Peace... to all of you dealing with IBS or Crohn's... comforting each other with the comforts you each have found. Here's my story.
I'll be 40 this year... I was 36 when I started having abdominal pains and losing weight like crazy. Turns out my iritis I had earlier in the year was a precursor to Crohn's... but I just didn't know it at the time. I switched doctors, after a few months of losing weight, to someone who would listen to my story rather than just toss Zelnorm at me which didn't seem to do anything. I got so weak that I would just come home from work, eat 1 or 2 bites of something and then lay on the couch moaning. Nothing provided any relief.
After a few tests, a few scares and pounds later I was finally diagnosed with Crohn's. I lost 50lbs in all in a few months time. One of the scares early on was a huge mass my new doc found... turned out to be a bunch of hard poop blocking the way. That's when I found out I also had a stricture forming.
Side note... Two days before my diagnosis, we found out that our 10 month old had life threatening food allergies (dairy, egg, and peanut). I cried more about that than I did about Crohn's. I knew nothing about Crohn's but couldn't bear to think that my son would never enjoy ice cream.
Turns out his food allergies and my Crohn's actually helped us bond even more because we both had to learn to keep away from certain foods. Our lives got flipped upside down that week. But we're surviving... and my son has outgrown the peanut allergy...so now we just have to watch out for dairy and eggs...
Ok..back to my story. After my colonoscopy and the diagnosis of Crohn's I was told to have a "low residue" diet for a while. At one point I even drank pot roast through a straw. So I started Pentasa and Entocort (and I'm still on those two). This seemed to do the trick for me.. but still had flare ups during stressful times which required Prednisone to settle down.
The stricture got worse and I finally had an Iliocolic (sp?) resection (and he tossed in the apendectomy for free) in Oct. 08. I thought I'd be done with the symptoms for a while.. but not long afterwards while trying to taper off the Entocort I started having pains again. I'm actually ok during the day,...it's just that I can't sleep more than 5 or 6 hours without waking up to bad pains in my gut and back. After a hot shower and a few bowel movements it starts to let up.. I'm guessing it's a flare up that just gets worse as I sleep and when my bowels wake up in the morning, it hits me like a ton of bricks. If anyone has any clue on this I'm open for suggestions.
My doc put me on Imuran a few weeks ago but I don't like this stuff. I've had some weird tingly things going on in my feet and hands.. and muscle spasms in my back. I was hoping it would help with the gut and back pains I was having in the morning... but so far nothing. My wife (an RN) is really nervous about the whole "immune system suppression thing"... I'm not quite ready to kick it up a notch to Remicade or Humira.... but I also don't want to have surgery again for a while (or ever!).
Ok.. that's it. Thanks for reading. I'm sure many of you have experienced worse and my heart goes out to you. Thankfully I've been able to keep my job and my family through all this. My greatest comfort (besides a blast of Prednisone) is to sit at the piano and sing worship songs to God, my Creator and Sustainer. He made me who I am (pains and all), and I believe He'll get me through this. He may not heal me, though I still pray for healing.. but I know He's with me and comforts me.
Peace,
MusicMan
I'll be 40 this year... I was 36 when I started having abdominal pains and losing weight like crazy. Turns out my iritis I had earlier in the year was a precursor to Crohn's... but I just didn't know it at the time. I switched doctors, after a few months of losing weight, to someone who would listen to my story rather than just toss Zelnorm at me which didn't seem to do anything. I got so weak that I would just come home from work, eat 1 or 2 bites of something and then lay on the couch moaning. Nothing provided any relief.
After a few tests, a few scares and pounds later I was finally diagnosed with Crohn's. I lost 50lbs in all in a few months time. One of the scares early on was a huge mass my new doc found... turned out to be a bunch of hard poop blocking the way. That's when I found out I also had a stricture forming.
Side note... Two days before my diagnosis, we found out that our 10 month old had life threatening food allergies (dairy, egg, and peanut). I cried more about that than I did about Crohn's. I knew nothing about Crohn's but couldn't bear to think that my son would never enjoy ice cream.
Turns out his food allergies and my Crohn's actually helped us bond even more because we both had to learn to keep away from certain foods. Our lives got flipped upside down that week. But we're surviving... and my son has outgrown the peanut allergy...so now we just have to watch out for dairy and eggs... Ok..back to my story. After my colonoscopy and the diagnosis of Crohn's I was told to have a "low residue" diet for a while. At one point I even drank pot roast through a straw. So I started Pentasa and Entocort (and I'm still on those two). This seemed to do the trick for me.. but still had flare ups during stressful times which required Prednisone to settle down.
The stricture got worse and I finally had an Iliocolic (sp?) resection (and he tossed in the apendectomy for free) in Oct. 08. I thought I'd be done with the symptoms for a while.. but not long afterwards while trying to taper off the Entocort I started having pains again. I'm actually ok during the day,...it's just that I can't sleep more than 5 or 6 hours without waking up to bad pains in my gut and back. After a hot shower and a few bowel movements it starts to let up.. I'm guessing it's a flare up that just gets worse as I sleep and when my bowels wake up in the morning, it hits me like a ton of bricks. If anyone has any clue on this I'm open for suggestions.
My doc put me on Imuran a few weeks ago but I don't like this stuff. I've had some weird tingly things going on in my feet and hands.. and muscle spasms in my back. I was hoping it would help with the gut and back pains I was having in the morning... but so far nothing. My wife (an RN) is really nervous about the whole "immune system suppression thing"... I'm not quite ready to kick it up a notch to Remicade or Humira.... but I also don't want to have surgery again for a while (or ever!).
Ok.. that's it. Thanks for reading. I'm sure many of you have experienced worse and my heart goes out to you. Thankfully I've been able to keep my job and my family through all this. My greatest comfort (besides a blast of Prednisone) is to sit at the piano and sing worship songs to God, my Creator and Sustainer. He made me who I am (pains and all), and I believe He'll get me through this. He may not heal me, though I still pray for healing.. but I know He's with me and comforts me.
Peace,
MusicMan
