Hi, I read your post with interest as I have a similar situation. My pouch went active in 2005 and things were ok initially. Then, about a year ago, started having problems with abscess/fistula, leaking, discomfort. Things got quite miserable, and I was hardly out the house except for work. Tried to avoid going back to loop ileo, but eventually decided I had to. It was done on 4th Feb. It has already brought alot of relief - less and quicker toilet visits, no pain or urgency, better sleep, more freedom to get out and about etc. In fact, I will be in a quandry about going back to try the pouch again, but I probably will when things heal up fully, and give it a final try. Like 6M$S, I'm going to try and enjoy the relief for a while, and then decide whether it will be worth going back to potential problems with the pouch.
Some people take to the ostomy very well, and I sometimes wish I could be more like that. For me it is a bit more of a mental battle - even though I know how much improvement it can bring.
I wish you and everyone else in a similar position well. I look forward to hear how you get on.

I am new to this group and need advise. I had ileoanal surgery 7 years ago with reveral 3 months after. For the past 7 years I have had cronic pouchitis and cuffitis. I go to the bathroom up to 100 times a day. I go up to 25 times at night. I have good days, but the majority of the time I am not good. I was on antibiotics for 5 years. It stoppped working. I tried AST trial, with 1 good day out of 5 weeks. I have tried a list of drugs, sometimes they might work for a short time, but mostly I get bad side effects. I am currently on diflucan, azulfazine, and Lomotil it helps a little. I seem to become immune to everything. I am thinking of getting perminant ileo. Need advise.

Kerianne,
Are you kidding me?!? 100x a day, and up 25x a night?!?

Get that god-awful thing ripped out of you body! I wasn't NEAR as bad off as you, and it was HELL!

I had mine ripped out this past 3/11, and I'm sleeping through the night, no more pain (well, a little pain because I'm still recovering), but overall, I feel like a million bucks!

The bag definitely needs some getting used to again for me, but whatever- I feel great! I haven't taken any narcotics for 3 days now! (that after taking norco 10's for 2.5 years straight!)

If you want to chat via IM, email, phone, please feel free to contact me anytime!

Go get your life back!!!

//Todd

ToddL,

Thank you for responding. Any advice you have regarding the surgery, would be great! I am going to see doctor May 23rd. I already told him I am seriously thinking of having surgery. I am tired of being sick and tired. I never know how I am going to feel. It is constantly changing. One minute good, the next bad. Overall, not good. I am just stressed wondering how I am going to be everyday. I live from toilet to toilet.

Did you try cutting out certain foods before surgery? I try to do that but the results are never consistant. I can drink water and it kills me and then I can have a peice of chocate cake or salsa and be fine. It is always changing from day to day and minute to minute. Never makes complet sense. And, I am always starving! I love food too! Are you able to eat everything now?

What is the hospitaziation time for the surgery? and the recovery time? Did they put the stoma in the same place as before? Did they completely take out your J pouch? How many times to you empty bag a day?
I have lots of questions. I want be fully prepared for this decision, and make sure that it is the correct one. I was not fully prepared or knowledgable before my first surgery and it was beyond hell for me. I am concerned about complications. Did you have any complications with this surgery? Do you have any back problems after the surgery? I had terrible back pain after first surgery and it completly went away after reconnection.

My husband is very apprehensive about me having surgery. He was not with me 7 years ago when I had surgeries and bag. So, this is all new to him and overwhelming. Do you have any advise?

Thank you so much for responding. I wish you well with your recovery. Please keep me informed on how you are doing.

Kerianne

Kerianne,
I'm going to PM you with my home# and cell- CALL me!

In response to your questions- I tried EVERYTHING,and like you, I NEVER got consistent results. I even had 1 day when I didn't have ANY urge to go for like 9 hours straight, but that was the ONLY time ever- it was VERY strange.

Not only am I eating everything now, but I'm able to drink beer again, I'm eating until right before I got to bed if I want to, and worry free.

I think the hospitalization time is supposed to be 5-7 days, but like a dummy, I left after 4. I'm still recovering, but it's pretty easy now. The absolute hardest part for me was the butt recovery- so many nerves down there, it was far more painful than any of the abdominal pain for me. The good news is that I did notice an improvement almost every day- frequent hot baths are GREAT!

They not only took my entire j-pouch, but everything else left over to do the connect, and now have a Ken-butt.

I got my stoma in the exact same location as where I had my temp- I wanted to put it much lower, but because of the shape of my belly, it would've been NOTHING but problems keeping the wafer attached.

Right now, I definitely emptying more than I need to, because I'm still getting used to everything, and am neurotic about it. It's getting a lot better as all the other aches and pains get better, and I get back to living again.

Surgery went about as well as could have- they booked the OR for I think 4-5 hours, and we were all done and out in 1.5 hours. (kind of scared my wife and mom when my surgeon went to greet them in the reception area after only 1.5 hours!)

Every complication I had from this one was self-induced:

1. Leaving the hospital too early- selling my surgeon that I was 100% ready.
2. Walking WAY too far WAY too early, and dehydrating myself.
3. Sitting on my butt ALL DAY 8 days after surgery to fly home to Austin from San Diego.
4. Going back to work too early.

I'm doing GREAT now, though- I just made it MUCH harder on myself than needed!

I had some back pain and neck pain, but that was from watching TV in awkward positions- not directly related to surgery.

I'm not going to kid you- this is another whopper of a surgery, but the end result can/will be well worth it! I feel 'normal' again, and am loving that part!

//Todd

Hi Kerianne,

I answered another of your posts today, too, but I wanted to add to Todd's experience. My reversal was a tough surgery - nearly 7 hours, but more than half of it spent with the docs removing adhesions. The recovery was rough and I had adrenal problems after the surgery. My perm. ileo was done last July and only in the past three weeks have I begun to feel like myself again, but I STILL think it was worth the suffering. My difficulties had very little to do with ostomy surgery, but many of us have complications because we've waited a long time to make the reversal decision and are often in a kind of weakened state. I have regained my life. I eat everything in sight, don't have to worry as much about eating early long before bedtime, and the butt part was nothing -almost no pain, no meds, just a Barbie butt, slick as can be. I'm very active, hiking, walking, gardening,snowshoeing, cooking, studying things that interest me in ways that include traveling and being with lots of other folks. I,too, had a life plotted out around the location of decent and readily accessible bathrooms, but no more. I wish I'd done it sooner! Please PM me if you want to talk. There is so much indecision around how you might get better if only....or how you won't so why not have another surgery....it's a very difficult decision, but many of us are delighted with our (resumed) quality of life.

Best,

Barbara