- Joined
- Mar 2, 2011
- Messages
- 51
Hello everyone, my name is Dana and I have Crohn's. Here is my unfolding story.
I was diagnosed with crohn's 15 years ago at the age of 21. My only symptom was diarrhea. I woke up one day with it and it wouldn't go away. I started seeing a primary care doctor and they finally referred me to a GI. 6 months later I had my diagnoses. He put me on asacol, but it didn't help with the diarrhea at all so I stopped taking it. For the next 5 years I didn't take any medications at all. I still only had diarrhea. In October of 2001 I had my first flare up of Crohn's. I honestly didn't even know that's what it was. I started seeing my gyneologist bc I thought somehting was wrong with my female parts. I was having fever, had excruiting pain in my LRQ and abdominal area, nausea, I couldn't eat anything and lost 20lbs in that first month. My GYN finally did laprascopic surgery on me and discovered the culprit. They said it looked like my intestines had been turned inside out. I was put in the hospital for 5 days. On IV antibiotics, steroids, and pain meds. After that hospital stay I went on Pentasa. After awhile the Pentasa was making my joints hurt so bad I stopped taking it as well. I went another 4 years, not taking care of myself, and I would go off and on the Pentasa when I thought it was flaring. In 2005, 2 months after I had my second child I was hospitalized again for a bad flare. Mostly the same meds, but I now had a narrowing area to be concerned with. It was also during this flare I developed a recto-vag fistula. I was in the hospital for 8 days this go around. I left the hospital on prednisone, started 6 MP, and was put on remicade. The remicade worked and closed the fistula up for a time, it seems to open and close at will. I was on remicade for about 2 years and decided I wanted to try Humira instead, for the convenience. That ended up being a bad idea. Humira didn't work for me and I ended up in the hospital again in 2009, for 11 days this time. This was the scariest for me because I was seeing a surgeon the whole time who was anxious to get in there and cut my guts out. Thanks goodness my GI dr was there with me and supported my decision to try and calm it down with meds. This time around I was on TPN, steroids, antibiotics and the works. It was one of the hardest hospital stays to date. I left the hospital again, on entocort this time, and started back up with the remicade. I have not been the same since. I've been fighting off flares off and on consistently since 2009. The remicade worked great at first, but I feel like it may not be working as well anymore. So all this leads me up to today, 2011. I was in the hospital 2 weeks ago for 8 days. I had a thickening in my usual area and an internal fistula from large to small bowel to add to the mix, they said the recto-vag was closed up but it's not, as I still have the lovely symptoms of it. I'm still doing remicade (moved it up to 4 weeks this time) and I'm on prednisone 40mg per day. This has been my worst flare to date. I can't seem to shake it. I've had good days and bad days (today is a bad day). I woke up with fever and abdominal pain and bloating, kind of feel like I've been ran over by a truck. Crohn's is really starting to affect my life, now more than ever. I'm missing more work than I ever have, it's just so unpredictable. I do feel like I'm one of the lucky ones though at least I still have all my guts. Wow, I feel like I rambled on and on. Sorry about that ;-) I'm happy to be here and be able to share with you all. Thanks for reading my story.
I was diagnosed with crohn's 15 years ago at the age of 21. My only symptom was diarrhea. I woke up one day with it and it wouldn't go away. I started seeing a primary care doctor and they finally referred me to a GI. 6 months later I had my diagnoses. He put me on asacol, but it didn't help with the diarrhea at all so I stopped taking it. For the next 5 years I didn't take any medications at all. I still only had diarrhea. In October of 2001 I had my first flare up of Crohn's. I honestly didn't even know that's what it was. I started seeing my gyneologist bc I thought somehting was wrong with my female parts. I was having fever, had excruiting pain in my LRQ and abdominal area, nausea, I couldn't eat anything and lost 20lbs in that first month. My GYN finally did laprascopic surgery on me and discovered the culprit. They said it looked like my intestines had been turned inside out. I was put in the hospital for 5 days. On IV antibiotics, steroids, and pain meds. After that hospital stay I went on Pentasa. After awhile the Pentasa was making my joints hurt so bad I stopped taking it as well. I went another 4 years, not taking care of myself, and I would go off and on the Pentasa when I thought it was flaring. In 2005, 2 months after I had my second child I was hospitalized again for a bad flare. Mostly the same meds, but I now had a narrowing area to be concerned with. It was also during this flare I developed a recto-vag fistula. I was in the hospital for 8 days this go around. I left the hospital on prednisone, started 6 MP, and was put on remicade. The remicade worked and closed the fistula up for a time, it seems to open and close at will. I was on remicade for about 2 years and decided I wanted to try Humira instead, for the convenience. That ended up being a bad idea. Humira didn't work for me and I ended up in the hospital again in 2009, for 11 days this time. This was the scariest for me because I was seeing a surgeon the whole time who was anxious to get in there and cut my guts out. Thanks goodness my GI dr was there with me and supported my decision to try and calm it down with meds. This time around I was on TPN, steroids, antibiotics and the works. It was one of the hardest hospital stays to date. I left the hospital again, on entocort this time, and started back up with the remicade. I have not been the same since. I've been fighting off flares off and on consistently since 2009. The remicade worked great at first, but I feel like it may not be working as well anymore. So all this leads me up to today, 2011. I was in the hospital 2 weeks ago for 8 days. I had a thickening in my usual area and an internal fistula from large to small bowel to add to the mix, they said the recto-vag was closed up but it's not, as I still have the lovely symptoms of it. I'm still doing remicade (moved it up to 4 weeks this time) and I'm on prednisone 40mg per day. This has been my worst flare to date. I can't seem to shake it. I've had good days and bad days (today is a bad day). I woke up with fever and abdominal pain and bloating, kind of feel like I've been ran over by a truck. Crohn's is really starting to affect my life, now more than ever. I'm missing more work than I ever have, it's just so unpredictable. I do feel like I'm one of the lucky ones though at least I still have all my guts. Wow, I feel like I rambled on and on. Sorry about that ;-) I'm happy to be here and be able to share with you all. Thanks for reading my story.
