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Posted 3/3/2010 10:00 PM (GMT 0)
Sue, how long do you have to be off the prednisone to be a candidate for 1 step -- just curious, for me that boat has already sailed ;-)

I was on Pred for two years, but had been off of it for more than two years when I consulted with the surgeon. I don't think with him that would have made a difference though, I got the impression that one step wasn't an option with him at all. He's also pretty hard line about not doing take down any sooner than 12 weeks either. I am having such a hard time with the temp ileo I was pretty much begging. He told me "you get one chance" and he waits till at least 12 weeks, end of discussion.
Posted 3/3/2010 10:18 PM (GMT 0)
Meesh,

I don't know but I would guess at least a year but if the pred use was long term it might be longer. Some surgeons just aren't comfortable doing 1 steps for anyone and they choose not to. Some surgeons wait 3 months before reversal; some do reversal in 6 weeks. I don't know why there are such differences but every surgeon seems to have his/her preferred methods. My surgeon does reversals in 6 weeks. I had to wait 8 weeks due his vacation schedule! I was not happy as I had lots of awful skin issues with my ostomy and I swore that my skin would never recover (it did).

Hang in there, 12 weeks will go by quickly even though I know the pain you are in!

Sue
Posted 3/3/2010 10:22 PM (GMT 0)

Meesh said...
Just a reminder, if you haven't had the surgery, no matter how tempting it is, DO NOT take Immodium when you have a flare (or at all actually). Taking Immodium when you have UC or CD can lead to Toxic Megacolon and then you won't have to make any decision to have the surgery, because you'll end up in the ER and when you wake up, you won't have your colon anymore.
Meesh

Just a reminder, we all don't react the same, lol. Without immodium or Lomitil, I would not have been able to get out and go to work, and trips.... etc.. over the years. I only take it when flaring, otherwise I don't need it.
Posted 3/3/2010 11:28 PM (GMT 0)
Sorry -- my GI was so adamant about it (even when I had a long flight I had to go on) that I guess I assumed it was off limits for all.

Meesh
Posted 3/4/2010 12:02 PM (GMT 0)
I was thinking about this more last night and realized I ate a lot of Triscuts yesterday... could it be them? I know I should limit how many of them I have, because they're high in fiber, but I really like them. Maybe I should cut them from my diet after all....
Posted 3/4/2010 12:28 PM (GMT 0)

Meesh said...
Sorry -- my GI was so adamant about it (even when I had a long flight I had to go on) that I guess I assumed it was off limits for all.

Meesh


My GI told me I could take them occasionally
Posted 3/4/2010 1:51 PM (GMT 0)
Oh, this makes me sad... Neferet, it's not the food you ate that caused the loss of control. It's the disease. Please don't think that triscuits caused this. My heart goes out to you; this used to be a common problem for me and I really do understand the humiliation and the fear over each episode.

Sue
Posted 3/5/2010 1:24 PM (GMT 0)
Thank you everyone for your input. I'm thinking I need to learn more about UC and I'm glad I stumbled across this forum the other day. You've all been very helpful. I think I've been a bit in denial about how much UC is going to affect my life, and this has served as a pretty good wake up call. I'm going to start being more active about my treatment and learn more about this thing.
Posted 3/5/2010 2:27 PM (GMT 0)
I can relate to the feeling of not being able to hold it in,after having colitis for 24 years without a major flare[When i originally got colitis i was very sick,lost 45lbs,in hospital 28 days-prednisone cured me back in 1985] i found out how tough this disease can be on us physically and mentally.I had been flaring for a couple of months last may-june when i was going to work[i work with a contractor doing residential work-mostly interior work] when not knowing that i was at a point where i wouldn't be able to hold it in.I was half way there[30 minute drive]when i got the urge,a bad urge,i stoped at a gas station and as soon as i got out of my car i was not able to hold it in.I had two more accidents where the dam burst[sorry but i have to joke about it or i go nuts],but know with the proper meds,6mp,pred,apriso,rowasa,it seems that i am getting back to normal.The anxiety that comes with this disease is tough,my family went away 3 times last summer i was only able to go 1 time because of my flares.Each vacation trip was approx a 2 to 3 hour trip,the one i did go on wasn't fun.But thankfully this disease can go in remission,which i hope i'm headed for now-GOOD LUCK
Posted 3/10/2010 7:40 PM (GMT 0)
I had this problem for the longest time, and I finally attributed it to the Asacol. Once I quit taking it, this rarely happened to me. I discovered that I just cannot take it, nor can I take Pentasa, or anything like it. It just made my symptoms worse and frankly, I just got dang sick and tired of pooping my pants all the time! I figure if its not making the situation any better and is only making it harder to live with, why bother.

Now I only take Imuran, and am using Rowasa enemas as needed to clear up the last little bit of a flare.

Good luck to you!

Gingerdog


-------------
42 years old
UC for 26 years (Pancolitis)
Posted 3/10/2010 8:08 PM (GMT 0)
Most of us all have pooped our pants.  I don't know if you saw my thread earlier this week but I had an accident at a casino in Las Vegas last week.  I had to leave my boxers in the bathroom and sneak up to my room that I just checked out of.  It's never a pleasant situation and you always feel utter humiliation. 

My dr prescribed me Symax for my urgency and it has worked for me.

Posted 3/10/2010 8:14 PM (GMT 0)
Neferet-if you do decide on surgery somewhere down the road, dont let the thought that you may end up with a bag keep you from trying for a jpouch. I see alot of people who wont go for jpouch surgery because they are afraid they will end up with a bag!
As for the accidents, when i had UC, i took immodium like crazy, 5 a day, at least towards the end, it was the only way i could do anything, and honestly, i was hoping for toxic megacolon so i wouldnt have to choose surgery, even though, logically, i knew i wanted to do that.
I thinnk though, that my GI told me not to take more than 4 a day, or he also gave me a prescription something that i could take 3 of a day.
I did find when i had UC that different foods would cause me more problems, and make me have to go more often with more urgency. I got lucky and only had two accidents, one at home and one at the hosptial. However had i ever had one in public i would have went for surgery that minute probably, lol.
Like someone said, i would get up about two hours before i had to go anywhere, and i would eat two hours before i had to go anywhere, i would be very careful to not eat or drink anything when i was out.
good luck!
Posted 3/10/2010 8:15 PM (GMT 0)
Oh and i chugged pepto bismol like crazy, a bottle in a few days.
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