Hey everyone,
First off my name isn't Dwy its just an alias
Bit of a long time lurker(probably about 3 months) and I finally decided I might make an account and tell people about what I have been through over the last year or so. I'm not new to posting things on the internet, I don't mind posting some personal information. This will be a bit long but I think I need to vent
It all started in december 2010. I had been a long time coffee fan, not really probably for about a year, going through numerous coffee cards(those cards you get stamped for free coffee). I even own my own espresso machine and grinder which I bought for my mum as a present for herD). It was in that december that I started to feel sick.
I would go to the toilet probably 5 times a day with diarrhea and terrible stomach pain. It slowly got worse that month and I also had terrible mouth ulcers most of the time all around my tongue which made eating the worst chore I ever endured. I put up with being sick for about a month and then at the start of january 2011 I finally went to the doctors about it. He didn't think much of it until I told him how long it had been going on for which prompted a blood test and some mouth cream for the ulcers(tasted terrible by the way). I never did go for that blood test.. I was actually getting a bit better but I had stopped drinking coffee and mostly shut up about it so my mum would stop worrying.
From January to march my long distance relationship with my new girlfriend had been going strong but I was getting progressively sicker. I was trying to study for exams(I'm a uni student) but I was always having to excuse myself from my friends to pop off to the toilet for what was always a tiny amount of a bowel movement but if I didn't go it gave me the worst pain in the world. The worst moments then at the time was when I had my morning coffee. Not to disturb some of you but I would actually take the coffee into the toilet with me and kept drinking it even though it caused me to instantly bolt to the toilet in the first place.. kids are dumb hey haha.
In won't bore those that got this far with the boring parts anymore and I'll move onto June. I was sitting my final exams for the semester and I went back and saw my GP(in australia this is a general practitioner you just see for anything) and when I told him I had been putting up with terrible bowel movements for 6 months he was astonished! He had me go for a blood test(which turned out to be the same one I was meant to have in January) and it revealed an incredibly high CRP value for inflamation and he started to talk to me about this inflammatory bowel disease thing I had never heard of...
This brings us to the end of June. I had finished my exams(I really soldiered through them, I excused myself to the toilet countless times during 3 hour exams) and was referred to a gastrologist who wanted me to have a colonoscopy. This revealed minor Crohn's disease and I was put onto prednisolone and nexium and felt...
..amazing....
Honestly there's no way to describe it to other people is it? I was sick for so long and suddenly I felt incredible, like all the bad things had gone away. I spent 2 weeks on 40mg of pred and them was put onto azathioprine by the docs recommendation. Life was starting to get a little better.
I have been up on pred, then down too fast that I was terribly sick again. I was though to have had celulitis at the end of my second semester last year(around the start of november) only to find it was actually erothyma nodosum. Apparently the treatment for this is steroids and I was already on steroids so they ruled it out. This was a 8 day hospital stay when all I needed was a large does of pred. I spent around a week on 70mg of prednisolone and I was fine again! Huzzah!.
I have been having regular blood tests, been slowly coming off pred again, by about 2.5mg every 2-3 weeks hoping to get off it soon but this brings us to the present day.
I am currently set to see a specialist who apparently spent a great deal of time at the oxford university studying crohns to get a second opinion on my medication. I have been on azathioprine for about 7 months now yet I am still having trouble coming off pred. So naturally now my parents are questioning everything. My mum is upset that I am sick and can't do anything and my dad is violent and unaproachable and he is simply mad that the doctors bills keep rolling in but I don't "seem" any better. I have been told by both my parents that they don't believe I even have crohns even though I still have the pictures of my bowel to prove it. This is kind of what brought on my post today. I am kind of at an ends. I have reached a point where now my parents don't think I actually have the disease, and my girlfriend of now 13 months doesn't really want to listen to me talk about going to the toilet etc. My dad simply said stop taking the drugs if you feel better because theres no point if I don't feel sick.
I don't want to leave the story on a low note so I'll try and be positive in this lat paragraph ;P. All in all it has been quite a ride. I'm good friends with the local hospital now and I've come to accept what is wrong with me. I have done a lot of research, read about different drugs and now I guess I'm just looking for a listening ear and this seems like the kind of place for it. I don't avoid too many things. Caffeine, juice, and milk mostly(i drink zymil) but most other stuff I still eat.
I might just stop there then, if anyone has anymore specific questions I don't really mind answering so feel free. Nothing too specific though.
I hope I put everything in haha.
