Hey! I've been a member for a little bit, but mostly just reading other people's stories until now, but decided to finally share my story 
Sorry about any fuzzy details, but being diagnosed so young makes things a little hard to remember!
I'm currently 18 years old, a senior in high school, ready to graduate and go to The Ohio State University, and then go on to medical school!
Anyways! Not sure what age I started having symptoms, but I was diagnosed with Crohn's Disease when I was 9. Before then, I had been having stomach pain, diarrhea, most likely blood in my stools, and not really any weight loss, just I had always been really skinny and was never able to put on weight.
I saw my pediatric doctor, and eventually was referred to Children's Medical Center to see a pediatric GI, because my hospital did not have one at the time. He did some exams, bloodwork, and suspected I had Crohn's. He did a colonoscopy and endoscopy, and it was officially Crohn's. Not sure what all areas were (and still are) affected, but I seem to remember my doc saying that I had problems everywhere along my digestive tract.
I was immediately put on a lot of meds, including pentasa, 6mp, and steroids as well. At the time, I couldn't swallow pills, so it was... a challenge at first lol. Things eventually got under control, and I gained some weight from the steroids, which was good.
I eventually started remicade, and did that for a few years. Meanwhile, my GI moved, but at that time my regular hospital got a pediatric GI, so it was good timing. Due to the interaction of remicade and 6mp causing a high risk for cancer, my doc took me off remicade. I stopped the remicade and was in remission for 2 years, then had a bad flare, about 2 years ago. Had another colonoscopy and endoscopy and my doc said things looked pretty bad (not sure what areas are affected though lol). He put my on 60 mg prednisone for like a month before tapering (this was over the summer), and let's just say I had no self control over eating lol. I gained sooooo much weight by the time I was off the steroids. Coming off the steroids, I went right back to how I felt before, so I managed to lose the almost 50 pounds I gained. My doc started me back on remicade, but it never worked. He upped the dose, increased frequency, and tried to make it work but I had become resistant to it.
I had another bad flare, and got to the point I couldn't eat anything, and barely could make myself drink water, because I had sores all over my mouth and throat. My doc put me on 40 mg steroids and started me on Humira, this was in September, and I had never gotten out of my flare from the year before. The steroids did their magic and I felt wonderful and gained some weight, but coming off them went right back to before. Doc put me back on 40 mg, and coming off them felt bad again, so also started methotrexate, beginning of January. Waited a few weeks, but was still having diarrhea and extreme nausea so couldn't eat anything, so doubled my nexium (for acid reflux and extreme esophogial inflammation from last endoscopy) and put on 40 mg steroids again. Once I get a hold of my doc this week, I'll start tapering off the steroids again.
Luckily, I've never had any surgeries, but I'm pretty much out of options. Tried and failed pentasa, 6mp, and remicade. Humira doesn't seem to be working, and we've given it plenty of time. Never had any benefits from cipro, and flagyll actually makes me feel worse. Good news is the nexium works for acid reflux, didn't take it a few days and definitely regretted it! Methotrexate is what we're waiting on now. Once I'm down to 20 or 15 mg steroids I usually start feeling bad again, so if I make it past there and still feel well, then that means the methotrexate is working
If not, it will be interesting. My doc says he doesn't really have any more ideas, and if it gets to that point he's going to refer me to the adult GI, and probably even send me an hour away to a specialty place in Cincinnati or Columbus.
So, at this point it's a big waiting game for me! Methotrexate, will you work for me or not?
Well, that's my story! Like I said, no surgery is definitely good, but never feeling great for 2 years has not been much fun either! I've seen a few people take Imuran and Cimzia, but my doc never mentions those... Not sure if he just doesn't know them or if they're so similar to previous meds I've had that they likely won't work? Any ideas what else I might try in the future?
I feel like I wrote so much here lol but thanks for reading!
Sorry about any fuzzy details, but being diagnosed so young makes things a little hard to remember!
I'm currently 18 years old, a senior in high school, ready to graduate and go to The Ohio State University, and then go on to medical school!
Anyways! Not sure what age I started having symptoms, but I was diagnosed with Crohn's Disease when I was 9. Before then, I had been having stomach pain, diarrhea, most likely blood in my stools, and not really any weight loss, just I had always been really skinny and was never able to put on weight.
I saw my pediatric doctor, and eventually was referred to Children's Medical Center to see a pediatric GI, because my hospital did not have one at the time. He did some exams, bloodwork, and suspected I had Crohn's. He did a colonoscopy and endoscopy, and it was officially Crohn's. Not sure what all areas were (and still are) affected, but I seem to remember my doc saying that I had problems everywhere along my digestive tract.
I was immediately put on a lot of meds, including pentasa, 6mp, and steroids as well. At the time, I couldn't swallow pills, so it was... a challenge at first lol. Things eventually got under control, and I gained some weight from the steroids, which was good.
I eventually started remicade, and did that for a few years. Meanwhile, my GI moved, but at that time my regular hospital got a pediatric GI, so it was good timing. Due to the interaction of remicade and 6mp causing a high risk for cancer, my doc took me off remicade. I stopped the remicade and was in remission for 2 years, then had a bad flare, about 2 years ago. Had another colonoscopy and endoscopy and my doc said things looked pretty bad (not sure what areas are affected though lol). He put my on 60 mg prednisone for like a month before tapering (this was over the summer), and let's just say I had no self control over eating lol. I gained sooooo much weight by the time I was off the steroids. Coming off the steroids, I went right back to how I felt before, so I managed to lose the almost 50 pounds I gained. My doc started me back on remicade, but it never worked. He upped the dose, increased frequency, and tried to make it work but I had become resistant to it.
I had another bad flare, and got to the point I couldn't eat anything, and barely could make myself drink water, because I had sores all over my mouth and throat. My doc put me on 40 mg steroids and started me on Humira, this was in September, and I had never gotten out of my flare from the year before. The steroids did their magic and I felt wonderful and gained some weight, but coming off them went right back to before. Doc put me back on 40 mg, and coming off them felt bad again, so also started methotrexate, beginning of January. Waited a few weeks, but was still having diarrhea and extreme nausea so couldn't eat anything, so doubled my nexium (for acid reflux and extreme esophogial inflammation from last endoscopy) and put on 40 mg steroids again. Once I get a hold of my doc this week, I'll start tapering off the steroids again.
Luckily, I've never had any surgeries, but I'm pretty much out of options. Tried and failed pentasa, 6mp, and remicade. Humira doesn't seem to be working, and we've given it plenty of time. Never had any benefits from cipro, and flagyll actually makes me feel worse. Good news is the nexium works for acid reflux, didn't take it a few days and definitely regretted it! Methotrexate is what we're waiting on now. Once I'm down to 20 or 15 mg steroids I usually start feeling bad again, so if I make it past there and still feel well, then that means the methotrexate is working
If not, it will be interesting. My doc says he doesn't really have any more ideas, and if it gets to that point he's going to refer me to the adult GI, and probably even send me an hour away to a specialty place in Cincinnati or Columbus.
So, at this point it's a big waiting game for me! Methotrexate, will you work for me or not?
Well, that's my story! Like I said, no surgery is definitely good, but never feeling great for 2 years has not been much fun either! I've seen a few people take Imuran and Cimzia, but my doc never mentions those... Not sure if he just doesn't know them or if they're so similar to previous meds I've had that they likely won't work? Any ideas what else I might try in the future?
I feel like I wrote so much here lol but thanks for reading!
