Hi everyone 
I'm PGHCrohnsGirl and I'm a 29 year old living in Pittsburgh, pursuing my BA in Psychology & Women's Studies and learning how to adjust to the transition of a life with Crohn's. One of the things that I have yet to do was to join any sort of support groups - online or IRL - for people with IBD or Crohn's, so, here I am.
I was diagnosed in 2009 and have not had an easy journey, though, mine has been easier than many others I have read about. An excruciatingly painful day in the ER led to a CT scan that indicated I had inflammation in my terminal ileum that was indicative of Chron's, so, the ER docs wanted me to go to a GI for a follow-up. One GI didn't believe I truly had Crohn's, but, I found another GI who decided to run a few more tests (small bowel series, colonoscopy, etc.) to determine if I did or not. And, well, I'm sure you can all guess what my final diagnosis was considering I'm registered on this board :ytongue:
After diagnosing me, my doctor put me on two different mesalamine meds only to discover that 1) I was allergic to one of them, Apriso (yippy?) and 2) that the other one, Pentasa, didn't even absorb into my system properly to maintain therapeutic levels. All those little white beads inside of the Pentasa capsules? Yea, those would go right through me. I felt like complete garbage all of the time. I lost a ton of weight (I went from 170 to 135), I barely had the energy to do any of the things I normally wanted to do. I slept a lot - usually passing out on the couch or in bed for hours at a time when trying to do simple things like read for school or watch television, and I would often have to take many breaks doing something as easy as dust my bedroom - and I could barely eat. I remember my mom saying often that she didn't have any idea it would get this bad this quickly.
After about a year of hoping and praying the Pentasa and all of the other supplements I tried would start working - yea, I waited a year...I had no health insurance and was scared of the next steps of treatment possibilities, lame reasons, I know - I decided to throw in the towel and go back to my GI for a new approach. He decided to put me onto prednisone to see if that would help alleviate my symptoms. He started me off at 40MG a day for two weeks and then told me to call him and tell him how I felt.
I felt FANTASTIC. I had my energy back, I could eat again, I was able to do everything I wanted to do. He told me to start tapering it down 5mg a week and to call him immediately if any of my symptoms came back. All of the time I kept hoping that the prednisone would kick it into remission.
I managed to get all the way down to 20mg a day before my symptoms came back. Devastated, I called my doctor. He told me to go back to the dose where I still felt OK (25mg) and to stay on that until I could get on Humira. 6 months of prednisone was torture. I could barely sleep, I had trouble trying to concentrate on school, the mood swings drove me nuts, the acne and the moon face - oh, the acne and the moon face - it was all just awful for me.
6 months after starting prednisone, I finally got to start Humira and, once we knew it was helping, I got to taper down and eliminate prednisone from my treatment plan. I'm coming up on the one-year mark of being on Humira and, so far so good. Although there is a slight possibility that I may have to switch to taking it weekly rather than fortnightly as I find myself feeling pretty damn awful by the time I hit the in between week, but, I'll have to wait till my next GI appointment.
I'm PGHCrohnsGirl and I'm a 29 year old living in Pittsburgh, pursuing my BA in Psychology & Women's Studies and learning how to adjust to the transition of a life with Crohn's. One of the things that I have yet to do was to join any sort of support groups - online or IRL - for people with IBD or Crohn's, so, here I am.
I was diagnosed in 2009 and have not had an easy journey, though, mine has been easier than many others I have read about. An excruciatingly painful day in the ER led to a CT scan that indicated I had inflammation in my terminal ileum that was indicative of Chron's, so, the ER docs wanted me to go to a GI for a follow-up. One GI didn't believe I truly had Crohn's, but, I found another GI who decided to run a few more tests (small bowel series, colonoscopy, etc.) to determine if I did or not. And, well, I'm sure you can all guess what my final diagnosis was considering I'm registered on this board :ytongue:
After diagnosing me, my doctor put me on two different mesalamine meds only to discover that 1) I was allergic to one of them, Apriso (yippy?) and 2) that the other one, Pentasa, didn't even absorb into my system properly to maintain therapeutic levels. All those little white beads inside of the Pentasa capsules? Yea, those would go right through me. I felt like complete garbage all of the time. I lost a ton of weight (I went from 170 to 135), I barely had the energy to do any of the things I normally wanted to do. I slept a lot - usually passing out on the couch or in bed for hours at a time when trying to do simple things like read for school or watch television, and I would often have to take many breaks doing something as easy as dust my bedroom - and I could barely eat. I remember my mom saying often that she didn't have any idea it would get this bad this quickly.
After about a year of hoping and praying the Pentasa and all of the other supplements I tried would start working - yea, I waited a year...I had no health insurance and was scared of the next steps of treatment possibilities, lame reasons, I know - I decided to throw in the towel and go back to my GI for a new approach. He decided to put me onto prednisone to see if that would help alleviate my symptoms. He started me off at 40MG a day for two weeks and then told me to call him and tell him how I felt.
I felt FANTASTIC. I had my energy back, I could eat again, I was able to do everything I wanted to do. He told me to start tapering it down 5mg a week and to call him immediately if any of my symptoms came back. All of the time I kept hoping that the prednisone would kick it into remission.
I managed to get all the way down to 20mg a day before my symptoms came back. Devastated, I called my doctor. He told me to go back to the dose where I still felt OK (25mg) and to stay on that until I could get on Humira. 6 months of prednisone was torture. I could barely sleep, I had trouble trying to concentrate on school, the mood swings drove me nuts, the acne and the moon face - oh, the acne and the moon face - it was all just awful for me.
6 months after starting prednisone, I finally got to start Humira and, once we knew it was helping, I got to taper down and eliminate prednisone from my treatment plan. I'm coming up on the one-year mark of being on Humira and, so far so good. Although there is a slight possibility that I may have to switch to taking it weekly rather than fortnightly as I find myself feeling pretty damn awful by the time I hit the in between week, but, I'll have to wait till my next GI appointment.
