Hi all! My name's Ben, I'm from the UK and I'm as yet undiagnosed - but firmly fed up with my current situation.
It's a long(ish) and sort of boring story but here goes:
Just over a year ago I began a summer job on a farm, in between university terms. About a month in, approx. The 3rd of July, I came down with what I thought was stomach flu - pretty severe diarrhoea upto 7 ish times a day. After a week of this I went to the docs, to be told that it was probably just a bad bug and to wait a bit longer. 2 weeks passed, and then a month, and then 2 months.. etc. During this period I went back to the docs multiple times only to be told to treat it with loperamide (immodium).
I have now had diarrhoea between 4 and 8 times a day, 7 days a week, non-stop for over 9 months. Occasionally I have mild, dull pain in my lower abdomen, depending on what I eat. I also experience moderate pain in the lower left quarter if I move any faster than walking pace, like a bad stitch (this may be a British term).
I had a colonoscopy in December which showed mild inflammation on the right side of my colon and around my terminal ileum. They took 6 samples, 1 from the very end of my small intestine, none of which showed 'any signs of Crohn's', whatever that means?! They did show lymphoid hyperplasia - but I was told this isn't something that usually gets followed up.
I have had a small bowel MRI scan as well as an abdominal CT scan, neither of which showed anything of interest.
Not long ago I had a capsule endoscopy and was told to wait 4 weeks for the results. After 2 weeks I received a letter stating that the pill didn't leave my stomach for the entire 8 hour recording period, hence no pictures of my small intestine were taken. Has anyone else experienced this??
I'm at the end of my tether. At the beginning of last year I was a happy, healthy 22 year old who enjoyed hiking and mountaineering, with plans to travel the world with my Mrs and to make a wonderful life together. 9 months of diarrhoea later and I'm a miserable shell of a human, standing 6 foot 5 inches tall and weighing a monstrous 69kg. I can't go anywhere that doesn't have a toilet, nor do I have the energy to do so.
I have cut back to gluten free everything, no wholegrain, low fibre, no legumes, almost no red meat, very limited onions etc. And also drink 'goats kefir' (probiotic). If I'm EXTREMELY careful I can limit myself to 4 watery bathroom visits/ day. If I try and eat a varied diet - forget it, 6 times/ day minimum, very watery.
The doctors are STUMPED. They seem to have a flat out refusal to try me on any sort of medication and seem to have no issue with making me wait months at a time for an appointment. I've had a thousand blood tests and fecal calprotectin, none of which have showed anything at all.
Apologies for the massive post - it's been quite a journey from my perspective so far - and I guess I'm hoping that someone could share their perspective on my situation. At the very least; it feels good to finally lay it all out and clear my mind!
Ben
It's a long(ish) and sort of boring story but here goes:
Just over a year ago I began a summer job on a farm, in between university terms. About a month in, approx. The 3rd of July, I came down with what I thought was stomach flu - pretty severe diarrhoea upto 7 ish times a day. After a week of this I went to the docs, to be told that it was probably just a bad bug and to wait a bit longer. 2 weeks passed, and then a month, and then 2 months.. etc. During this period I went back to the docs multiple times only to be told to treat it with loperamide (immodium).
I have now had diarrhoea between 4 and 8 times a day, 7 days a week, non-stop for over 9 months. Occasionally I have mild, dull pain in my lower abdomen, depending on what I eat. I also experience moderate pain in the lower left quarter if I move any faster than walking pace, like a bad stitch (this may be a British term).
I had a colonoscopy in December which showed mild inflammation on the right side of my colon and around my terminal ileum. They took 6 samples, 1 from the very end of my small intestine, none of which showed 'any signs of Crohn's', whatever that means?! They did show lymphoid hyperplasia - but I was told this isn't something that usually gets followed up.
I have had a small bowel MRI scan as well as an abdominal CT scan, neither of which showed anything of interest.
Not long ago I had a capsule endoscopy and was told to wait 4 weeks for the results. After 2 weeks I received a letter stating that the pill didn't leave my stomach for the entire 8 hour recording period, hence no pictures of my small intestine were taken. Has anyone else experienced this??
I'm at the end of my tether. At the beginning of last year I was a happy, healthy 22 year old who enjoyed hiking and mountaineering, with plans to travel the world with my Mrs and to make a wonderful life together. 9 months of diarrhoea later and I'm a miserable shell of a human, standing 6 foot 5 inches tall and weighing a monstrous 69kg. I can't go anywhere that doesn't have a toilet, nor do I have the energy to do so.
I have cut back to gluten free everything, no wholegrain, low fibre, no legumes, almost no red meat, very limited onions etc. And also drink 'goats kefir' (probiotic). If I'm EXTREMELY careful I can limit myself to 4 watery bathroom visits/ day. If I try and eat a varied diet - forget it, 6 times/ day minimum, very watery.
The doctors are STUMPED. They seem to have a flat out refusal to try me on any sort of medication and seem to have no issue with making me wait months at a time for an appointment. I've had a thousand blood tests and fecal calprotectin, none of which have showed anything at all.
Apologies for the massive post - it's been quite a journey from my perspective so far - and I guess I'm hoping that someone could share their perspective on my situation. At the very least; it feels good to finally lay it all out and clear my mind!
Ben