hello!
Hi, I'm Alan, I was diagnosed with crohn's disease at the end of july this year.
I had symptoms for at least 2 years before diagnosis, I had pretty constant bleeding after going to the bathroom. It started off as a small amount and stayed at that level for a good while, then it would get worse, like elevator scene in the shining in the toilet. Then it would stop for a few weeks and return at a low level. That was pretty much the cycle it followed.
I didn't seek medical treatment (yes, I am an idiot, when my sister learned how long I had symptoms for, she said if I did anything similar again she'd punch me in the face
) and basically found ways to rationalise the blood, oh I was constipated and that's why there is blood, it's a small tear that reopens that's all etc. I finally told my parents about it and went to the doctor, was put on suppositories for it and that didn't help, so I was booked in for a colonoscopy. Slightly nervous but everything seemed to go OK. Woke up, was given food and told to go home, everything was fine at home except for cramping. The pain got worse and I felt really naseus, of course, being worried that something had been torn or there was a complication. We were told to go to the hospital so off we went.
That was not a fun trip at all, took about 40 minutes, but during that time I felt really sick then started vomitting. Got to hospital, was checked in, doctor who did the colonoscopy could hear normal sounds and basically told me he was 99% sure I had Crohn's or Ulcerative Colitis and that now I was in the hospital, he'd keep me in to get all the tests out of the way. I vomitted everything that I swallowed, including the pain meds they gave me (they taste awful on the way back up!)
I was kept in for 4 days or so (not sure of exact dates) to get additional tests out of the way, x-rays and an MRI. In all it only took about a month or so from me going to the doctor to my diagnosis. I was quite lucky.
I was put on steroids, ate all around me, got moon face, felt slightly manic at times, had some weird rages and got hot flashes. I went up to 15 stone in 2 months and acquired stretch marks. Finally back to my weight pre steroids (woo!).
I'm now on immuran, 200 mg a day. I was fine until recently when I started getting ridiculously tired, to the point where I was waking up and just waiting till I could go asleep again and naps always make me feel worse. Went to my gp and he did a blood test found that my iron was slightly low, but not by much (I think it was like 12.9 and I should be 13), so gave me iron tablets to take for the month. I do feel slightly less tired. I have had low level backround tiredness for as long as I can remember and for a few days on steroids I felt normal, then the tiredness came back. When in the hospital I was low on protein, I think something like 7, which I thought strange because I eat quite a bit of protein.
So far the only food I have found to give me problems are red onions, regular onions are fine, had them a few weeks ago and since then the blood has returned in small amounts, I'm not scheduled to see my GI until february, so don't know if I should ring the IBD nurse or just wait till then and same with the tiredness, especially as I have exams over the next two weeks then I'm done till mid january and my appointment is then only a month or so after that. I know it's supposed to take awhile for immuran to kick in and I was doing fine until the onions >.<, though I did have the tiredness before that.
It's strange how I had just accepted the symptoms, I would have pain when going to the bathroom and just accepted that was how it was going to be for the rest of my life. I don't really know how I managed to get into that state of mind looking back and I feel quite lucky that it was "only" crohn's rather than something that could have been much much worse!
Personally, I think it's quite mild, though the doctor didn't state the severity. I have occasional twinges of pain and cramps, but nothing too bad. Pretty much only symptoms were blood and pain when going to the bathroom. I didn't have any weight loss or anything. A foot of my ilieum has crohn's/is infected (is that the right term? dunno what else to use really!)
My only real fear and worry at the moment is that it will get markedly worse now that I am aware it's there, which I know is stupid! Hoping the meds will help tame it to some extent! or keep it a this level. I know there is no way of knowing so I'm really just hoping for the best!
as regards to personal life etc I'm 21 and in my final year of college and will be getting a degree in English and Classical Studies. Once that's done I'm going to apply for an MA in Creative Writing, my overall goal is the be an author that is entirely supported by my work.
Also sorry for such a long first post! Didn't intend for that to happen at all!
