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I suffered from bad colitis for almost 9 years. I tried all the meds you could try, all the diets, and anything else that we do to try and feel good. Once the Remicade quit working my Dr referred me to The Cleveland Clinic to talk surgery. At 27 years old made the decision to have it done. Dr Herman Kessler of CC performed the removal of my colon on Nov. 4th, 2014. He told me my colon was ready to perforate at anytime so it was good we got it out of there. Since then, I can't remember the last time I have felt this good, I feel like I have my life back. Yeah, the bag is a pain in the butt, but I've gotten used to it. My 2nd surgery is scheduled for next week, February 26th. I've been anxious to get this over with, because all I've really heard is I will have my life back and be normal again. But I have to admit, and I mean no disrespect to anyone when I say this. But some of the stories and posts I've read on here have me kind of scared. Every where else I have looked has been fairly positive. On here I have read about a lot of complications, and problems that people have had for up to 20+ years with a pouch. And to all of you I hope you can figure it out and be healthy like all of us want to be. So with that being said, is it worth it to just keep the bag? I feel great now, and it's starting to seem like people have more bad with the pouch than they do good. Sorry this is long winded. It's hard to talk about this with people that don't really understand. So I guess I'm just looking for some people have had good experiences and have gotten back to active, and athletics that they did before. I'm an active person, and that's all I want to be again. Thanks for reading and wish me luck!
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I do have to add that there is still so much I don't know. I did a bit of research, but at the same time I was sick and tired of being sick and tired. I just discovered this site tonight and haven't been able to quit reading. I wish I would have found it sooner. Good or not so good, thank you everyone who is sharing your stories. I'm pulling for all of you. Everyone here is pretty much going through the same thing, and knowing I'm not the only one and there are people to talk to is literally bringing a tear to my eye right now, I'm scared and excited all at the same time for this whole journey. I probably should get off here and try to get some sleep. Best wishes to everyone and I'm looking forward to sharing and learning with all of you.

Welcome to the site Jeff_James,

 

I understand your apprehension.  You've had major surgery after years of hell.  Around 90-95% of j-pouchers don't have long-term problems. They don't usually join on-line support groups. I have a dysfunctional pouch but it is still functioning better than my colon was before I kicked it out of my body. If you don't have the takedown surgery you will always wonder what if.

 

Hopefully you will be in the 90-95%.  I can almost guarantee that you will have further questions, especially after your surgery so ask us for suggestions and guidance.  

Take Care  

I had a j-pouch for 30 years before high grade dysplasia made its removal necessary.  Although I had frequency problems, some incontinence and butt burn, I was able to adapt and lead a quite normal life.  During this time, I held a full time and a part time job, participated in equestrian competitions, skied the big slopes out West (once with President Ford after he left office) and traveled internationally.  You should be able to do the activities you enjoy after recovering from surgery.  Although you are feeling good with the bag, the odds are strongly in your favor for having good results with a j-pouch.  Personally, I would go for it.  TE Marie’s comments about who is posting on this board are right on base and do come back with any questions and concerns you have following surgery.  I wish you the best!

Bill

I think the main thing to keep in mind is that you should not compare your results to how things were before you had UC. There are NO options that can restore things to how they were when you did not have bowel disease and a carefree life. Each option has some sort of trade-off, with some level of inconvenience or change in your lifestyle. You can get your life back, even if it is not exactly the same.

 

That said, for most of us, they are acceptable trade-offs. I had my j-pouch surgery nearly 20 years ago and have not had to alter my life to a great degree. I still was able to camp, swim, hike, raise my kids, go for long drives, travel internationally, and eat a widely varied diet. Yes, I still have health issues. Some of them are not related to bowel disease, some are. Such is life. I find joy in every day and am grateful for the surgery that made for a great life.

 

Jan

Last edited by Jan Dollar

Jeff

 

i agree with what Jan has already said although I'm only in my 6 th year with the pouch. My experience generally is in keeping with hers. The only thing I would add which hasn't been mentioned is that should the pouch fail eventually you can go back to the bag.

 

I would suggest the pouch is generally worth a try but each of us has to make the decision we can live with regardless how it ultimately turns out. 

 

I trust you will find your answer and I'm sure we all wish you the best of luck and will be watching your progress. 

 

Best Wishes!

Lew

Thank you guys very much, I really do appreciate it. It's nice talking with people that know what I'm going through. My wife tries, and she has been a saint through all this. But she just doesn't get it get it ya know? Go in for surgery 2 tomorrow. Can't believe its here already. Thanks again for the encouragement! Hope everyone is having a good day and staying warm! That's impossible here.

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