Hello All
I am so grateful to have found a great forum with such a good spirit of caring and sharing.
I am 40 years old and have just been diagnosed with Crohn's in the last 2 weeks after a horrible couple of months in my local hospital. I live on a tiny Island where the only hospital has very little experience of Crohn's at all. I still have some scepticism about the diagnosis but they found ulceration and inflammation in the terminal illeum so I guess it is probably correct.
It all really start in early July (though I had been tired and had begun to develop food allergies a few months earlier). Anyway, I had been doing some very stressful Bar exams and collapsed with pain in my tummy on 6th July, followed with three weeks of the big D. I figured I had a bug but completely lost my appetite and wasnt picking up, then overnight my symptoms got 10 x worse. I lost the ability to stand and walk and kept lying on the floor. I also could not stop passing water - 40+ times a day. The doctor came out and there appeared to be reduced motor power in my legs so I was admitted for the first time. Unfortunately my first doctor was a nightmare, decided I was anxious and gave me antibiotics and antidepressants and discharged me. Whilst I was in they made me eat as much food as I could manage and I began to realise that when I ate I felt worse.
At home things got worse and worse. I was in agony all day and couldnt sit up. My lower abdomen became so bloated that two livid stretch marks developed on either side and on the right my bowel has become visibly misshapen and looks as if I have an appendix scar. In the end I was readmitted, covered in rashes and hives. It was decided that I had had a virus and developed multiple food allergies. I was put on anti-histimines and rice and chicken to eat. I was then sent to a rehabilitation unit where I was taken off the diet and within 2 days I could not even stand. I was readmitted to hospital and finally had a gastroscopy,colonoscopy and barium swallow. By then my capilliaries had started to burst and have been told that this is due to lack of vitamin C.
Everytime I was eating anything I felt shivery inside, I would sneeze and itch immediately and then for the next few hours it felt like I was being poisoned. When I lay down my body and legs were shaking and in the night I was waking up in the early hours with a pulse up to 180 wanting to be sick. My vision was being affected and I could not tolerate noise. I had and still have severe pain in my hips and knees and down the outside of each foot. I also have shoulder pain and tightness in my upper arms. I also itch from the scalp to the face, legs, arms and soles of feet/palms.
Since diagnosis 2 weeks ago I have been on budesonide (sp?) - I believe this is a steroid which targets only your gut (?!) and I am on it for 12 weeks. I have also been on elemental drinks since then. I am back home since yesterday but still have very weak legs and can barely walk the length of my flat to the loo. I have mouth ulcers which wont shift and a disgusting white coating on my tongue which wont go. The itching (particularly bad in my nose) is subsiding a bit but still driving me mad. I also have very hard and unforgiving internal piles. I feel sick all the time. As well as the steroids I am taking Motilium to make things move along a bit, probiotic capsules and the anti-histimines. I know they are going to try and get me to start re-introducing food next week and I am very concerned as this is a learning process for my doctors and that does not feel good.
The other thing they cannot explain is why I have serious bloating in my stomach although it looks clear from Crohn's. I have serious indigestion all the time and even when I drink the elementals. This is just getting worse. I also still have no appetite after 14 weeks. They have told me they dont know whether it will come back ...
Whenever I have told the doctors my symptoms they have told me I am a very odd case and look at me as if I am crazy. Any comments, suggestions, comfort that might be offered would be most welcome. Well this is my tale (phew).
All the best, Trieste
I am so grateful to have found a great forum with such a good spirit of caring and sharing.
I am 40 years old and have just been diagnosed with Crohn's in the last 2 weeks after a horrible couple of months in my local hospital. I live on a tiny Island where the only hospital has very little experience of Crohn's at all. I still have some scepticism about the diagnosis but they found ulceration and inflammation in the terminal illeum so I guess it is probably correct.
It all really start in early July (though I had been tired and had begun to develop food allergies a few months earlier). Anyway, I had been doing some very stressful Bar exams and collapsed with pain in my tummy on 6th July, followed with three weeks of the big D. I figured I had a bug but completely lost my appetite and wasnt picking up, then overnight my symptoms got 10 x worse. I lost the ability to stand and walk and kept lying on the floor. I also could not stop passing water - 40+ times a day. The doctor came out and there appeared to be reduced motor power in my legs so I was admitted for the first time. Unfortunately my first doctor was a nightmare, decided I was anxious and gave me antibiotics and antidepressants and discharged me. Whilst I was in they made me eat as much food as I could manage and I began to realise that when I ate I felt worse.
At home things got worse and worse. I was in agony all day and couldnt sit up. My lower abdomen became so bloated that two livid stretch marks developed on either side and on the right my bowel has become visibly misshapen and looks as if I have an appendix scar. In the end I was readmitted, covered in rashes and hives. It was decided that I had had a virus and developed multiple food allergies. I was put on anti-histimines and rice and chicken to eat. I was then sent to a rehabilitation unit where I was taken off the diet and within 2 days I could not even stand. I was readmitted to hospital and finally had a gastroscopy,colonoscopy and barium swallow. By then my capilliaries had started to burst and have been told that this is due to lack of vitamin C.
Everytime I was eating anything I felt shivery inside, I would sneeze and itch immediately and then for the next few hours it felt like I was being poisoned. When I lay down my body and legs were shaking and in the night I was waking up in the early hours with a pulse up to 180 wanting to be sick. My vision was being affected and I could not tolerate noise. I had and still have severe pain in my hips and knees and down the outside of each foot. I also have shoulder pain and tightness in my upper arms. I also itch from the scalp to the face, legs, arms and soles of feet/palms.
Since diagnosis 2 weeks ago I have been on budesonide (sp?) - I believe this is a steroid which targets only your gut (?!) and I am on it for 12 weeks. I have also been on elemental drinks since then. I am back home since yesterday but still have very weak legs and can barely walk the length of my flat to the loo. I have mouth ulcers which wont shift and a disgusting white coating on my tongue which wont go. The itching (particularly bad in my nose) is subsiding a bit but still driving me mad. I also have very hard and unforgiving internal piles. I feel sick all the time. As well as the steroids I am taking Motilium to make things move along a bit, probiotic capsules and the anti-histimines. I know they are going to try and get me to start re-introducing food next week and I am very concerned as this is a learning process for my doctors and that does not feel good.
The other thing they cannot explain is why I have serious bloating in my stomach although it looks clear from Crohn's. I have serious indigestion all the time and even when I drink the elementals. This is just getting worse. I also still have no appetite after 14 weeks. They have told me they dont know whether it will come back ...
Whenever I have told the doctors my symptoms they have told me I am a very odd case and look at me as if I am crazy. Any comments, suggestions, comfort that might be offered would be most welcome. Well this is my tale (phew).
All the best, Trieste
