Hi everyone, Im new to the forum but I have been reading all your post for a while now so have finally been brave enough to join in. Im am undiagnosed at present, hopefully getting a bit closer..
Ive had problems with my stomach since I was 14, had a bad case of Right sided abdo pain which resulted in my appendix being removed, my appendix where fine and the pain carried on. Suffered badly with consitpation all throughout my teens along with upper burning abdo pain like severve heart burn between my ribs, had a couple of OGDs one showed an ulcer and the other gastritis. Given omeprazole which helped the burning pain but not my bowels and the right sided stabbing type pain. By then my gastro gave up on me and thought the pain could be from cysts on my overaries so I was sent to see a gynaecologist, diganosed with endrometriosis had surgery and treatment for this, but still getting stabbing pains.
Every once a year I would get a flare up of the burning heartburn pain which would end me up in a&e having morphine and blood tests, nothing showed up apart from a mildly elevated CRP level. On one of my admissions they decided to refer me back to gastro as I was now having problems with consitpation and watery bowel movements and extreme fatigue, I asked for a different doctor to perviously. Went to see this doctor and he reviewed my history and bloods etc and noticed my CRP was always high when I had these problems, he requested more thorough bloods and my b12 and folate came back really low, so I had a colonosopy (at the time I was symptom free) which was normal, an MRI which said there might be possible changes to the terminal illiuem. I was then sent for a capsule endoscopy which came back normal as well. Still having these symptoms my gastro sent me to dietitan and I tried the low fodmap diet which was no help, one day something would trigger me, the next day it would be fine.
Recently my gastro asked for a feacal calprotectin which came back at 85 (slightly elevated) so he requested another colonoscopy. This time it was horrible, I was having symptoms during this one, I could barely keep down the prep had to rely on anti sickness tablets to ingest it and during the procedure it was incredibly painful, he said he was unable to pass the scope into the terminal illieum and it was causing me the stabbing pain I have experienced most of my life. He said it looked like there may be some inflammation there but could only biopsy the surrounding areas which is frustrating, they came back as normal...
anyway I am now waiting for an MRI scan on the 30th may and the IBD nurse said they will try me with some crohns med's after that, they began with a 'B' but i was a bit out of it from the sedation so I cant really remember.
Has anyone else had a similar experience to me? I guess so being as there is an undiagnosed club!! I dont want to have anything wrong with me but I have been fobbed off with stress and depression for years now Im so frustrated. Also Im so tired all the time, I am up all night in the bathroom some nights!!
Has anyone else gone on crohns med's when they cant see where it is properly and did it help?
Sorry for the long post thanks for listening xxx
Ive had problems with my stomach since I was 14, had a bad case of Right sided abdo pain which resulted in my appendix being removed, my appendix where fine and the pain carried on. Suffered badly with consitpation all throughout my teens along with upper burning abdo pain like severve heart burn between my ribs, had a couple of OGDs one showed an ulcer and the other gastritis. Given omeprazole which helped the burning pain but not my bowels and the right sided stabbing type pain. By then my gastro gave up on me and thought the pain could be from cysts on my overaries so I was sent to see a gynaecologist, diganosed with endrometriosis had surgery and treatment for this, but still getting stabbing pains.
Every once a year I would get a flare up of the burning heartburn pain which would end me up in a&e having morphine and blood tests, nothing showed up apart from a mildly elevated CRP level. On one of my admissions they decided to refer me back to gastro as I was now having problems with consitpation and watery bowel movements and extreme fatigue, I asked for a different doctor to perviously. Went to see this doctor and he reviewed my history and bloods etc and noticed my CRP was always high when I had these problems, he requested more thorough bloods and my b12 and folate came back really low, so I had a colonosopy (at the time I was symptom free) which was normal, an MRI which said there might be possible changes to the terminal illiuem. I was then sent for a capsule endoscopy which came back normal as well. Still having these symptoms my gastro sent me to dietitan and I tried the low fodmap diet which was no help, one day something would trigger me, the next day it would be fine.
Recently my gastro asked for a feacal calprotectin which came back at 85 (slightly elevated) so he requested another colonoscopy. This time it was horrible, I was having symptoms during this one, I could barely keep down the prep had to rely on anti sickness tablets to ingest it and during the procedure it was incredibly painful, he said he was unable to pass the scope into the terminal illieum and it was causing me the stabbing pain I have experienced most of my life. He said it looked like there may be some inflammation there but could only biopsy the surrounding areas which is frustrating, they came back as normal...
anyway I am now waiting for an MRI scan on the 30th may and the IBD nurse said they will try me with some crohns med's after that, they began with a 'B' but i was a bit out of it from the sedation so I cant really remember.
Has anyone else had a similar experience to me? I guess so being as there is an undiagnosed club!! I dont want to have anything wrong with me but I have been fobbed off with stress and depression for years now Im so frustrated. Also Im so tired all the time, I am up all night in the bathroom some nights!!
Has anyone else gone on crohns med's when they cant see where it is properly and did it help?
Sorry for the long post thanks for listening xxx
if I think of any more questions (I think of loads) I'll ask it's such a confusing time I just wish they would find something so I can get on with managing it!!
