Hi,
Ok i am new so please be gentle lol But please read further as it seems i am quite rare (i will get there).
In August i was eventually diagnosed with having UC after well over a year of being told it was things like haemorrhoids. Took a colonoscopy for them to eventually get it right.
I was going along trying their solutions of asacol tabs and asacol enemas etc. The enemas worked when i was on them, but when i stopped them it came back. They were then talking of putting me on Azathioprine, but apparently only a half dose because i have a low level of some enzyme (i'll come back to Azethioprine).
I eventually got admitted to hospital for 9 days and got out last Friday. That was an adventure! I was discharged on 40mg of prednisolone and 800mg of Asacol (although i was incorrectly being given 70mg prednisolone in hospital!!) They thought i was well enough to be discharged, but ever since i got out, i have basically got worse and almost back to where i was before i got admitted (yet now i am on steroids)
Now comes the fun bit. In 2000 i was discovered to have osteomyelitis in my ankle, and had surgery to clean it and lots of antibiotics. I've always just had occasional pain etc on that ankle, but its rare. Although a couple of years ago i flared up a bit, and was MRI'd and the Osteopathic surgeon diagnosed it as chronic osteomyelitis. I mentioned this is passing once to one of the consultants (not my main one) when he mentioned putting me on the Azathioprine, and his face just fell and he was stumped. And apparently it is really fortunate that i mentioned it to him, despite the MRI results being right there in my medical records in front of him!!!
So during my hospital visit and ever since, everyone has been fighting over how i can be treated. My gastroenterologist said i should be on Azathioprine and actually infleximab (i think) before that kicks in, but they can't do it because of the osteomyelitis!! Infectious Diseases want a biopsy and then to treat me with IV antibiotics to clear the osteomyelitis. But the Osteopaths are saying they don't want my ankle touched, and i should just be treated for the same thing as i was back in 2000.
Apparently my immune system is probably just dealing with the osteomyelitis and if they suppress that, then it will probably be very bad. It is also the first time they have ever had anyone with both these conditions.
When i go to see the gastroenterologist on Tuesday again, it will be four weeks, i'll be no further forward. Actually i'll be back to the state i was in before i went to hospital, not even the state i came out of it in
I would be more ok with the whole thing if I was on a waiting list for a procedure, but i'm not, i am waiting on someone making a bloody decision!
Does anyone know if in Tuesday nobody has made a decision and still dragging their heels, is there someone i can contact to escalate this further (it the NHS in the UK btw)? It's 4 weeks now, i face the prospect of going back into hospital. Even then, i will also be on at least 2 weeks of IV antibiotics before i can start any other treatment, so the more they delay, the more i am suffering
Sorry if you got bored reading this, i'm just frustrated and had to let it all out.
Ok i am new so please be gentle lol But please read further as it seems i am quite rare (i will get there).
In August i was eventually diagnosed with having UC after well over a year of being told it was things like haemorrhoids. Took a colonoscopy for them to eventually get it right.
I was going along trying their solutions of asacol tabs and asacol enemas etc. The enemas worked when i was on them, but when i stopped them it came back. They were then talking of putting me on Azathioprine, but apparently only a half dose because i have a low level of some enzyme (i'll come back to Azethioprine).
I eventually got admitted to hospital for 9 days and got out last Friday. That was an adventure! I was discharged on 40mg of prednisolone and 800mg of Asacol (although i was incorrectly being given 70mg prednisolone in hospital!!) They thought i was well enough to be discharged, but ever since i got out, i have basically got worse and almost back to where i was before i got admitted (yet now i am on steroids)
Now comes the fun bit. In 2000 i was discovered to have osteomyelitis in my ankle, and had surgery to clean it and lots of antibiotics. I've always just had occasional pain etc on that ankle, but its rare. Although a couple of years ago i flared up a bit, and was MRI'd and the Osteopathic surgeon diagnosed it as chronic osteomyelitis. I mentioned this is passing once to one of the consultants (not my main one) when he mentioned putting me on the Azathioprine, and his face just fell and he was stumped. And apparently it is really fortunate that i mentioned it to him, despite the MRI results being right there in my medical records in front of him!!!
So during my hospital visit and ever since, everyone has been fighting over how i can be treated. My gastroenterologist said i should be on Azathioprine and actually infleximab (i think) before that kicks in, but they can't do it because of the osteomyelitis!! Infectious Diseases want a biopsy and then to treat me with IV antibiotics to clear the osteomyelitis. But the Osteopaths are saying they don't want my ankle touched, and i should just be treated for the same thing as i was back in 2000.
Apparently my immune system is probably just dealing with the osteomyelitis and if they suppress that, then it will probably be very bad. It is also the first time they have ever had anyone with both these conditions.
When i go to see the gastroenterologist on Tuesday again, it will be four weeks, i'll be no further forward. Actually i'll be back to the state i was in before i went to hospital, not even the state i came out of it in
I would be more ok with the whole thing if I was on a waiting list for a procedure, but i'm not, i am waiting on someone making a bloody decision!
Does anyone know if in Tuesday nobody has made a decision and still dragging their heels, is there someone i can contact to escalate this further (it the NHS in the UK btw)? It's 4 weeks now, i face the prospect of going back into hospital. Even then, i will also be on at least 2 weeks of IV antibiotics before i can start any other treatment, so the more they delay, the more i am suffering
Sorry if you got bored reading this, i'm just frustrated and had to let it all out.
