OK, when do I start to consider surgery? I've done it all since 2004 and by taking prednisone, asacol & azathiaprene I'm at a loss. My hair is falling out and every time I decrease the prednisone the flare ups begin.
so my question to my fellow UC peeps is when is surgery necesssary? how is the j-pouch? Does it work?
Reply posted for Butterfly53.
I agree this all sounds familiar, I just made a second appt for consulation with the surgeon so that my husband could be there. I am tired of being a cranky mom and wife because I just feel bad all of the time. There is a diary post on the forum by a gentlemen who just had the surgery. I found it very interesting and enlighting. I have exhausted all diet & meds and remicade is not an option. One suggestion someone made to me, was find another person who had the surgery that could be your support partner, especially on changing the or cleaning out the bag. I have a friend who said she would help me. Good luck to all on your decisions, I made mine, I just want to feel better again.
Reply posted for pkarasek.
Wow are stories sound so similar. I actually went and talked with a surgeon and a new GI doc yesterday. I too am at my wits end I just am so emotionally and physically drained I dont think I can take one more day of being sick. With that being said I had made up my mind to do the surgery before I went to the appointments, but after the appointments have decided to give one more medication, Remicade, a shot. If it doesnt work I am going to have the surgery. I am worried about the long term affects of all the meds I have been on, and I know surgery will be tough but in the long run it just seems so much better, at least from what people say. I hope you get some help and figure out what YOU want to do. Its not easy I understand completly!!!
Reply posted for Butterfly53.
Hi Amy: Thank you so much for responding. I don't know if I have exhausted everything but from my perspective I'm over it! I've heard a lot of good things about the surgery. My biggest fear is that it doesn't work for me. Right now I'm just having a terrible time deal with the fact that I'm losing my hair and then with the flare ups it's not much of a life! I'm young and single and it's very discouraging. I just want this to all end! Thank you for being supportive!
Paula
Reply posted for pkarasek.
Surgery should be considered when you have exhausted all other forms of treatment...that is what i did, i have suffered with UC for 7 years...My last resort was remicade...I thought that remicade was a sure thing for me..nothing else worked for me..i tried every drug out there that they gave me...imuran, prednisone, asacol, colzal..nothing worked..
I had the J-Pouch surgery last year Oct 1, 2007. had my iliostomy for 12 weeks and went back December 12, 2007 for the reversal...I will say i wish i knew somebody who prepared me for both surgeries but i didn't...It wasn't easy...getting adjusted to your iliostomy and changing your bag every 4 days wasn't easy in the beginning but after awhile it was second nature! it took me 4 days after surgery to realize that i was on the road to recovery!
I am very very very thankful that i got the surgery...I am doing wonderful! Your pouch grows too three times the size in a year...I can hold more stool and don't have to go the bathroom that often...I am on no medication for my J-pouch. I had one stricture but that was it..I still cannot eat some foods still but who cares! I don't have to worry about where all the bathrooms are in the mall anymore! I go out more with my children and husband.
I know you hear allot of horror stories about after they get the surgery but there are allot of success stories out there that the J-pouch worked for them and I am a success story!
If you decide to have the surgery, I will be there for you...You can ask me any questions you have...
Take care,
Amy
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