Hi, I'm Alan, I was diagnosed with crohn's disease at the end of july this year.
I had symptoms for at least 2 years before diagnosis, I had pretty constant bleeding after going to the bathroom. It started off as a small amount and stayed at that level for a good while, then it would get worse, like elevator scene in the shining in the toilet. Then it would stop for a few weeks and return at a low level. That was pretty much the cycle it followed.
I didn't seek medical treatment (yes, I am an idiot, when my sister learned how long I had symptoms for, she said if I did anything similar again she'd punch me in the face
) and basically found ways to rationalise the blood, oh I was constipated and that's why there is blood, it's a small tear that reopens that's all etc. I finally told my parents about it and went to the doctor, was put on suppositories for it and that didn't help, so I was booked in for a colonoscopy. Slightly nervous but everything seemed to go OK. Woke up, was given food and told to go home, everything was fine at home except for cramping. The pain got worse and I felt really naseus, of course, being worried that something had been torn or there was a complication. We were told to go to the hospital so off we went.That was not a fun trip at all, took about 40 minutes, but during that time I felt really sick then started vomitting. Got to hospital, was checked in, doctor who did the colonoscopy could hear normal sounds and basically told me he was 99% sure I had Crohn's or Ulcerative Colitis and that now I was in the hospital, he'd keep me in to get all the tests out of the way. I vomitted everything that I swallowed, including the pain meds they gave me (they taste awful on the way back up!)
I was kept in for 4 days or so (not sure of exact dates) to get additional tests out of the way, x-rays and an MRI. In all it only took about a month or so from me going to the doctor to my diagnosis. I was quite lucky.
I was put on steroids, ate all around me, got moon face, felt slightly manic at times, had some weird rages and got hot flashes. I went up to 15 stone in 2 months and acquired stretch marks. Finally back to my weight pre steroids (woo!).
I'm now on immuran, 200 mg a day. I was fine until recently when I started getting ridiculously tired, to the point where I was waking up and just waiting till I could go asleep again and naps always make me feel worse. Went to my gp and he did a blood test found that my iron was slightly low, but not by much (I think it was like 12.9 and I should be 13), so gave me iron tablets to take for the month. I do feel slightly less tired. I have had low level backround tiredness for as long as I can remember and for a few days on steroids I felt normal, then the tiredness came back. When in the hospital I was low on protein, I think something like 7, which I thought strange because I eat quite a bit of protein.
So far the only food I have found to give me problems are red onions, regular onions are fine, had them a few weeks ago and since then the blood has returned in small amounts, I'm not scheduled to see my GI until february, so don't know if I should ring the IBD nurse or just wait till then and same with the tiredness, especially as I have exams over the next two weeks then I'm done till mid january and my appointment is then only a month or so after that. I know it's supposed to take awhile for immuran to kick in and I was doing fine until the onions >.<, though I did have the tiredness before that.
It's strange how I had just accepted the symptoms, I would have pain when going to the bathroom and just accepted that was how it was going to be for the rest of my life. I don't really know how I managed to get into that state of mind looking back and I feel quite lucky that it was "only" crohn's rather than something that could have been much much worse!
Personally, I think it's quite mild, though the doctor didn't state the severity. I have occasional twinges of pain and cramps, but nothing too bad. Pretty much only symptoms were blood and pain when going to the bathroom. I didn't have any weight loss or anything. A foot of my ilieum has crohn's/is infected (is that the right term? dunno what else to use really!)
My only real fear and worry at the moment is that it will get markedly worse now that I am aware it's there, which I know is stupid! Hoping the meds will help tame it to some extent! or keep it a this level. I know there is no way of knowing so I'm really just hoping for the best!
as regards to personal life etc I'm 21 and in my final year of college and will be getting a degree in English and Classical Studies. Once that's done I'm going to apply for an MA in Creative Writing, my overall goal is the be an author that is entirely supported by my work.
Also sorry for such a long first post! Didn't intend for that to happen at all!
