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First time poster, long time sufferer

Hello all,
Oddly I only just today found this forum and though I'd stop in and say hey.

Crohn's / IBD patient for about 16 years and either due to good docs, meds, diet change or whatever, it remains fairly mild. No surgeries to this point and scopes only every few years.

For many years I was on just plain ol' sulfasalizine and Levsin. Eventually I was switched to Asacol plus Nulev. (Next gen of Levsin). And just within the past few months I was switched to Pentasa.

My diet changed considerably by eliminating things like red meats, coffee, carbonated drinks, etc. The standard stuff. I lay off the dairy as much as possible, but at times still dip into the ice cream from time to time. Had to cut out a few fruits as well, including bananas. That one probably hurt the worst (in both ways). Anyone else not able to eat bananas? Even my doc scratches his head about that one, but we've proven that they sit pretty near the top of the "bad list".

With meds, diet and all else, I do still have the standard flare ups that I just have to suffer through. Usually lasting about a week. I call it one week on, two / three weeks off. It just goes in waves. Sometimes the flare is just annoying. Growly in the bowely and just feeling run down. Sometimes however, it's downright painful as most here probably are well familiar with.

After a ct scan once during a particularly bad flare, I had an ER doc classify things as "looking really angry" and that's a term I use regularly now. If I feel things start leaning towards the "angry" end, I know I'm in trouble.

I've found a small solution however and my doc seems to back it up. If things start really getting painful I've found that if I take a valium (5mg) before going to bed, the next morning things are much better.

After 16 years though, the worst ever in my time with this disease occurred only this past week and I hope it isn't a signal of some sort.
One week ago from the time of this post, things were getting "angry" and this time the valium did nothing to help. After a ct scan and xrays in the ER, it was determined that everything had clenched shut so tightly that it caused a blockage well along in the small bowel. Nothing was getting through, not even water.
This prompted two days of heavy steroids and an ng tube inserted for 23 hours. Quite possibly the most uncomfortable I've ever been. "Oh, you'll eventually get used to it and it won't hurt as much." No. No ah ah. I came close to pulling the thing out myself quite a few times.
After four days in the hospital working my way back up to solid foods I'm home and back at work. The whole area is still pretty painful, though I suppose mostly due to how tightly cramped everything was. It should begin to feel better soon I hope.

I have a problem now however that everything I eat causes nervousness. I know I didn't eat anything that triggered the flare in the first place, but who knows... I know that I need to just relax and get back into my diet, but I'm finding it more difficult than I thought. I never thought I'd be downright afraid to eat. ::sigh::

Anyway, that's my story. If you made it this far, thanks for reading. Looking forward to contributing anything I can.
Hi mkhopper:

Welcome to the forum! It's hard to go from feeling relatively well to finding yourself in the hospital with a blockage. Blockages are a pain on so many levels!! I hate when nurses and doctors tell me that something will be all right, or that I'll get used to the pain/discomfort, and I'm thinking "the hell I will."

After a bad flare, I usually have the same reaction as you around foods. I'm always anxious that I'll eat something that will trigger another flare, and with the last one so fresh in my mind, I want to avoid the flare 'sensations' for as long as I can!

My suggestion would be to start with those that are your "absolute safest food" and to keep on a really low fibre diet to start. This will allow your colon to rest a little while longer and to introduce your system to other foods more gradually. I find that a low residue diet really helps to get my colon reactivated in a slow, calm way.

I hope things go back to being 'mild' for you for a long time!
We xhave a few things in common it seems. I was without any problems most of my adult life. Was diagnose with cd at 13 and started habving problems only around 33 years old. I'm 37 now. I was pig headed though about my problems and never went to see the doctor, I thought after my three operation 2 bags and then remving the bag I was free of everything.

I too now live with occasional flare ups. You saying things getting angry fits the bill perfectly, It does feel that way.

Right now I am mediacated. I hope things will look up for you. don't give up.


Hi mkhopper
and welcome

I really empathise! Last year I was blocked too and in hospital for a week, it frightened me to death! I started on high doses of Pred, which I'd never even heard of, and gradually over 10 months I got better, but that horrible feeling of 'will it come back' took a long time to fade!
And here I am, one year later, and the thought never crosses my mind now, what will be will be!
You'll get there too, just relax, take it slowly, don't go mad with the food, and in time the anxieties will reduce.
lotsa luv
Joan xxx