- Joined
- Apr 15, 2013
- Messages
- 316
Hey, im new to this forum but I thought posting my story would be a great way to start off and im hoping I'll make some friends who have been through what Ive been through. * This is kinda long...sorry*
So, im Ki3, im 13 in august and I was diagnosed with Crohns Disease in january 2013. In 2012, in october, is when it all started. It wasnt that bad to start with, just a stomach ache. After we realised that my stomach ache wasnt going, I went to the doctors. I was told its probably just a winter bug, and if it wasnt gone after a week come back, so I did. Again they said its probably just taking a while to go, so go home, if it doesnt go, come back.
I kept going back and on about the fourth trip the doctors they did some blood tests. I was not a celiac, but I was aneamic. They gave me nothing for the stomach pains, but they gave me iron supplements. After about 7 trips, I was referred to a clinic at my local hospital. Thats when it got a bit scary. I went to the appointment, and we were told to go and have some blood tests then come back in two days time. I went and had the tests and as we were just about to walk out to the car park I collapsed into a chair and was sick. We went to the clinic and explained what had happened, as I have never reacted to having a blood test before, it wasnt me at all. My doctor was concerned at how ill I was and the next day I was admitted. I stayed in hospital for about a week, not getting very far. Then I was told they were going to do an MRI scan. I hated the scan, but im not going to go into that... After the scan we were told they suspected it was Crohn's disease, and I was to go up to St.Georges hospital to have an endoscopy and colonoscopy to confirm the diagnosis. I hated the whole expierience of it but they said afterwards it was crohns and sent me home with steroids and put me on azathioprine. When I was on 7 tablets a day I loved the steroids, my symptoms were gone and I felt amazing, but then when they went down to about 3 tablets, I had a moon face, joint pain, Insomnia, bloated bellie and my stomach aches were back. I hated it and didnt want to see my friends as my cheeks were big and red.:ymad: the only good thing was the increased appetite and weight gain. I was extremely underweight before and i could feel almost every bone :hallo3: so as I took less and less of the steroids my stomach pains got worse and worse. One evening I had a really bad stomach ache. If on a scale of 10 being the worst possible pain ever and 1 being not bad it was at about a 7. i somehow managed to get to sleep but at 1am I was woken up. The pain was at about an 8 and a half now so I wasnt sure what to do. I have an extremely high pain threshold so I just did what I do best, put up with it. After about half an hour, in just a split second the pain went up to a 10. I screamed and sat up, I didnt want to but for some reason I couldnt help it, it was like a reflex to the pain. I staggered into my dads room and told him that he had to stop the pain, I couldnt take it any more.
I was in so much pain he didnt want to wait for an ambulance so he carried me to the car and we went to a&e.
As doctors were examining me and asking me questions, the pain just kept getting worse, at about 3am we were admitted to the childrens ward there. They tried paracetomol, buskopan and Kodine but nothing worked. I needed sleep so they put me on morphine, the pain didnt go, but it made me sleepy, so I slept until the morning. I had an ultrasound but nothing was significantly bad, there was inflamation but thats normal with crohns. On the second day even Morphine wouldnt stop my pain, my mum was so upset as I was in agony and she couldnt do anything to help. After about a week the pain was a bit more under control and we were sent home.
After about a week of being at home we went back to the hospital...yep...again.. Im not going to explain what happened then, as for a week nothing happened, then eventually they mentioned starting me on remicade. I had to go to st georges about a week later, just for a blood test to make sure I was allowed to start remicade, but when I saw my doctor she said she wanted to try me on a liquid diet before starting the remicade. I said I already tried the drinks, and I couldnt drink the 7 a day I would have to take, so she said to go to my local hospital and get a silk tube put in.
So I survived the weekend then went to my hospital to get the tube put in, we only expected to be there for a day or two. I hated the idea of being awake when they put the tube down, as I have a high pain threshold like I said, but for some reason tubes up noses are my weakness, its like a phobia, i cant stand them. I was sadated and they put a tube down... but it wasnt a silk one as they didnt have any. It was harder than a silk tube, and it actually scratched my throat and made it bleed. I was started on my elemntal diet down the tube, and we discovered with the tube down I couldnt take any meds by mouth. One evening I gagged on a painkiller, and as I leaned forwards to be sick, my back clicked loudly and hurt like hell. the doctor said I only sprained it but it felt so bad. I had to have annother MRI just to make sure nothing in my stomach was worse compared to the first one. They said I had a perforated bowel and had to have emergency surgery at St. Georges the next morning. We went by ambulance with the sirens on. When we got there people came and felt my stomach, said that it wasnt perforated and I wouldnt need any surgery. Turns out that it had been perforated, but closed up. So I stayed and St Georges and changed my feed to Peptamen, and it was going ok I guess. After about two weeks we went home and that leads up to now.
I am half way through my liquid diet, I do sometimes go insane without food but I hardly ever get stomach aches so I guess its good. I really hate my ng tube though, one night the lid came off and it leaked stuff all over my bed and back, then last night my tape came off and my tube slipped, so I had to push it back in (really painful)
Im sorry this is so long but thats my story and I hope maybe you can relate?
