regrets?
Sun, February 26, 2012 9:12 PM
if you have had surgery do you have any regrets? I was on the surgery schedule in January but decided at the last minute not to go through with it. There was one more medication I had not tried. Well it doesn't seen to be working either so now I am thinking about surgery again.
I just don't know if I can have my life put on hold for 3 month to have 2 surgeries. But at the same time can I keep living being sick all the time? who knows...
phishgurlJoined Oct 13, 2010
Thu, March 22, 2012 5:06 PM
Reply posted for phishgurl.
Howdy-
I just went through the 3 surgeries for the J Pouch outcome. It can be a long road.....6 months of being in and out of the hospital, and living with a bag for a while.
I'm not out of the woods yet, but so far I can say I don't have any regrets. I really struggled with the bag initially. That got to me. But, but the end of the 4 months I had it.....I was pretty used to it. Bag changes started out to be a huge ordeal for me. by the end I was swapping those things out like band aids.
The surgeries went well, and I was up walking the same day. Pain wasn't too bad. I did have a complication after the second procedure that put me in the hospital for 5 days (the pouch was leaking). This is one of the acknowledged risks, and it wasn't fun. But I survived and now its just a blurry memory.
All said though, I didn't want to waste any more of my life trying medications or infusion therapies that didn't work. I was being moved from one thing to the next. I feel lucky that I had a surgical solution, and took it sooner rather than later. BUT...it wasn't easy. First I had to accept that I had been dealt a bad card by getting UC. Once you can accept that, then all the steps though surgery are pretty benign.
I'm still in a recovery mode right now, but I'm seeing the occasional promises coming true (a full nights sleep, a day with only 6 bowel movements, energy, vitality). I'm starting to feel like a human being and FUNCTION like a human being again, and I don't have to deal with any UC nonsense. So far so so good...
Randy
rtl331Joined May 25, 2011
Wed, February 29, 2012 11:44 AM
Reply posted for phishgurl.
I had UC and had the 2 stage surgery back in 2005 and have lived with a J pouch since that time.
I have to say that the time in between the 2 surgeries where I had an ileostomy was pretty awful. But you have to remember that it's temporary. One you get hooked back up with a J pouch you feel some semblance of normalcy.
I will tell you that you can develop pouchitis which is lousy in its own right. I actually developed chronic pouchitis for which I cycle antibiotics. It's pretty rough, but not anywhere near as bad as when I was dealing with raging UC.
The adjustment period after the surgery was difficult for about the first year. I didn't have the greatest continence (but better than with UC) and I would get immensely thirsty at times. You have to learn to make dietary adjustments, something you're probably already used to though.
That all being said, I don't have any regrets about the surgery. I see it like this, I have dealt with nearly all of the complications after the surgery including strictures and chronic pouchitis. But in a way it's liberating to know that my lame colon is out of me and my small bowel is approximated to something like normal (a relative term here). It sounds to me like medications aren't working for you like they weren't working for me, and if that's the case you might just want to get this over with. Because if you develop some serious complications from refractory IBD then you might need to lose it anyway and then it will be under less than ideal circumstances. I'm a doctor, and I can tell you that you'd MUCH rather get a surgery like this under planned circumstances for both psychologic and medical reasons.
Surgery is scary to be sure, but I find it far less scary than uncertainty.
kabonkongJoined Feb 29, 2012
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