- Joined
- Aug 16, 2009
- Messages
- 124
Hello everyone! Another person affected by Crohn's. I was told I had it in september of 2008, but had been having a bout with it for a while- I procrastinated about getting medical attention to figure out what was wrong, and as you might guess, that made the situation worse.
I've actually never had a colonoscopy done, which as I understand is the best way for official diagnosis. I was diagnosed through ultrasound, upper and lower GI, ct scan, and blood work. I was put on a cocktail of medications after a trip to the ER before I was diagnosed, which included a 10 day course of prednisone and about a month's worth of sulfasalazine. The prednisone made me feel better, but only briefly. I then spiraled down quickly, dropping weight like crazy, and was eating next to nothing because it hurt so badly when I did eat, not to mention I would often have horrible vomiting spells. I had to take medical leave from work, and my family, being so concerned for my health, asked me to move home, which I did.
To complicated matters, I don't have any health insurance- but thankfully, we have a clinic here that will treat people who otherwise can't afford it. It's not always the best, but I don't know where I'd be without it. I'm in the process for filing for a new health insurance that was recently made available. I previously applied for medicaid, but was denied. They stated that they had no evidence that my condition would last for 12 months or longer, and that is the reason for my denial. How they can say a chronic, incurable condition such as Crohn's won't last for 12 months is beyond me. But I'm managing ok at the moment.
After being diagnosed, I was put on Pentasa an Entocort- it helped a little, but not much. Then they changed me from Entocort to Prednisone. I was on varying doses of prednisone, and remained on the Pentasa. After changing my dose of prednisone around, I was left on 40mg a day for 6 weeks, I believe, and then they attempted to bring me off, even though it was clear I was not in remission. I then started having more severe symptoms again, so they bumped me back up to 40mg. I recently started seeing a new GI doc that I really like. He prescribed Imuran, which I have been on since June (started on 50mg for about a month, then bumped up to 100mg). Had blood work done today to make sure I'm still doing ok on the Imuran, and I am, so he'll be bumping my dose of Imuran one more time to 150mg, and then I'll be coming off the prednisone. I also recently came off Pentasa.
I'm doing much better than I was this time last year, but I'm still not completely symptom free- I mostly experience cramping/gas/bloating right now. Oh, I also developed lactose intolerance.
After starting the Imuran, I began having back/side pain, and we checked to make sure it wasn't pancreatitis (it isn't, hooray). I have no idea what causes this pain, other than the possibility of gas. It does sometimes help to take an anti-gas medication, but it only helps for 30 minutes or so, and then it returns. I seem to be having this pain more often than my usual abdomen cramping that I know is my crohn's. So I'm a bit in the dark on this new pain. The prednisone has also taken it's toll on me (having been on it for so long), but I haven't had nearly as many side effects as most people seem to, so for this, I am grateful. I have the moon face and some acne (although I didn't have the best skin before), and I think that it also gives me some anxiety, although I don't feel anxious that I'm aware of, but I notice that I started biting my nails or biting skin on my lips, strange things like that. I don't really have mood swings or anything like that, but I do feel depressed a lot lately, and I feel pretty lethargic most of the time.
I'm hoping that the Imuran continues to work out ok and that I can come off the prednisone. We'll see where it goes from there!
But as we all know- we are more than our illness. My interests include reading, writing, watching tv and movies (I love cartoons), crafts, origami, journaling, cuddling our cats, video games, dancing, singing, biking, eating (when and what I can eat, that is), trying new foods (a risky business sometimes, considering- haha), cooking, and other things I'm sure I'm forgetting. My ultimate goal is to be able to enjoy life as much as possible. I want to return to school- thinking of first getting credentials for becoming a drug and alcohol counselor, and perhaps continuing with a major in psychology. But who knows. I know I'd like to help people in some form, whether it be helping them regain control of their lives through something like therapy and counseling, or helping people make happy memories in their lives by doing something like wedding planning or some such. I also still hope to meet someone special one day and get married, and then have a family- I'm very interested in adopting children, though, instead of the traditional means.
