- Joined
- Jul 18, 2010
- Messages
- 91
Been a long year. Back story, I was diagnosed with Crohn's at 26 when my appendix burst. That was 34 years ago. That diagnosis sure explained a whole lot about the previous 10 or so years. Had several surgeries, became a poster child for every med they ever came out with....some worked so so, some didn't work at all. I was in remission for several years until the fistula struck. And they struck with a vengance.
My first fistulotomy (ectomy, whatever you want to call it) left me with 28 holes in my bottom to heal. Yep, you read that right, 28. Looked like a bunch of land mines went off. If it wasn't so sad, it would have been funny. Ultimately over the next 6 years had 4 surgeries for that.
I moved to Cody, WY in July 2002 and got in touch with a wonderful GI up in Billings, MT. In 2004 I went to him just to start the relationship. He looked at my records, gave me a hug, and said "why in the hell aren't you on Remicade?" I said I didn't know and within 2 weeks I had my first infusion. It was godsend and I never looked back. I had my life back! I felt wonderful! I was winning the world again! I actually felt like going fishing again (which made my hubs very happy, he had his fishing partner back again)
Yep, you guessed it it started to not work. But I had a good run with it. In January of this year, my doc (now a new one as my old one retired) upped the dosage. That put my body into a tail spin. High fevers for days on end, feeling like crap (pardon the pun), severe fatigue,etc. My last (though I didn't know it at the time) infusion was 4/18/2014.
In May I ran an extremely high fever for several days and noticed a lump on my upper right thigh. It hurt so I kept heat on it. I guess that turned out to be a good thing as it was a HUGE abscess. Ended up putting me in the hospital for 4 days over that and missed over a month of work. Left me with a 5 " scar that is still trying to heal.
I finally got back into my GI and she put me on Humira. Been on it now about 2 mos. I'm having a hell of a time with it. It just doesn't seem to want to fully kick in. It seems to want to start working it just isn't as instantaeous as the Remicade was. She did say that if every other week didn't work, we would try weekly, and if that didn't work she had an arsenal of 3 other drugs to try.
The fistula are giving me fits, I can't sleep, I'm in pain, I'm fatigued....life is just really sucking right at the moment. Yet I have to get up 4 days a week (I work 4 10s) and go to work to dispense food stamps to those that just want to sit and complain to me how crappy their life is..... REALLY?!?!?!?! Let's talk, cupcake.
I've thought about disability, but by the time that got approved, I would have retired anyway. So I'm not going to pursue it. Plus I need to work to pay those annoying bills.
In this midst of all of this I turned 60. Not a bad age to be. With my background, I feel damn lucky to have gotten this far. Someone asked me the other day how I felt. I told them my new benchmark in the morning is....I do an assessment when I wake up...am I breathing? am I above dirt? If the answer to both of those questions is YES than it will be a good day. I really don't know how else to go about it. I could curl up in a corner and cry, or just carry on and do the best I can. That is what I'm choosing to do. But I have to tell you it is getting old. I was realtively symptom free for so many years that this truly sucks the life right out of my party!!!!
Anyway, thanks for listening group. You guys have been awesome over the years.
My first fistulotomy (ectomy, whatever you want to call it) left me with 28 holes in my bottom to heal. Yep, you read that right, 28. Looked like a bunch of land mines went off. If it wasn't so sad, it would have been funny. Ultimately over the next 6 years had 4 surgeries for that.
I moved to Cody, WY in July 2002 and got in touch with a wonderful GI up in Billings, MT. In 2004 I went to him just to start the relationship. He looked at my records, gave me a hug, and said "why in the hell aren't you on Remicade?" I said I didn't know and within 2 weeks I had my first infusion. It was godsend and I never looked back. I had my life back! I felt wonderful! I was winning the world again! I actually felt like going fishing again (which made my hubs very happy, he had his fishing partner back again)
Yep, you guessed it it started to not work. But I had a good run with it. In January of this year, my doc (now a new one as my old one retired) upped the dosage. That put my body into a tail spin. High fevers for days on end, feeling like crap (pardon the pun), severe fatigue,etc. My last (though I didn't know it at the time) infusion was 4/18/2014.
In May I ran an extremely high fever for several days and noticed a lump on my upper right thigh. It hurt so I kept heat on it. I guess that turned out to be a good thing as it was a HUGE abscess. Ended up putting me in the hospital for 4 days over that and missed over a month of work. Left me with a 5 " scar that is still trying to heal.
I finally got back into my GI and she put me on Humira. Been on it now about 2 mos. I'm having a hell of a time with it. It just doesn't seem to want to fully kick in. It seems to want to start working it just isn't as instantaeous as the Remicade was. She did say that if every other week didn't work, we would try weekly, and if that didn't work she had an arsenal of 3 other drugs to try.
The fistula are giving me fits, I can't sleep, I'm in pain, I'm fatigued....life is just really sucking right at the moment. Yet I have to get up 4 days a week (I work 4 10s) and go to work to dispense food stamps to those that just want to sit and complain to me how crappy their life is..... REALLY?!?!?!?! Let's talk, cupcake.
I've thought about disability, but by the time that got approved, I would have retired anyway. So I'm not going to pursue it. Plus I need to work to pay those annoying bills.
In this midst of all of this I turned 60. Not a bad age to be. With my background, I feel damn lucky to have gotten this far. Someone asked me the other day how I felt. I told them my new benchmark in the morning is....I do an assessment when I wake up...am I breathing? am I above dirt? If the answer to both of those questions is YES than it will be a good day. I really don't know how else to go about it. I could curl up in a corner and cry, or just carry on and do the best I can. That is what I'm choosing to do. But I have to tell you it is getting old. I was realtively symptom free for so many years that this truly sucks the life right out of my party!!!!
Anyway, thanks for listening group. You guys have been awesome over the years.
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