Well, I have a rave to share with you: I'm 11 weeks past IRA 1-step, and last week I was able to complete a work project. My job is quite unusual: I'm an orchestra conductor, and what I did was, I conducted a series of 7 shows at a musical theater in a city about 90 miles south from here. It was truly great being on stage again, at times it almost felt like I was starting a new life.

Metamucil (one powder bag 30 minutes before each show) helped a lot, as well as some utilities worked into my underpants just for the emergency case (which didn't occur).

Everything was fine as far as the shows went. But then, the trips home after the shows (between 11pm and 1am) were quite atrocious- stopping at every rest place on the way was hardly enough. And now I'm back home for recovery, and suddenly I find that things are getting back to worse- way over 10 bms, problems at night, sudden urges whenever I eat anything, bburns etc.

So, I try to think of the good times on stage, while at the same time doubting if there will ever be a way for me to live and work more or less "normally" (I'm 35 now), without utilities hidden, without panicking about 1 1/2 hour night rides, being able to sit and chat with my colleagues before and after shows and just living a normal life.

I know 11 weeks isn't enough time, but sometimes I fail to see any improvement since day 1, except for my medication stategies, that don't really always work either. Where is this going to lead me?

Thanks for listening,

Alex
Hamburg, Germany

Alex,
I'm sorry you're discouraged. Its very easy for that to happen. You said it yourself though, you're only 11 weeks post op and that isn't very long for your body to adjust to its alternative plumbing situation. I think you'll find that what you eat (and drink) and when has a bigger impact on when and how often you go then it used to.

There are many posts on what foods (generally) thicken and slow the bowels. Though of course not everyone is the same! Also if you haven't tried immodium or metamucil products you might consider that.

I don't know much about IRA as I have a j-pouch myself but you might consider giving your surgeon's office a ring if things are getting worse intead of better.

I hope things DO get better soon. Good luck!

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katie

I agree with everyone above. I only saw improvement month to month with these surgeries. It is not a day by day type of recovery. It takes a lot of time and energy to recover. I remember feeling all sorts of pains and issues I was worried about but it was just normal recovery. Katie is right, there are so many posts on what to eat to help but remember everyone is so different. Hang in there and it gets better and better - for me it was a month to month improvemnt. I wish you the best.

Thank you all very much for your replies- of course you're right, I need more time, although sometimes the "why me"-question comes up, especially in the evenings.

I'm doing Metamucil powder (the wafers are not available here ) and Loperamide, but I'm still experimenting on applying them the best way.

Of course we will never be "normal" again. But I hope and pray that someday soon things will be "normal" enough to work properly, without pain or urge issues all the time, being able to go out in the evenings, maybe even at dome point drinking my beloved cappucino in the morning again.

I'm not asking for being completely normal again, just for participating in the world again.

Alex

Take Heart!

Things will get better. They say it takes about a full year for your body to get fully adjusted to the j-pouch and I would imagine that the stats are similar for an IRA. That doesn't mean its going to be a year of hell It just means its going to take some time to adjust.

I've had my j-pouch since I was a kid. I made it through high school and college, did quite a lot of road trips (hours and hours between rest stops) and did just fine. I ate whatever I wanted and I'm sure you can imagine in college ist not exactly fine cuisine for a while I even had Dr Pepper at 8am and Cappucino at 10pm
Probably keeping a food/bathroom diary would help. Its a pain, yes but it might help.

You'll be back on stage in no time!

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katie

Hi Alex, I'm sorry you're feeling that way.
I looked at your profile and saw your disease is UC, is your rectum completely disease free? How much do you have left?

I've IRA too, tomorrow it's 6 weeks since surgery and I'm not doing good, I have UC and I think my rectum is swelling up again, it's been bleeding and hurting, it's sucks!

Thank you all for your wonderful encouragement, sometimes I surely need someone telling me that things will be better, eventually.

I suppose the "why me"-question is not so unusual among people with j-pouches and IRAs. Yet, thinking about it for more than just a second I can come up with a huge number of things to be thankful for- abilities, opportunities, experiences, that were so good that I didn't feel I deserved them either. These things just tend to fall off my head when things are bad.

Sunnsla: I have about an inch of my rectum left, and so far there has been no further inflammation. But I was told to have an eye on it.

Here in Germany the doctors keep telling you that after your operation your UC is "cured". Although things are not always easy at the moment, I hope and pray that I will never run into any kind of inflammation issues on that part again (my dad died of colon cancer 10 years ago, I hope that won't happen to me, now after the colon is gone).

Greetings,

Alex