Hello
I have been reading these boards for a while and have found great advice/comfort in many of the posts.
Im a 26 year old female living in the UK. I have felt poorly on and off for about 4 years. It all started with a sharp right hand pain in my side close to my appendix scar (had appendix out when I was 16) and a high fever. I had blood in my urine so was diagnosed with a severe kidney infection, however when the results came back from the hospital no infection was found in my urine and it was just put down to unknown. I started to get better but the sharp right hand pain kept appearing evey now and then and to this day has never gone away. It only lasts 30 seconds or so and sometimes isnt everyday. I kind of forgot about the pain, it didnt really hinder my life considering it was only around for such a short amount of time. I did notice though that I nearly always had loose stools and occassional crampy pains with watery diarreah. I just thought this was normal though so didnt really pursue it.
Then about two years ago I started to feel just not right, I was cold all the time, tired, I ached and just felt out of sorts. I went to the doctors and explained all of this, I had loads of blood tests which came back to show i had an underactive thyroid. I was put on thyroxine and within 2 weeks I felt so much better and honestly believed this was the answer to all my problems. It didnt take long though for me to feel bad again and this time my vision went blurry, I went to see an opticion who diagnosed dry eyes. I saw endocrinologists/ opthamologists but no one could help me. 2 years on I still feel achey, sick, fluey and have uveitis in my eyes. 6 months ago I then started to develop central stomach cramps which appeared 3 - 4 hours after eating. These persisted for about 2 months and then went away for a month. When they came back they were a bit worse and sooner after eating. Im not in agony but im certainly aware of pain which sometimes wakes me in the night. Ive lost about a stone (I was skinny before) even though I do eat a lot of food. I love food but the crampy feelings are starting to make me scared of eating. I guess then I started to tie the years of diareah in with the pains.
I was refered to a gasterenterologist who immedietly said he thought it was chrons, he said everything I had told him indicated it was chrons. I had a barium follow through last week which was clear and an ultrasound the week before which was also clear. I then had a colonoscopy yesterday and he couldnt get all the way round. Im not sure how far he got but I dont think it was very far. He said that is quite normal with young people and their anatomy means its difficult to reach all the way through? is this right? Anyway what he did see was clear although he did take biopsies. I have an appointment with him in 6 weeks but mum said he now doesnt think chrons as my blood work was normal too.
I am sooooooooooooooo frustrated. Ok dont get me wrong I dont want chrons disease but I feel awful everyday and i need answers. It just isnt fair, I keep thinking people are going to start thinking im making it up. Its got to the stage now where i dont tell people anything as its easier than saying im poorly but no one knows why.
By the way my dad has protein s deficiency which is a very rare autoimmine disease. (i dont have that) he also has rhematoid arthritis and i have a sister who is confined to a wheelchair with severe arthtiris of the spine and a growth on her thyroid. My GP is convinced something autoimmune is going on but ive had so many blood tests which are all so inconclusive.
Any help or advice would be so welcomed.
If you have read this far thank you so much xxxxxxxxxx
I have been reading these boards for a while and have found great advice/comfort in many of the posts.
Im a 26 year old female living in the UK. I have felt poorly on and off for about 4 years. It all started with a sharp right hand pain in my side close to my appendix scar (had appendix out when I was 16) and a high fever. I had blood in my urine so was diagnosed with a severe kidney infection, however when the results came back from the hospital no infection was found in my urine and it was just put down to unknown. I started to get better but the sharp right hand pain kept appearing evey now and then and to this day has never gone away. It only lasts 30 seconds or so and sometimes isnt everyday. I kind of forgot about the pain, it didnt really hinder my life considering it was only around for such a short amount of time. I did notice though that I nearly always had loose stools and occassional crampy pains with watery diarreah. I just thought this was normal though so didnt really pursue it.
Then about two years ago I started to feel just not right, I was cold all the time, tired, I ached and just felt out of sorts. I went to the doctors and explained all of this, I had loads of blood tests which came back to show i had an underactive thyroid. I was put on thyroxine and within 2 weeks I felt so much better and honestly believed this was the answer to all my problems. It didnt take long though for me to feel bad again and this time my vision went blurry, I went to see an opticion who diagnosed dry eyes. I saw endocrinologists/ opthamologists but no one could help me. 2 years on I still feel achey, sick, fluey and have uveitis in my eyes. 6 months ago I then started to develop central stomach cramps which appeared 3 - 4 hours after eating. These persisted for about 2 months and then went away for a month. When they came back they were a bit worse and sooner after eating. Im not in agony but im certainly aware of pain which sometimes wakes me in the night. Ive lost about a stone (I was skinny before) even though I do eat a lot of food. I love food but the crampy feelings are starting to make me scared of eating. I guess then I started to tie the years of diareah in with the pains.
I was refered to a gasterenterologist who immedietly said he thought it was chrons, he said everything I had told him indicated it was chrons. I had a barium follow through last week which was clear and an ultrasound the week before which was also clear. I then had a colonoscopy yesterday and he couldnt get all the way round. Im not sure how far he got but I dont think it was very far. He said that is quite normal with young people and their anatomy means its difficult to reach all the way through? is this right? Anyway what he did see was clear although he did take biopsies. I have an appointment with him in 6 weeks but mum said he now doesnt think chrons as my blood work was normal too.
I am sooooooooooooooo frustrated. Ok dont get me wrong I dont want chrons disease but I feel awful everyday and i need answers. It just isnt fair, I keep thinking people are going to start thinking im making it up. Its got to the stage now where i dont tell people anything as its easier than saying im poorly but no one knows why.
By the way my dad has protein s deficiency which is a very rare autoimmine disease. (i dont have that) he also has rhematoid arthritis and i have a sister who is confined to a wheelchair with severe arthtiris of the spine and a growth on her thyroid. My GP is convinced something autoimmune is going on but ive had so many blood tests which are all so inconclusive.
Any help or advice would be so welcomed.
If you have read this far thank you so much xxxxxxxxxx