From Jpouch to perm ileostomy

We have a number of folks here who've gone back to a permanent ileostomy, and I've seen very few regrets.  OTOH you're very early in the process. Have you considered finding a better doctor? It's hard to know if you've really exhausted your options. Do you know what's wrong with your pouch?

Two months is a pretty short time to give up hope. Some of us struggle with many ongoing issues to keep a pouch. Only you know how much you can endure and if you feel life was better with an ostomy then only you can make that decision. I would, however,  suggest getting another opinion first as time and adjustment may help   Unfortunately some of us continue to need meds even with a pouch. 

I don't know that there is anything specifically wrong with the pouch.  But, I continue to suffer with horrible, painful spasms before each bowel movement (BM).  I am having 8-18 BM's per day.   Each trip to the bathroom can consume 30-45 minutes before I feel I can safely leave the bathroom.  And, sometimes I don't even get three steps out of the bathroom before another extremely painful spasm hits, forcing me back to the toilet.  The only way I have been able to get any sleep at night has been to quit eating by 3:00 p.m. everyday.  And, I still have to get up 2-5 times during the night at that.  I am taking 8 Lomotil per day, two servings of cholestyramine powder, and 2 codeine tablets per day.  In between trips to the bathroom, I have leakage problems.  Throughout the day and night, as I am having the extremely painful spasm gas attacks, I hold off going to the bathroom for as long as I can.  But, with the amount of pain, burning sensation, and extreme gas pressure associated with the spasms, it is impossible to hold off very long.  And, on many occasions, I've held off too long and ended up having accidents.  Up until the time I began to stop eating past 3:00 p.m., I was commonly making 12-20 trips to the bathroom everyday.  The ONLY thing that has helped me to reduce the number of trips has been not eating past 3:00 p.m.  I used to take 8 Imodium per day, but the doctor switched me over to lomotil when she prescribed the addition of the Codeine ( approximately 3 weeks ago.  I can't see where switching to Lomotil and adding the Codeine have help in any significant way.  My decision to stop eating past 3:00 p.m. has seemed to be what has made the biggest difference.  I have lost 40 lbs. and have very little energy.

Two and a half months is very early.  I was told to give it 18 months minimum.  I gave it around 26 months and was going through what you were going through still at 26 months.  So for me. The pouch was done. 

Give it more time.  More opinions.  Advice.. Your early in the process. 

Richard. 

MYSTICOBRA,

Wow, 26 months.  You're a lot stronger person than am I.  You certainly gave it your best shot.

I don't know how old you are.  I am 66 1/2 years old.  Life is short and I just don't want to spent half of what time I have left in this wonderful world in the bathroom and in pain.  I have already missed out on being able to go to my grandkid's birthday parties.  I was not able to join my wife, oldest son and his daughter when the traveled from Iowa to Seattle a few weeks ago to see my youngest son who works out there.  I have not seen him in over two years and I'm really disappointed that I couldn't go with them.

I will not make my final decision certainly until after my next follow up appointment with my doctor in mid-August and I may actually try to give this thing a full year (but, I doubt it).  I, like I'm sure most people are when they are relegated to an ileostomy, was very shocked and depressed.  However, once I got over the mental hurdle of having the ileostomy, I adapted very well to having it.  I could almost say, I conquered it!!.  There were very few things that I couldn't do that I had done prior to the emergency surgery to remove my colon (undiagnosed UC).  I had no pain and the only medication I was taking was 4-6 Imodium per day.  I had a lot of energy and spent a whole lot less time in the bathroom attending to the bag than I am currently in dealing with the problems associated with the jpouch.

At my age (and I realize 66 1/2 years old is not necessarily ancient), I just want to give myself the best opportunity possible to have the highest quality of life I can possibly have for the balance of my life here on earth.  I retired in June of 2015 after having the emergency surgery in September of 2014.  Needless to say, I really haven't had an opportunity to enjoy much of my retirement the way I had hoped to.  Having the ileostomy was just more simpler than dealing with the jpouch.  I fear of waiting too many more months in hopes of this all working out well will end up just being wasted time.  I know I'm not being extremely patient but something inside me just tells me that this situation is just not going to improve enough to make it worth it.

