- Joined
- Dec 13, 2010
- Messages
- 5
Hello
I have dealt with crohn's disease for five+ years. I have joined this board not so much to ask questions about the disease and treatments, but more to get back into a support group of some sort.
I have been having a very rough time with pain and plenty of other symptoms that are common for me in flare ups. Very bad joint pain. In two months I lost twenty pounds and I have managed to keep myself level between 100 and 105 lbs (been here since October), but I'm having a difficult time gaining it back. I drink Boost daily and am also on prednisone for trial treatment (I'll get to that in a moment). I've had experience with pred in the past and it was.. not fun. When I was told I would be put on it again a few weeks ago I cried. Right there in front of the doctor. My appetite has shown a little bit of improvement (as in I actually eat), but the pain that accompanies eating and the nausea has not improved whatsoever. I am on an 8 week dosage of pred, starting at 40 mg and decreasing 5 mg every week.
Anyway. I have a lot of severe joint problems, primarily in my hips, knees, and most recently the joints connecting my ribs to my sternum have become swollen and making breathing painful. I'm on hydrocodone to suppress the pain. However, because of this heavy pain med, I cannot drive. I am a commuter student in college. I live at home, so for the last couple of weeks my parents (both of whom work at the college I attend) have been giving me rides.
That's the most recent about everything.. now I'll go back a little bit.
I was diagnosed with crohn's when I was 13 and fresh out of junior high. Dealt with it through high school, found I have IBS along with it (of course), learned my diet and by the time I graduated high school (I was just barely able to with how much school I ended up missing) I was just about in remission. I spent my first year of college doing extremely well, albeit the joint pain that comes in the winter (northern midwest winters are brutal) and getting every single bug that was going around thanks to a comprised immune system. Other than that though, crohn's was under control.
This last summer I went camping with my family for a large family reunion in northern California and by the end of the camping trip I noticed my appetite beginning to decrease rapidly and I began having those darned stomach pains.
Now my insurance, just a few months before this camping trip, realized (a good 8 months after my birthday) that I was no longer a ped patient, so I was to no longer see the pediatric specialists 100 miles away who had diagnosed me. I was really really pleased with this because I was ready to move on in life and not have to deal with them any more. I met my new local adult GI, things were good.
Skip ahead a couple of months... after the camping trip, I went to my previously (and conveniently) scheduled 3 month follow-up appointment with my GI. He ran some tests, did an upper endoscopy, referred me back to the specialists, said I had serious disease in my duodenum that probably goes further into my small intestine.
Now, I never saw the pictures.
I went to the specialists (adult this time, not peds) and they did a colonoscopy (but not an upper endoscopy, even though they hadn't seen the pictures yet). They were confused because the previous ped specialists said I only had mild disease, yet this local doctor said I had serious disease. They found nothing in my colon. Though during the scope, I was so sick and throwing up my blood pressure was so low that the couldn't fully sedate me, so I was partially awake during the scope, enough for me to respond to any pain. Apparently I was yelling at certain points, like in the rectal area and in other various places where I have been having pain. Yet there was nothing to be seen. Not even in the biopsies.
They did an MRE (new and similar to an MRI, I looked it up, pretty interesting). I couldn't drink all of the barium because the nausea got to be too much. They couldn't give me the medication to stop my small intestine from moving so they could get a super clear picture because that med makes you nauseous and I was already swallowing barium vomit. So the results from that were unconclusive. Showed no distention or dilation anywhere in the small intestine. It did however show that I have a full colon, which was kind of odd because I barely eat and go at least twice a day. They say I probably have dead nerve endings or scar tissue that doesn't work properly and so that slows down the movement in my colon, thus backing me up. So I have been on laxatives for over a month now and that helped some pain, but has done nothing for the nausea/upper stomach pain.
