scares me.  Are there any functionality issues with your JPouch?  Or is it just quicker transit time?  What issues did you have with the appliance?

Thanks Doug 

@Doug K posted:

Hi Lauren,

Thanks for sharing your story.  I am glad that you are doing well.  I appreciate your advice very much.  If I may, I would like to ask you a few questions if you are comfortable with that.  

Are you taking any medicines to slow down your bowel movements?  

For me, going 13x-20x a day would be very hard.  At least for me, I think it would be difficult to keep my current job.  I want a life without the appliance if possible, but the prospect of going 13x-20x scares me.  Are there any functionality issues with your JPouch?  Or is it just quicker transit time?  What issues did you have with the appliance?

Thanks Doug 

I would be more than happy to answer all of your questions. No question is off limits for me, so anything you need to be answered, ask me.

In my early takedown days, I would take Loperamide a lot, this was like almost 6 years ago. I was going probably around 30-40x but after the pouch healed up and everything stretched out pretty good its now 13-20x. Loperamide clogs me up now ironically lol so I do not take anything to slow my BMS down. 

Every job should accommodate their employees but I know life is not always fair unfortunately and bosses can be $%#@! But my case is extremely rare (9% chance) but it is still a possibility for you. 

I never had any major problems with my Pouch, if I do not drink enough water I get constipated but nothing major. I did have 1 ulcer in my pouch but the biospy said it was normal, I am not taking any meds for my pouch. 

Most of the time it is quick transit time like a minute, very rarely I stay on the toilet for more than 5 minutes. Everything is pretty quick. I use wipes. 

When I had an ostomy, I suffered many blockages even when I was not eating. The doctors/surgeons said I have very thick/muscular abdominal walls so because of that I suffered many blockages. Not many people are skinny/muscular when they get ostomys so my case was very rare. The surgeons even tried to open up the stoma surgically to get things moving but unfortunately that failed. I had to have a catheter in my stoma 24/7 for two months until takedown. Otherwise I would suffer obstructions/blockages.

I honestly wish the ostomy would have worked out but I guess I was not meant for it. I am much happy with my J-pouch.

Anymore questions??? 

Wow - thanks for sharing.  My ileostomy has been so easy, but I have decided to go with the JPouch, but if it fails to give me the quality of life I want, I can always go back to the ileostomy.  I hope I am in the 91%, but you seem to be doing well in the 9%.  Last 2 questions- did you ever try fiber to slow things down, and do you have control or ample time to make it to the bathroom?

@Doug K posted:

Wow - thanks for sharing.  My ileostomy has been so easy, but I have decided to go with the JPouch, but if it fails to give me the quality of life I want, I can always go back to the ileostomy.  I hope I am in the 91%, but you seem to be doing well in the 9%.  Last 2 questions- did you ever try fiber to slow things down, and do you have control or ample time to make it to the bathroom?

Of course, any time! Let me know how everything goes. If I were you, I would keep the ostomy since you are not having any problems but if your heart is saying J-pouch surgery, then definitely follow your heart! And yeah I am doing great in the 9%, I have talked to other people in the 9% with me and they are doing great too- we are pretty happy. I am sure you will do great whatever group you may end up in. 

Yeah, I tried fiber to slow things down, I still fall between 13-20x a day though. Nothing really helps that situation for me but I have accepted that and learned to live with it. I was miserable when I had my colon and now that it is gone, I finally have peace. J-pouch surgery gave me ease. What I have now is way better then before. 

Yeah, I have time to make it to the bathroom just perfectly. I always go when I have my first urge so that gives me plenty of time. If I am waiting in line in a public place, I can wait in line until its my turn. If I am sleeping, my pouch wakes me up to go and I walk to the bathroom normally and use it without rushing to the bathroom. 

When I first got J-pouch surgery: I was RUNNING to the bathroom, leaking on myself, I had to wear diapers whenever I slept. That is only the early beginning though, things get better as time goes on; I do not have that anymore. Be very careful in the beginning and definitely watch out for butt burn, I would recommend diaper rash cream like sensicare skin barrier cream- that works wonders. 

@Doug K posted:

Thanks!  I will let you know how it goes.  Best Doug 

Anytime! No question is off-limits so ask away anytime I will try to check in with you on Thursday to see how things are going. And great! I will be more than happy to hear how things go! I hope everything goes well! It will be a lot of pain after the surgeries but its worth it in the long run. 

Sending lots of light your way, best of luck!  

@Doug K posted:

Hi All,

I need some help please.  I need to make a decision to get and end ileostomy or JPouch.

 J pouch, j pouch, j pouch every time.

I’ve had my J pouch coming up to 6 years, I have on average 3 to 4 BMs per day, sometimes and vary rarely 5; it’s been like this from day one; there has never been any urgency or accidents; 
I can go for hours and hours between BMs, most recently, as long as 12 hours.

I take 4 loperamide per day, sometimes 6, although I tend to forget but there’s no noticeable difference when I do forget.

I’ve never experienced any blockages, butt burn or whatever, other than bouts of fatigue, no complications at all.

Although finding this forum has  helped me more than I could have ever have imagined; there’s so many horror stories, it make you wonder... do I want to endure this ?

People turn to the internet and web forums when problems arise, therefore, there’e many more stories of complications and experiencing 13 or more BMs per day on here; because maybe 70-80% of forum members are experiencing complications; thus, this web forum is not a true reflection to the success of J pouch surgery and the quality of life a j pouch can provide. 

Prior to my J pouch I had a very successful end ileostomy for roughly 10 years; supposedly I was fixed; however, choosing the J pouch was the best and biggest decision I’ve ever made, and there’s no regrets.

There’s no feeling in world that can compare to looking at myself in the mirror without the colostomy bag hanging off my abdomen.

J pouch, every time and only think about the possibility of complications when they arise.

Did you stop to bring Daughters into the world due to the possibility of what if ?

Last edited by strange

Hi All - Went for the JPouch!!!  5 days post op now.  The surgery was easy - except for the first night (that was rough).  Now I live with the loop for 3 or 4 months.  I hope this JPouch does not fail me.  Dr.  Remzi at NYU did my surgery- he is wonderful and I trust he built a good pouch.  Please give me positive thoughts - I am trying to stay positive and optimistic- which is not my nature.  Thanks Doug 

 

@Doug K posted:

Hi All - Went for the JPouch!!!  5 days post op now.  The surgery was easy - except for the first night (that was rough).  Now I live with the loop for 3 or 4 months.  I hope this JPouch does not fail me.  Dr.  Remzi at NYU did my surgery- he is wonderful and I trust he built a good pouch.  Please give me positive thoughts - I am trying to stay positive and optimistic- which is not my nature.  Thanks Doug 

 

HEY DOUG!!!! I am happy you are okay!!! I hear great things about Dr. Remzi, I am sure he did great! Soo happy you are okay!  

I am glad you did not run off to Vegas hahaa

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