- Joined
- Nov 23, 2011
- Messages
- 23
living with chron's
Hi everyone! Before I start, I just had to say how impressed I am with this forum and how exciting it is for me to have found such a supportive, open and wonderful community. It sucks that we ll have a nasty disease in common, but it's great to hear other people's experiences and know that I'm not alone.
So, it all began in 1995 when I was 12. Typical symptoms such as weight loss, diarrhea, loss of appetite, wicked stomach pains, cold soars. I was being treated for "stomach flu" for a few months till I had an appointment with a Gastro. and scheduled a colonoscopy. The days leading up to the procedure were the most terrifying of my life...("you're going to stick a camera WHERE?!"). Stayed in the hospital for a week, NG tube and lots of steroids. Made lists of food to eat after the NG came out I was so hungry.
Between ages 12-18 I was on all kinds of medications, I was often flaring but had some breaks of short remission. Being a teenager was bad enough, having to explain moon face in high school was a nightmare. Being thin from all the weight loss was a minor consolation.
Finally, when I was 18 I moved out and after a short hospitalization (I was on Purinethal and my white blood cell count was dangerously low) I had my first whole year of remission! It was very exciting but didn't last.
After that I started remicade, which worked for a few years until I started getting really violent reactions to it, couldn't breath, heating up, very unpleasant stuff. So I started Humira, which worked decently for a year and then stopped working. I think I tried Tysabri after that, which was a little scary with the whole risk for PLM and all that but it worked until I moved back to Israel and it's not approved here. So I tried 3 drug studies since then, something probiotic (?), Millenium, and a new targeted release Purinethal, all of them being complete wastes of time and energy.
The past four years have been the hardest. No energy, constant pain, having to get up a million times during the night to go explode in the bathroom, not even one milisecond of remission. The only thing that really helped with the pain was medical marijuana which worked like a charm, but had other drawbacks (like jealous friends).
I have taken every conventional drug on the market (I left out before pentasa, rafasal, flagyl, cyrpro, Imuran, methotrexate- the nurse who administered this shot would tell me every week that she's injecting me with poison and why don't I try just changing my diet instead, budesone and prednisone numerous times), tried acupuncture, reflexology, meditating, various diets and whatnot. Oh, and I forgot the countless useless hospitalizations which achieved nothing.
I've never had surgery since the inflammation is too spread out (I've begged my Doc to consider it the past few years but always got a very definite NO). At the moment I'm waiting for the next drug study to come out, my doctors have nothing to offer that I haven't tried. And also because of a nasty incident with steroids (psychosis followed by two years of clinical depression) I can't use those for emergencies any more (pretty happy about steroids never being an option again).
I'm so underweight and malnourished, that my doc's suggested I try TPN. I have a PIC line which I connect to a bag of "food" every day for 16 hours, and eat very little to get some colon rest. I have gained at least 16 lb in less than a month which makes me ecstatic!!!! I'm starting to feel like a real person again
Still have pains, but I'm much more energetic and HAPPIER
A little worried about what's going to be next, I feel like if this doesn't help the inflammation go down I'm screwed...
Wow! this is really long, and I feel like it's not even the half of it... but it feels good to get it all out...
thank you for your patience if you've read till here
Hi everyone! Before I start, I just had to say how impressed I am with this forum and how exciting it is for me to have found such a supportive, open and wonderful community. It sucks that we ll have a nasty disease in common, but it's great to hear other people's experiences and know that I'm not alone.
So, it all began in 1995 when I was 12. Typical symptoms such as weight loss, diarrhea, loss of appetite, wicked stomach pains, cold soars. I was being treated for "stomach flu" for a few months till I had an appointment with a Gastro. and scheduled a colonoscopy. The days leading up to the procedure were the most terrifying of my life...("you're going to stick a camera WHERE?!"). Stayed in the hospital for a week, NG tube and lots of steroids. Made lists of food to eat after the NG came out I was so hungry.
Between ages 12-18 I was on all kinds of medications, I was often flaring but had some breaks of short remission. Being a teenager was bad enough, having to explain moon face in high school was a nightmare. Being thin from all the weight loss was a minor consolation.
Finally, when I was 18 I moved out and after a short hospitalization (I was on Purinethal and my white blood cell count was dangerously low) I had my first whole year of remission! It was very exciting but didn't last.
After that I started remicade, which worked for a few years until I started getting really violent reactions to it, couldn't breath, heating up, very unpleasant stuff. So I started Humira, which worked decently for a year and then stopped working. I think I tried Tysabri after that, which was a little scary with the whole risk for PLM and all that but it worked until I moved back to Israel and it's not approved here. So I tried 3 drug studies since then, something probiotic (?), Millenium, and a new targeted release Purinethal, all of them being complete wastes of time and energy.
The past four years have been the hardest. No energy, constant pain, having to get up a million times during the night to go explode in the bathroom, not even one milisecond of remission. The only thing that really helped with the pain was medical marijuana which worked like a charm, but had other drawbacks (like jealous friends).
I have taken every conventional drug on the market (I left out before pentasa, rafasal, flagyl, cyrpro, Imuran, methotrexate- the nurse who administered this shot would tell me every week that she's injecting me with poison and why don't I try just changing my diet instead, budesone and prednisone numerous times), tried acupuncture, reflexology, meditating, various diets and whatnot. Oh, and I forgot the countless useless hospitalizations which achieved nothing.
I've never had surgery since the inflammation is too spread out (I've begged my Doc to consider it the past few years but always got a very definite NO). At the moment I'm waiting for the next drug study to come out, my doctors have nothing to offer that I haven't tried. And also because of a nasty incident with steroids (psychosis followed by two years of clinical depression) I can't use those for emergencies any more (pretty happy about steroids never being an option again).
I'm so underweight and malnourished, that my doc's suggested I try TPN. I have a PIC line which I connect to a bag of "food" every day for 16 hours, and eat very little to get some colon rest. I have gained at least 16 lb in less than a month which makes me ecstatic!!!! I'm starting to feel like a real person again
Still have pains, but I'm much more energetic and HAPPIER A little worried about what's going to be next, I feel like if this doesn't help the inflammation go down I'm screwed...
Wow! this is really long, and I feel like it's not even the half of it... but it feels good to get it all out...
thank you for your patience if you've read till here