I hope not to let Crohn's keep me down!
Sorry this post is so long, everyone! I had more to say that I thought- haha. Kudos to anyone who actually read the whole thing!
I've actually never had a colonoscopy done, which as I understand is the best way for official diagnosis. I was diagnosed through ultrasound, upper and lower GI, ct scan, and blood work. I was put on a cocktail of medications after a trip to the ER before I was diagnosed, which included a 10 day course of prednisone and about a month's worth of sulfasalazine. The prednisone made me feel better, but only briefly. I then spiraled down quickly, dropping weight like crazy, and was eating next to nothing because it hurt so badly when I did eat, not to mention I would often have horrible vomiting spells. I had to take medical leave from work, and my family, being so concerned for my health, asked me to move home, which I did.
To complicated matters, I don't have any health insurance- but thankfully, we have a clinic here that will treat people who otherwise can't afford it. It's not always the best, but I don't know where I'd be without it. I'm in the process for filing for a new health insurance that was recently made available. I previously applied for medicaid, but was denied. They stated that they had no evidence that my condition would last for 12 months or longer, and that is the reason for my denial. How they can say a chronic, incurable condition such as Crohn's won't last for 12 months is beyond me. But I'm managing ok at the moment.
After being diagnosed, I was put on Pentasa an Entocort- it helped a little, but not much. Then they changed me from Entocort to Prednisone. I was on varying doses of prednisone, and remained on the Pentasa. After changing my dose of prednisone around, I was left on 40mg a day for 6 weeks, I believe, and then they attempted to bring me off, even though it was clear I was not in remission. I then started having more severe symptoms again, so they bumped me back up to 40mg. I recently started seeing a new GI doc that I really like. He prescribed Imuran, which I have been on since June (started on 50mg for about a month, then bumped up to 100mg). Had blood work done today to make sure I'm still doing ok on the Imuran, and I am, so he'll be bumping my dose of Imuran one more time to 150mg, and then I'll be coming off the prednisone. I also recently came off Pentasa.
I'm doing much better than I was this time last year, but I'm still not completely symptom free- I mostly experience cramping/gas/bloating right now. Oh, I also developed lactose intolerance.
After starting the Imuran, I began having back/side pain, and we checked to make sure it wasn't pancreatitis (it isn't, hooray). I have no idea what causes this pain, other than the possibility of gas. It does sometimes help to take an anti-gas medication, but it only helps for 30 minutes or so, and then it returns. I seem to be having this pain more often than my usual abdomen cramping that I know is my crohn's. So I'm a bit in the dark on this new pain. The prednisone has also taken it's toll on me (having been on it for so long), but I haven't had nearly as many side effects as most people seem to, so for this, I am grateful. I have the moon face and some acne (although I didn't have the best skin before), and I think that it also gives me some anxiety, although I don't feel anxious that I'm aware of, but I notice that I started biting my nails or biting skin on my lips, strange things like that. I don't really have mood swings or anything like that, but I do feel depressed a lot lately, and I feel pretty lethargic most of the time.
I'm hoping that the Imuran continues to work out ok and that I can come off the prednisone. We'll see where it goes from there!
But as we all know- we are more than our illness. My interests include reading, writing, watching tv and movies (I love cartoons), crafts, origami, journaling, cuddling our cats, video games, dancing, singing, biking, eating (when and what I can eat, that is), trying new foods (a risky business sometimes, considering- haha), cooking, and other things I'm sure I'm forgetting. My ultimate goal is to be able to enjoy life as much as possible. I want to return to school- thinking of first getting credentials for becoming a drug and alcohol counselor, and perhaps continuing with a major in psychology. But who knows. I know I'd like to help people in some form, whether it be helping them regain control of their lives through something like therapy and counseling, or helping people make happy memories in their lives by doing something like wedding planning or some such. I also still hope to meet someone special one day and get married, and then have a family- I'm very interested in adopting children, though, instead of the traditional means.
I hope not to let Crohn's keep me down!
Sorry this post is so long, everyone! I had more to say that I thought- haha. Kudos to anyone who actually read the whole thing!
