- Location
- UNITED KINGDOM
Well went back today following my last appointment 2 weeks ago. Here's what happened.
He had not heard back from Rheumatologist (which is a shame since he at least is convinced it's IBD) and the Lupus antibody tests were not back yet (had to be sent to another Hospital as they don't do those there). Everything normal on the other ones apart from CRP which is now 36. One week it was 22 nd literally the next it was 36. While I am glad my bloods finally confirm I am worsening this is worrying- it has been 22-25 every time for 4 years now, with only a blip of 27 when I had an ear infection.
He's had a second opinion on the Barium images which has been agreed is looking normal. He had a confrence with 3 GI's and 2 Radioloigist's about my case. A repeat WBC scan (my only abnormality apart from bloods) was vetoed due to the radiation exposure and my age, they did not feel it neccessary to have it repeated.
I did feel we kept going round in circles with the "60% of cases of CD are found where you have been cleared, but nothing in medicine is 100%, your bloods are not showing other abnormalities, but CD can be anywhere" etc etc. Telling me I had an Irritable Bowel wasn't terribly helpful since yeah I guessed that 5 years ago, the cause remains uncertain, nor that I had to learn to live with it, since i did and then got a whole lot worse.
I also find that the reports on scope and BFT are not 100% normal as he would have me believe, when he reads them to me there are mentions of a few imflammatory cells/ spots which he is dismissing as subjective and of no consequence.
He mentioned it may be a bacterial infection, too much bacteria there, or some kind of pustulation (nice). He will leave the joint pain to Rheumy since he himself it is not an expert however acknowledged that bowel disease can cause joint issues. He mentioned it may be down to Fibromyalgia, great, a disease that some don't believe in and as far as I know no hard and fast test.
He raised the possibility of treating it with another anti-depressant, which I wouldn't like since I tried that and was back years later when it wore off, who's to say the cycle won't continue if that is what he decides upon. Possibly anti biotics (which give me the runs at the end of the course more often than not!)
So to the next steps. Had more bloods, CRP again, Vit b12 and something strange that I don't remember. Pill Cam he wants to do to check for ulcers but found out that he'll have to apply to the PCT through a Nurse to get funding. And he wants to test the bacteria in my gut but the machine is broken and won't be fixed until end of April (please no info- I will look into this test if it looks likely I will have it- I do not want to know ahead of time!) He will get a second opinion on colonoscopy biopsies. So am being left hanging again. See him in a couple of months but the appointment won't be fixed for some time.
As well as not being able to live a life financial worries are pressing. In August (or possibly sooner) I will be re tested for disability benefits. They have closed the type I am on and introduced a tougher "medical" to pass, basically the Gov wants people off, regardless of whether you are sick or not. These "medicals" are done by a "professional" and the whole system is in most cases corrupt. The person who designed it admits it is flawed and not fir for purpose as does the MP in charge. ATOS have been taken through the courts in all the other countries they operate. Terminally ill, those with MS and brain tumours are all being found as fit for work under the new regime. People are actually dying while waiting for appeals to be heard. I need a diagnosis if i'm to stand any chance of continuing to get the benefit, even going to an appeal tribunal without a diagnosis would be uncertain.
So, Mum and I have talked and we will see where things are in May. If they are not far we will be going back to the Hospital to say enough is enough, help me and diagnose me or we'll be taking legal action.
I am now at the stage where I don't care if it's CD, or Lupus, or even cancer (which hardly is a possibility after all the bloods but got to consider these things), I just want to know, I am so damn tired of tests and being led round in circles!
He had not heard back from Rheumatologist (which is a shame since he at least is convinced it's IBD) and the Lupus antibody tests were not back yet (had to be sent to another Hospital as they don't do those there). Everything normal on the other ones apart from CRP which is now 36. One week it was 22 nd literally the next it was 36. While I am glad my bloods finally confirm I am worsening this is worrying- it has been 22-25 every time for 4 years now, with only a blip of 27 when I had an ear infection.
He's had a second opinion on the Barium images which has been agreed is looking normal. He had a confrence with 3 GI's and 2 Radioloigist's about my case. A repeat WBC scan (my only abnormality apart from bloods) was vetoed due to the radiation exposure and my age, they did not feel it neccessary to have it repeated.
I did feel we kept going round in circles with the "60% of cases of CD are found where you have been cleared, but nothing in medicine is 100%, your bloods are not showing other abnormalities, but CD can be anywhere" etc etc. Telling me I had an Irritable Bowel wasn't terribly helpful since yeah I guessed that 5 years ago, the cause remains uncertain, nor that I had to learn to live with it, since i did and then got a whole lot worse.
I also find that the reports on scope and BFT are not 100% normal as he would have me believe, when he reads them to me there are mentions of a few imflammatory cells/ spots which he is dismissing as subjective and of no consequence.
He mentioned it may be a bacterial infection, too much bacteria there, or some kind of pustulation (nice). He will leave the joint pain to Rheumy since he himself it is not an expert however acknowledged that bowel disease can cause joint issues. He mentioned it may be down to Fibromyalgia, great, a disease that some don't believe in and as far as I know no hard and fast test.
He raised the possibility of treating it with another anti-depressant, which I wouldn't like since I tried that and was back years later when it wore off, who's to say the cycle won't continue if that is what he decides upon. Possibly anti biotics (which give me the runs at the end of the course more often than not!)
So to the next steps. Had more bloods, CRP again, Vit b12 and something strange that I don't remember. Pill Cam he wants to do to check for ulcers but found out that he'll have to apply to the PCT through a Nurse to get funding. And he wants to test the bacteria in my gut but the machine is broken and won't be fixed until end of April (please no info- I will look into this test if it looks likely I will have it- I do not want to know ahead of time!) He will get a second opinion on colonoscopy biopsies. So am being left hanging again. See him in a couple of months but the appointment won't be fixed for some time.
As well as not being able to live a life financial worries are pressing. In August (or possibly sooner) I will be re tested for disability benefits. They have closed the type I am on and introduced a tougher "medical" to pass, basically the Gov wants people off, regardless of whether you are sick or not. These "medicals" are done by a "professional" and the whole system is in most cases corrupt. The person who designed it admits it is flawed and not fir for purpose as does the MP in charge. ATOS have been taken through the courts in all the other countries they operate. Terminally ill, those with MS and brain tumours are all being found as fit for work under the new regime. People are actually dying while waiting for appeals to be heard. I need a diagnosis if i'm to stand any chance of continuing to get the benefit, even going to an appeal tribunal without a diagnosis would be uncertain.
So, Mum and I have talked and we will see where things are in May. If they are not far we will be going back to the Hospital to say enough is enough, help me and diagnose me or we'll be taking legal action.
I am now at the stage where I don't care if it's CD, or Lupus, or even cancer (which hardly is a possibility after all the bloods but got to consider these things), I just want to know, I am so damn tired of tests and being led round in circles!
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