Many thanks for reading
So, im Ki3, im 13 in august and I was diagnosed with Crohns Disease in january 2013. In 2012, in october, is when it all started. It wasnt that bad to start with, just a stomach ache. After we realised that my stomach ache wasnt going, I went to the doctors. I was told its probably just a winter bug, and if it wasnt gone after a week come back, so I did. Again they said its probably just taking a while to go, so go home, if it doesnt go, come back.
I kept going back and on about the fourth trip the doctors they did some blood tests. I was not a celiac, but I was aneamic. They gave me nothing for the stomach pains, but they gave me iron supplements. After about 7 trips, I was referred to a clinic at my local hospital. Thats when it got a bit scary. I went to the appointment, and we were told to go and have some blood tests then come back in two days time. I went and had the tests and as we were just about to walk out to the car park I collapsed into a chair and was sick. We went to the clinic and explained what had happened, as I have never reacted to having a blood test before, it wasnt me at all. My doctor was concerned at how ill I was and the next day I was admitted. I stayed in hospital for about a week, not getting very far. Then I was told they were going to do an MRI scan. I hated the scan, but im not going to go into that... After the scan we were told they suspected it was Crohn's disease, and I was to go up to St.Georges hospital to have an endoscopy and colonoscopy to confirm the diagnosis. I hated the whole expierience of it but they said afterwards it was crohns and sent me home with steroids and put me on azathioprine. When I was on 7 tablets a day I loved the steroids, my symptoms were gone and I felt amazing, but then when they went down to about 3 tablets, I had a moon face, joint pain, Insomnia, bloated bellie and my stomach aches were back. I hated it and didnt want to see my friends as my cheeks were big and red.:ymad: the only good thing was the increased appetite and weight gain. I was extremely underweight before and i could feel almost every bone :hallo3: so as I took less and less of the steroids my stomach pains got worse and worse. One evening I had a really bad stomach ache. If on a scale of 10 being the worst possible pain ever and 1 being not bad it was at about a 7. i somehow managed to get to sleep but at 1am I was woken up. The pain was at about an 8 and a half now so I wasnt sure what to do. I have an extremely high pain threshold so I just did what I do best, put up with it. After about half an hour, in just a split second the pain went up to a 10. I screamed and sat up, I didnt want to but for some reason I couldnt help it, it was like a reflex to the pain. I staggered into my dads room and told him that he had to stop the pain, I couldnt take it any more.
I was in so much pain he didnt want to wait for an ambulance so he carried me to the car and we went to a&e.
As doctors were examining me and asking me questions, the pain just kept getting worse, at about 3am we were admitted to the childrens ward there. They tried paracetomol, buskopan and Kodine but nothing worked. I needed sleep so they put me on morphine, the pain didnt go, but it made me sleepy, so I slept until the morning. I had an ultrasound but nothing was significantly bad, there was inflamation but thats normal with crohns. On the second day even Morphine wouldnt stop my pain, my mum was so upset as I was in agony and she couldnt do anything to help. After about a week the pain was a bit more under control and we were sent home.
After about a week of being at home we went back to the hospital...yep...again.. Im not going to explain what happened then, as for a week nothing happened, then eventually they mentioned starting me on remicade. I had to go to st georges about a week later, just for a blood test to make sure I was allowed to start remicade, but when I saw my doctor she said she wanted to try me on a liquid diet before starting the remicade. I said I already tried the drinks, and I couldnt drink the 7 a day I would have to take, so she said to go to my local hospital and get a silk tube put in.
So I survived the weekend then went to my hospital to get the tube put in, we only expected to be there for a day or two. I hated the idea of being awake when they put the tube down, as I have a high pain threshold like I said, but for some reason tubes up noses are my weakness, its like a phobia, i cant stand them. I was sadated and they put a tube down... but it wasnt a silk one as they didnt have any. It was harder than a silk tube, and it actually scratched my throat and made it bleed. I was started on my elemntal diet down the tube, and we discovered with the tube down I couldnt take any meds by mouth. One evening I gagged on a painkiller, and as I leaned forwards to be sick, my back clicked loudly and hurt like hell. the doctor said I only sprained it but it felt so bad. I had to have annother MRI just to make sure nothing in my stomach was worse compared to the first one. They said I had a perforated bowel and had to have emergency surgery at St. Georges the next morning. We went by ambulance with the sirens on. When we got there people came and felt my stomach, said that it wasnt perforated and I wouldnt need any surgery. Turns out that it had been perforated, but closed up. So I stayed and St Georges and changed my feed to Peptamen, and it was going ok I guess. After about two weeks we went home and that leads up to now.
I am half way through my liquid diet, I do sometimes go insane without food but I hardly ever get stomach aches so I guess its good. I really hate my ng tube though, one night the lid came off and it leaked stuff all over my bed and back, then last night my tape came off and my tube slipped, so I had to push it back in (really painful)
Im sorry this is so long but thats my story and I hope maybe you can relate?
Many thanks for reading
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