It has come to that point where i have to make a choice of living with constant hospital stays and pain, it has been voiced by my Gi doctor and my Colorectol surgeon whom i very much trust i have been with him for 14 years and has done my other 2 surguries, for those that have had a permanent colostomy for some time and those who have just started how is life living with the permanent bag this is a huge decision and cannot be reversed any input would be very much appreciated
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I'm assuming you have a jpouch that is giving you trouble? I'm not sure what your problems are but if you are unable to get them solved then, yes, life with a permanent ostomy would be better then life as you are living it. All of those that have given up their pouch for an ostomy are happy with the results.
I think quality of life should be paramount; I know it would be for me. If my jpouch were to become problematic I would go back to an ostomy.
Sue
I think quality of life should be paramount; I know it would be for me. If my jpouch were to become problematic I would go back to an ostomy.
Sue
I can see how this would be a big decision but if you are frequently in pain, in and out of the hospital, etc. that is also very, very difficult. You have been through so much so perhaps it would be helpful to remind yourself that you know how to be patient, and determined and strong and gentle with yourself. Whatever you decide will be the RIGHT decision for you. You will be able to find a good quality of life. Trust yourself!!
Savannah
Savannah
I understand as I have been wrestling with the same issue except mine are blockages, a RV fistula, chronic pouchitis and 12 bathroom trips a day. I had a bag before for 4 years and it wasn't that bad, biggest problem public perception.
Maybe you need to see another GI and/or surgeon with more experience for a second opinion. It sounds like this decision is weighing heavy on you and I think getting another opinion would assure you that you have tried everything you needed to make your j-pouch work. You might also want to consider a K or BCIR pouch. There is a forum on them below. I don't know if your pouch is salvageable to convert to one or those or not.
Take care.
Take care.
I've had my bag for 2-1/2 years and am considering a pouch of some sort -- not decided yet.
While you'd never choose to get a bag -- I mean, who would choose to do that? -- I must say it's not that hard to live with. I was near death from UC, had an emergency colectomy, finally sorted out the Lyme problem and I've never felt better. I'm active and athletic, as fit as I've ever been and feel great.
It took a little while to figure out how to use the bag -- I'm sure everyone comes up with their little tricks -- and I haven't had any problems for quite a while. I even invented a little device to help bag changing and if I ever get off my lazy butt I'll share it with people.
Once upon a time I was pretty certain I'd go for a j-pouch but I'm not so sure now. The only real [perceived] problem I have is intimacy. I'm single and haven't had a girlfriend since getting the bag and not sure how I'll deal with it if/when the time comes. Cross that bridge when I get to it I guess.
While you'd never choose to get a bag -- I mean, who would choose to do that? -- I must say it's not that hard to live with. I was near death from UC, had an emergency colectomy, finally sorted out the Lyme problem and I've never felt better. I'm active and athletic, as fit as I've ever been and feel great.
It took a little while to figure out how to use the bag -- I'm sure everyone comes up with their little tricks -- and I haven't had any problems for quite a while. I even invented a little device to help bag changing and if I ever get off my lazy butt I'll share it with people.
Once upon a time I was pretty certain I'd go for a j-pouch but I'm not so sure now. The only real [perceived] problem I have is intimacy. I'm single and haven't had a girlfriend since getting the bag and not sure how I'll deal with it if/when the time comes. Cross that bridge when I get to it I guess.
Had UC for 21 years, had a j-pouch for 2 1/2 years, had my j-pouch disconnected and permanent ileostomy 4 years ago...finally got my health and life back.
I have an ostomy also and I can do whatever, whenever and where ever I want! I can possibly get it reversed but I have had it for 9 years now and why rock the boat. I think about life with a flat belly and no bag but then I always think why fix what's not broken. Good luck with your decision.
quote:It has come to that point where i have to make a choice of living with constant hospital stays and pain,
Seems like you answered your own question. If the ostomoy gets you out of continual pain and hospital stays it would seem silly not to go in that direction. I gave up my pouch at about 18 months and my issues (primarily incontinence with butt burn) while affectinhg the quality of life sound much less severe than yours. The end ileo has been far better for me than the J and I basically do anything I want to do. Why suffer?
I had my j pouch removed 7 weeks ago. It was a tough process but I am doing very well now! I have to deal with my new appliance which can be a pain but at least it is on my terms. Can't say the same for the 7 years I lived with chronic pouchitis. My favorite thing is sleeping all night long now! I used to get up sooo much every night. You will know when you get to the point that you want to live your life, I did and now I can : ) best of luck!
Karen
Karen
quote:quote:
I too am facing the decision to J or not to J. I have had the bag for 22 months without any problems other than severe pain from time to time with the rectal stump. This is about to be removed, but with it also will be my chances of having a J pouch. The stoma and bag have served me extremely well and I am concerned that by attempting the J Pouch will introduce a whole new series of problems and issues. The decision not to J I understand would be final. I really am struggling with the decision.
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