I have been really very ill and having a flare for the last week or just over, and have been trying to hard to get an appointment with the IBD team at the hospital I'm under. I eventually got given an appointment today at 3pm. which I've just got home from.
The nurse on the phone told me to come early before my appointment, get an abdominal xray done, have some blood tests done and bring a stool sample. I got there early, went to radiology but there was no card there for me so no x-ray to be had. I then went to get my blood done and there were 36 people before me, I waited for over an hour and then had to go to the clinic appointment so didn't get bloods done.
I waited nearly another hour to see the Doctor, and he wasn't interested in anything I had to say. I tried to explain how unwell I'd been, trying to go over all my symptoms and all he was doing was doing something on the computer and just kept telling me I need to get back on my infliximab, which I've not had because I've been on and off antibiotics for months. According to him I should have had it anyway, but how can I when I ring up and the nurses tell me not to come because i'm on antibiotics??
He said they would test my stool sample and see what the results are and make a decision. I asked what would happen in the mean time, because I was feeling so unwell, and he actually just said "nothing". So basically I've got to wait for the results of the stool test, but he's said that if it comes back clear then there's nothing for him to do.
I don't take anything for my crohns other than the infliximab which I've been on for years. There have been many new advances with medicines since then, so why can they not look at something else which might help me? I feel like I'm just stuck in the middle of nowhere, with no one prepared to actually listen and help. I absolutely detest having this disease as it is, but to just not get any help when I'm incredibly unwell is appalling. I've got no energy left to deal with this any more.
The nurse on the phone told me to come early before my appointment, get an abdominal xray done, have some blood tests done and bring a stool sample. I got there early, went to radiology but there was no card there for me so no x-ray to be had. I then went to get my blood done and there were 36 people before me, I waited for over an hour and then had to go to the clinic appointment so didn't get bloods done.
I waited nearly another hour to see the Doctor, and he wasn't interested in anything I had to say. I tried to explain how unwell I'd been, trying to go over all my symptoms and all he was doing was doing something on the computer and just kept telling me I need to get back on my infliximab, which I've not had because I've been on and off antibiotics for months. According to him I should have had it anyway, but how can I when I ring up and the nurses tell me not to come because i'm on antibiotics??
He said they would test my stool sample and see what the results are and make a decision. I asked what would happen in the mean time, because I was feeling so unwell, and he actually just said "nothing". So basically I've got to wait for the results of the stool test, but he's said that if it comes back clear then there's nothing for him to do.
I don't take anything for my crohns other than the infliximab which I've been on for years. There have been many new advances with medicines since then, so why can they not look at something else which might help me? I feel like I'm just stuck in the middle of nowhere, with no one prepared to actually listen and help. I absolutely detest having this disease as it is, but to just not get any help when I'm incredibly unwell is appalling. I've got no energy left to deal with this any more.