NoGut

• Emergency surgery (undiagnosed UC, mega gut) Sept 2014
• Jpouch surgery, January 2016
• Takedown, April 2016

Nogut, I had my jpouch four years and gave my decision to remove it a year, from "seriously considering it" to "let's do this." During that year, I grilled my surgeon about outcome, healing, any new treatments on the horizon, etc......but, like you, I already knew what I wanted to do, for similar reasons to yours. I think it's those reasons that steer us in a certain direction. Give it time to be absolutely sure but, like the grieving process, there's no "proper" time to wait to make your decision. When you know, you know. 

LAMBIEPIE,

I can't imagine putting up with all the problems for 4 years.  I admire the stamina of people like you.  I guess I am not that strong or patient.  I just don't want to miss out 'life' anymore than I have to.  I want to be able to be a big part of my children's, grandchildren's, and wife's lives and their special events as much as possible.  I don't want to miss them because I can't leave the house or venture too far from a bathroom.  I appreciate your comments......especially, "When you know, you know."  Are you pleased with your decision to abandon the jpouch?

To answer your last question, absolutely, unequivocally, yes! My stoma doesn't hold me back from anything and that was my reason for moving ahead with the surgery. i also needed to diminish my pain in some area of my life as I suffer from chronic migraine, too (I'm up at 4 a.m. for the fifth night in a row with one.) That's one area I don't have to worry about anymore. We all have our reasons. Mine became VERY clear.

I had my J-pouch final surgery over 8 months ago.  The first few months were awful and I wished I had not had it.  Each month it has gotten a little better. There are still things though but I am feeling quite well.  I am digesting better, I do go to the bathroom 8-10 times a day.  I can hold it if need be.  I eat healthy.  I usually stop eating around 7 pm.  I have been sleeping better finally and have slowly put on some weight.

Right now, I am glad I don't have a bag and things are improving.  I know someone who has had the J-pouch since 1999.  She does really well. " Hope". I had Home Health come in for awhile and their encouragement was huge.  Finding this group also was huge, I am not alone.  Calmoseptine is my friend.  

I would say play with your diet, see what helps with that.  Fiber. Probiotics!! I take daily.  I practice yoga, a powerful vinyasa flow, daily.  I just started to meditate.  

I finally feel like me.  Keep talking on here.  I wished for an ostomy bag for a long time.  Glad I stuck it out. 

My best to you.

I just recently went back to the ileostomy. I'm not gonna lie my mind is still in a bad place. I'm 24, a male, used to being in very good physical shape and now I have to worry about a bag for the rest of my life (most likely.) Good news however, no more stomach pain, immense cramping, and I'm not having butt burn every other day from the pure liquid stools. I suppose we just have to make the best of our crappy situation. 

RE5,

Are you familiar with the magazine, "The Phoenix"? You might want to google it.  It's the official magazine of the United Ostomy Association of America.  I believe it publishes about four additions per year.  I believe the cost is around $10.00 per issue.  You will find many inspirational articles in it regarding ostomates and how they are accomplishing great things.  Many of the individuals these articles pertain to have accomplished wonderful challenges physically.  It seems their ostomies limit them very little, if at all.  If you're not familiar with this magazine, it would be well worth your time to check it out.  It can be very motivational.  Having an ileostomy should not limit you much in regards to body building, hiking, swimming, running marathons, playing sports, etc.

Before assuming this is pouch failure, I'd consider a course of Cipro or Flagyl for pouchitis or bacterial overgrowth. While uncommon this soon, it is not unheard of. You'd know within a couple of days if it is useful. For me I had a huge improvement of symptoms within hours of my first dose of Flagyl.

Bowel slowers and diet modifications did nothing when I had pouchitis symptoms. Antibiotics were like a miracle.

Jan