This isn't easy to sum up, it's been gone on for a while now and I've tried so hard to be positive that I think I've tripped myself up at times.
I'm in my early 40's, a part time fitness instructor and would have said I was in the best shape ever a couple of years ago, migraines gone and periods regular with the firness stuff.
Last January I went gluten free (parent with coeliac disease so it seemed sensible), for a month things seemed better, and the bad days... well I put those down to the mistakes I made in trying out GF diet. I get really desperate urgency for the toilet and well, things change on a day to day and week to week basis so it's difficult to pin down what I'm eating that's wrong. Most noticeable tho was my change in sleeping habits, I actually started waking up in the mornings so decided to stick with GF.
GP did bloods, I'm not Coeliac. Another GP put me on codeine for diarrhoea which actually gave me diorrhoea after a few weeks and the worse water infection ever (3 courses of antibiotics to clear). By the time I saw a consultant I was taking loperamide regularly, he was happy this was working for me and I'd lost about half a stone so he was happy to leave it there as I felt things had stabilised and he was happy IBS was under control.
Then things got worse again and I lost more weight, another GP gave me mebeverine as I'd never been given anything for IBS - in my little hissy fit at the bad weight loss I reintroduced gluten, I only took 2 of those tablets - VERY bad day at work the next day :confused2: It was so quick that I think it was the mebeverine, I've tried gluten again since with nowhere near the same impact.
I was referred back to hospital and they agreed Colonoscopy was needed, he also agreed I should take amitriptyline. The doctor that did the colonoscopy wrote crohns disease as I had an imflammed ulcerated terminal ileum, he was very reassuring in that it was nothing they couldn't sort out. I was actually deliriously happy at the idea I might get steroids and regain my weight, I think I was just so happy to have an answer at last.
I saw the consultant again and he wouldn't refer me to a nutritionalist or medicate me - my blood tests are so good and healthy!!! He referred me for an MRI on my small bowel but was insistent that it must be IBS. The MRI was apparently fine although it has thrown up some issues with my kidneys/bladder so he's referred me on that :confused2: My next appointment with him is in July!!!!
In the meantime, I've just had a full MRI on my spine as I'm struggling to walk, I'm waiting results on that now :eek2: That probably scares me most in terms of falling over when trying to get to the loo :eek2::eek2:
I feel SO frustrated right now, I've tried speaking to the consultants secretary and she says he doesn't feel I need any more tests. I really don't know what to do right now. I've booked an appointment with my GP to see if at least I can get an 'assisted' diet as my weight is my main concern. I am trying so hard to be positive right now but it's really hard.
I'm in my early 40's, a part time fitness instructor and would have said I was in the best shape ever a couple of years ago, migraines gone and periods regular with the firness stuff.
Last January I went gluten free (parent with coeliac disease so it seemed sensible), for a month things seemed better, and the bad days... well I put those down to the mistakes I made in trying out GF diet. I get really desperate urgency for the toilet and well, things change on a day to day and week to week basis so it's difficult to pin down what I'm eating that's wrong. Most noticeable tho was my change in sleeping habits, I actually started waking up in the mornings so decided to stick with GF.
GP did bloods, I'm not Coeliac. Another GP put me on codeine for diarrhoea which actually gave me diorrhoea after a few weeks and the worse water infection ever (3 courses of antibiotics to clear). By the time I saw a consultant I was taking loperamide regularly, he was happy this was working for me and I'd lost about half a stone so he was happy to leave it there as I felt things had stabilised and he was happy IBS was under control.
Then things got worse again and I lost more weight, another GP gave me mebeverine as I'd never been given anything for IBS - in my little hissy fit at the bad weight loss I reintroduced gluten, I only took 2 of those tablets - VERY bad day at work the next day :confused2: It was so quick that I think it was the mebeverine, I've tried gluten again since with nowhere near the same impact.
I was referred back to hospital and they agreed Colonoscopy was needed, he also agreed I should take amitriptyline. The doctor that did the colonoscopy wrote crohns disease as I had an imflammed ulcerated terminal ileum, he was very reassuring in that it was nothing they couldn't sort out. I was actually deliriously happy at the idea I might get steroids and regain my weight, I think I was just so happy to have an answer at last.
I saw the consultant again and he wouldn't refer me to a nutritionalist or medicate me - my blood tests are so good and healthy!!! He referred me for an MRI on my small bowel but was insistent that it must be IBS. The MRI was apparently fine although it has thrown up some issues with my kidneys/bladder so he's referred me on that :confused2: My next appointment with him is in July!!!!
In the meantime, I've just had a full MRI on my spine as I'm struggling to walk, I'm waiting results on that now :eek2: That probably scares me most in terms of falling over when trying to get to the loo :eek2::eek2:
I feel SO frustrated right now, I've tried speaking to the consultants secretary and she says he doesn't feel I need any more tests. I really don't know what to do right now. I've booked an appointment with my GP to see if at least I can get an 'assisted' diet as my weight is my main concern. I am trying so hard to be positive right now but it's really hard.