Dwy
First off my name isn't Dwy its just an alias
Bit of a long time lurker(probably about 3 months) and I finally decided I might make an account and tell people about what I have been through over the last year or so. I'm not new to posting things on the internet, I don't mind posting some personal information. This will be a bit long but I think I need to vent
It all started in december 2010. I had been a long time coffee fan, not really probably for about a year, going through numerous coffee cards(those cards you get stamped for free coffee). I even own my own espresso machine and grinder which I bought for my mum as a present for her
D). It was in that december that I started to feel sick.I would go to the toilet probably 5 times a day with diarrhea and terrible stomach pain. It slowly got worse that month and I also had terrible mouth ulcers most of the time all around my tongue which made eating the worst chore I ever endured. I put up with being sick for about a month and then at the start of january 2011 I finally went to the doctors about it. He didn't think much of it until I told him how long it had been going on for which prompted a blood test and some mouth cream for the ulcers(tasted terrible by the way). I never did go for that blood test.. I was actually getting a bit better but I had stopped drinking coffee and mostly shut up about it so my mum would stop worrying.
From January to march my long distance relationship with my new girlfriend had been going strong but I was getting progressively sicker. I was trying to study for exams(I'm a uni student) but I was always having to excuse myself from my friends to pop off to the toilet for what was always a tiny amount of a bowel movement but if I didn't go it gave me the worst pain in the world. The worst moments then at the time was when I had my morning coffee. Not to disturb some of you but I would actually take the coffee into the toilet with me and kept drinking it even though it caused me to instantly bolt to the toilet in the first place.. kids are dumb hey haha.
In won't bore those that got this far with the boring parts anymore and I'll move onto June. I was sitting my final exams for the semester and I went back and saw my GP(in australia this is a general practitioner you just see for anything) and when I told him I had been putting up with terrible bowel movements for 6 months he was astonished! He had me go for a blood test(which turned out to be the same one I was meant to have in January) and it revealed an incredibly high CRP value for inflamation and he started to talk to me about this inflammatory bowel disease thing I had never heard of...
This brings us to the end of June. I had finished my exams(I really soldiered through them, I excused myself to the toilet countless times during 3 hour exams) and was referred to a gastrologist who wanted me to have a colonoscopy. This revealed minor Crohn's disease and I was put onto prednisolone and nexium and felt...
..amazing....
Honestly there's no way to describe it to other people is it? I was sick for so long and suddenly I felt incredible, like all the bad things had gone away. I spent 2 weeks on 40mg of pred and them was put onto azathioprine by the docs recommendation. Life was starting to get a little better.
I have been up on pred, then down too fast that I was terribly sick again. I was though to have had celulitis at the end of my second semester last year(around the start of november) only to find it was actually erothyma nodosum. Apparently the treatment for this is steroids and I was already on steroids so they ruled it out. This was a 8 day hospital stay when all I needed was a large does of pred. I spent around a week on 70mg of prednisolone and I was fine again! Huzzah!.
I have been having regular blood tests, been slowly coming off pred again, by about 2.5mg every 2-3 weeks hoping to get off it soon but this brings us to the present day.
I am currently set to see a specialist who apparently spent a great deal of time at the oxford university studying crohns to get a second opinion on my medication. I have been on azathioprine for about 7 months now yet I am still having trouble coming off pred. So naturally now my parents are questioning everything. My mum is upset that I am sick and can't do anything and my dad is violent and unaproachable and he is simply mad that the doctors bills keep rolling in but I don't "seem" any better. I have been told by both my parents that they don't believe I even have crohns even though I still have the pictures of my bowel to prove it. This is kind of what brought on my post today. I am kind of at an ends. I have reached a point where now my parents don't think I actually have the disease, and my girlfriend of now 13 months doesn't really want to listen to me talk about going to the toilet etc. My dad simply said stop taking the drugs if you feel better because theres no point if I don't feel sick.
I don't want to leave the story on a low note so I'll try and be positive in this lat paragraph ;P. All in all it has been quite a ride. I'm good friends with the local hospital now and I've come to accept what is wrong with me. I have done a lot of research, read about different drugs and now I guess I'm just looking for a listening ear and this seems like the kind of place for it. I don't avoid too many things. Caffeine, juice, and milk mostly(i drink zymil) but most other stuff I still eat.
I might just stop there then, if anyone has anymore specific questions I don't really mind answering so feel free. Nothing too specific though.
I hope I put everything in haha.
Dwy
