Hello
I'm a 47 yr old male, married with 5 kids and living in the rep of Ireland , I've been very sick all my life and doctors all over Ireland could not find out what was wrong, even tho I was bleeding from my mouth and anus, some doctors had the cheek to tell my parents that it was all In my head and that I needed to see a psychiatrist to help me, things really got bad one night , on the 30 June 2001, I started bleeding very badly from both ends , I could not breath properly and I collapsed, my wife got an ambulance and it took me the 70 miles to hospital, my blood pressure was thru the roof, my temp 105, etc
Thankfully the surgeon on call worked at St marks hospital in London for a while and he had a suspicion straight away what was wrong but would prefer if I was sent to London to confirm his diagnosis of which he would not tell me, I was in London the following day where proff robin Phillips diagnosed me with familial polyposis adematotous Coli with gardners syndrome, without surgery immediately I would of dying within a month, after the surgery which was a panproctocolectomy, I was left with an illeostomy after my anus, sphincter muscles, large bowel was all removed, it took a long time to recover to the stage that I had some bit of quality of life, things got bad again when 2 years later I was diagnosed with 6 intra abdominal desmoid tumours, after the. 16 hour surgery they had to remove all my small bowel leaving only 60cms, they removed 3 desmoids and a 3 stone tumour that was one foot in diameter and 8" deep, since then I've had no quality of life , I'm in constant pain and have to self catether all the time,I had a TPN line inserted as I was losing wait badly but 6 months later that was removed in 2012 after suffereing a heart attack after getting an infection and a 12" clot developed, one of the desmoid tumours is on my right femoral artery in my thigh. Which causes restricted blood flow to the heart , after suffering chronic more bad pain lately ive been told I have calcified opacities consistent with phlebolithsofer rt internal pelvis, I was diagnosed with diabetes last year, I'm waiting to go on the organ transplant list to get about 6 feet of small bowel inserted, and a femoral artery to replace the damaged one on my right thigh once the tumour is removed, ive been told ill be paralysed on my right leg because they have to cut the nerves to my leg to get out the tumour I'm been told nothing and I'm worried as hell, what is this new diagnosis and how will it affect me? I also have fibromyalgia and clinical depression,I've been told that without further surgery my life span is less than 5 years ,
I'm on OxyContin 200 mg daily
3 x 600 actig daily
2 x 400 actiq daily
45 mg mitrazapine
30 mg dalmane nocte
300 mg lyrica twice daily
20 mg LEXAPRO
And a host of other tables but these are the main ones,
Can you please answer my questions about this new diagnosis because the pain is unbearable and they can't up my meds cause of what I'm already on.
You have my email and I would really appreciate an email from you PLEASE
THANK YOU
JOHN CALNAN
YYYY@YYYY