I wish they would just do another upper endoscopy. But before they do that, they want to try me on pred for 8 weeks. I cried when they told me this because last time I was on pred, I was on it for a year and it was probably the most miserable year of my life. Freshman in high school, high dosage (40, tapered me off, I reacted badly to being tapered off so they put me back on it and tried to taper me slower, but I kept getting worse so they turned around and made it higher until I was admitted and put on an IV line of it), I developed a bad depression and at one point I think I had a state of mania while in the hospital on a constant drip of it. I don't remember much of it (I was also on some serious pain meds, so I was looooooopy!), but I remember sreaming and just feeling the lowest of all lows at one point. I wasn't even aware of who was around me, whether my room mate was in there or not, what I was saying, who I was talking to, I was just in a complete mess of a state.
They discharged me and put me on antidepressants two days later.
I've been on those ever since and have battled with depression since then as well.
My parents and I are now wondering if perhaps anxiety and depression are now the primary factor for why I am feeling the way I am. My blood results come back fantastic (my doctor said I'm probably better nourished than he is because I drink Boost every day), I've been tested for loads of things (currently going to be tested for diabetes and thyroid disease, along with some kidney/bladder stuff due to some strange painful cloudy urinary symptoms I've had for a couple of weeks now), and everything is coming back looking great. Like nothing is wrong.
Fortunately my doctors believe me when I'm in pain. They aren't going to give up on me. Oh and another thing, I get very dizzy when I do anything very strenuous or excessively. Like an animated conversation gets me tired and dizzy. I have fainted twice because of these situations. However I am not dehydrated.
Soooo yeah that's about it. Right now I'm just in the wait-and-see-if-pred-helps stage (and loving the side effects... lots of mood swings, definitely feeling the insomnia.. it's almost 3 am! I have finals in the morning!) , also going to get tested for diabetes and thyroid disease, going to see if maybe a change in anti-depression meds helps at all. I'm also on humira and have been for nearly 4 years. I was the first crohn's patient in the state of Iowa to receive it. I was a guinea pig!
Like I said at the beginning, I don't really have any questions about the disease or anything like that, but a support group like this would probably be beneficial.
I like what I've read in some of these threads, so I might stick around. I try not to spend too much time on the internet though... I like living my life as much as I physically can and spending time with my family.
I have dealt with crohn's disease for five+ years. I have joined this board not so much to ask questions about the disease and treatments, but more to get back into a support group of some sort.
I have been having a very rough time with pain and plenty of other symptoms that are common for me in flare ups. Very bad joint pain. In two months I lost twenty pounds and I have managed to keep myself level between 100 and 105 lbs (been here since October), but I'm having a difficult time gaining it back. I drink Boost daily and am also on prednisone for trial treatment (I'll get to that in a moment). I've had experience with pred in the past and it was.. not fun. When I was told I would be put on it again a few weeks ago I cried. Right there in front of the doctor. My appetite has shown a little bit of improvement (as in I actually eat), but the pain that accompanies eating and the nausea has not improved whatsoever. I am on an 8 week dosage of pred, starting at 40 mg and decreasing 5 mg every week.
Anyway. I have a lot of severe joint problems, primarily in my hips, knees, and most recently the joints connecting my ribs to my sternum have become swollen and making breathing painful. I'm on hydrocodone to suppress the pain. However, because of this heavy pain med, I cannot drive. I am a commuter student in college. I live at home, so for the last couple of weeks my parents (both of whom work at the college I attend) have been giving me rides.
That's the most recent about everything.. now I'll go back a little bit.
I was diagnosed with crohn's when I was 13 and fresh out of junior high. Dealt with it through high school, found I have IBS along with it (of course), learned my diet and by the time I graduated high school (I was just barely able to with how much school I ended up missing) I was just about in remission. I spent my first year of college doing extremely well, albeit the joint pain that comes in the winter (northern midwest winters are brutal) and getting every single bug that was going around thanks to a comprised immune system. Other than that though, crohn's was under control.
This last summer I went camping with my family for a large family reunion in northern California and by the end of the camping trip I noticed my appetite beginning to decrease rapidly and I began having those darned stomach pains.
