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.
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.
