Hi - some of you may have seen my recent posts on Living With Breast Cancer, and my current problems with elevated white cells, low red cells, and Crohn’s strictures and inflammation. I am convinced, after having had Crohn’s for 40 yrs, that my current problems are not Crohn’s initiated as my current problems are not anything like previous flares. I am concerned about bc problems.
From May this year I have constantly lost weight, now down to 6st 10 lbs…dreadful lower abdominal pain as early as 4 am, only relieved by a bowel movement…ulcers in my oesophagus, significant inflammation in my terminal ileum. Hip pain, balance unstable, and vision problems. I am living on 4 bottles of Fortijuice a day, and small amounts of mashed potato, apple sauce etc. No solids.
Saw my gastro on 14th October…he told me I need a small bowel resection due to inflammation there, and stricturplasty on some narrowings in the small intestine that no meds can sort out. Fine… I asked for an urgent private appt with his designated surgeon, whom I met briefly at the Crohns/Colitis AGM in Plymouth in July, when my gastro introduced me to him, and pointedly said: “Liz, you will be seeing a lot of Mr. Dourie in the future!”. I made a swift retreat.
No action, so yesterday when I went for my normal monthly blood tests for methotrexate (which I have been on for 8 yrs, even before getting breast cancer 5 yrs ago) I asked my GP’s nurse if my gastro had written to my GP, as I had specifically asked to be copied. She got my computer notes up, my gastro had written to the gastro surgeon and copied my GP. I asked for a copy of the long letter and she said she couldn’t give it to me without the GP’s approval and said she would speak to him… a really lazy GP whom I have no confidence in whatsover, either for bc or Crohn’s. Living in such an isolated Fort in South East Cornwall, I really have no option, other than driving 12 miles to the nearest town, with no car parking, and I can’t walk far now.
When I got home I rang my IBD nurse and she said she would look into it. Today she rang me and said she cannot not only locate the letter from my gastro physician to the gastro surgeon, but can’t locate my file. I don’t believe it, unless they are utterly incompetent. She said she had been to see the gastro surgeon’s secretary today (a temporaray one as his permanent one has been off sick for ages - doesn’t surprise me with the current chaos in the NHS) and she will see the surgeon today and get me an appt urgently…if I don’t hear within 2-3 days I am to ring her back. She knows my blood tests are all out of range, has seen the MRI and CT scans and is really supportive.
I am upset, confused, and very worried as to what is going on. I don’t understand why no-one will give me a copy of my gastro’s recent letter to the surgeon. What are they hiding? The receptionist at the GP’s office yesterday said they and the nurses all had to go on a recent course relating to what they could, or could not, tell patients. Something about what Consultants tell GP’s and some patients may not be able to handle it. Yikes!!! I probably know more about Crohn’s and breast cancer than my useless GP…I just want to know what I am dealing with, and want it fixed pronto. Gastro said I cannot have the surgery done privately at the Nuffield in Plymouth as they don’t do “complicated surgery”.
Even with the smallest amount of food, I am in excruciating pain, so guess the mind comes into play, and I don’t even want to eat. I have spent a fortune this last month on size 8 clothes, and wonder now where I can get size 6!!
My gastro has said numerous times that he will not prescribe the newest anti-TNFa monoclonal drugs for Crohn’s as I have had breast cancer. But…has also told me many times that I am at risk for lymphoma due to long term methotrexate. Bit of a Catch 22.
How do I get access to this recent letter detailing my current situation? I do feel I can cope with anything medically, I just need to know. My gastro said I am looking at 7-10 days in hospital, then 6-8 weeks recovery and I need to make some domestic arrangements with our holiday apt here. My husband is 80 yrs old and can’t do it, but if I have enought warning, I can get some young women to handle that.
Anyone got some advice? Gratefully received as I am doing my nut!
Love,
Liz.