Now my insurance, just a few months before this camping trip, realized (a good 8 months after my birthday) that I was no longer a ped patient, so I was to no longer see the pediatric specialists 100 miles away who had diagnosed me. I was really really pleased with this because I was ready to move on in life and not have to deal with them any more. I met my new local adult GI, things were good.
Skip ahead a couple of months... after the camping trip, I went to my previously (and conveniently) scheduled 3 month follow-up appointment with my GI. He ran some tests, did an upper endoscopy, referred me back to the specialists, said I had serious disease in my duodenum that probably goes further into my small intestine.
Now, I never saw the pictures.
I went to the specialists (adult this time, not peds) and they did a colonoscopy (but not an upper endoscopy, even though they hadn't seen the pictures yet). They were confused because the previous ped specialists said I only had mild disease, yet this local doctor said I had serious disease. They found nothing in my colon. Though during the scope, I was so sick and throwing up my blood pressure was so low that the couldn't fully sedate me, so I was partially awake during the scope, enough for me to respond to any pain. Apparently I was yelling at certain points, like in the rectal area and in other various places where I have been having pain. Yet there was nothing to be seen. Not even in the biopsies.
They did an MRE (new and similar to an MRI, I looked it up, pretty interesting). I couldn't drink all of the barium because the nausea got to be too much. They couldn't give me the medication to stop my small intestine from moving so they could get a super clear picture because that med makes you nauseous and I was already swallowing barium vomit. So the results from that were unconclusive. Showed no distention or dilation anywhere in the small intestine. It did however show that I have a full colon, which was kind of odd because I barely eat and go at least twice a day. They say I probably have dead nerve endings or scar tissue that doesn't work properly and so that slows down the movement in my colon, thus backing me up. So I have been on laxatives for over a month now and that helped some pain, but has done nothing for the nausea/upper stomach pain.
I wish they would just do another upper endoscopy. But before they do that, they want to try me on pred for 8 weeks. I cried when they told me this because last time I was on pred, I was on it for a year and it was probably the most miserable year of my life. Freshman in high school, high dosage (40, tapered me off, I reacted badly to being tapered off so they put me back on it and tried to taper me slower, but I kept getting worse so they turned around and made it higher until I was admitted and put on an IV line of it), I developed a bad depression and at one point I think I had a state of mania while in the hospital on a constant drip of it. I don't remember much of it (I was also on some serious pain meds, so I was looooooopy!), but I remember sreaming and just feeling the lowest of all lows at one point. I wasn't even aware of who was around me, whether my room mate was in there or not, what I was saying, who I was talking to, I was just in a complete mess of a state.
They discharged me and put me on antidepressants two days later.
I've been on those ever since and have battled with depression since then as well.
My parents and I are now wondering if perhaps anxiety and depression are now the primary factor for why I am feeling the way I am. My blood results come back fantastic (my doctor said I'm probably better nourished than he is because I drink Boost every day), I've been tested for loads of things (currently going to be tested for diabetes and thyroid disease, along with some kidney/bladder stuff due to some strange painful cloudy urinary symptoms I've had for a couple of weeks now), and everything is coming back looking great. Like nothing is wrong.
Fortunately my doctors believe me when I'm in pain. They aren't going to give up on me. Oh and another thing, I get very dizzy when I do anything very strenuous or excessively. Like an animated conversation gets me tired and dizzy. I have fainted twice because of these situations. However I am not dehydrated.
Soooo yeah that's about it. Right now I'm just in the wait-and-see-if-pred-helps stage (and loving the side effects... lots of mood swings, definitely feeling the insomnia.. it's almost 3 am! I have finals in the morning!) , also going to get tested for diabetes and thyroid disease, going to see if maybe a change in anti-depression meds helps at all. I'm also on humira and have been for nearly 4 years. I was the first crohn's patient in the state of Iowa to receive it. I was a guinea pig!
Like I said at the beginning, I don't really have any questions about the disease or anything like that, but a support group like this would probably be beneficial.
I like what I've read in some of these threads, so I might stick around. I try not to spend too much time on the internet though... I like living my life as much as I physically can and spending time with my family.
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