A few months ago I went to see my diabetic specialist (She's been my specialist for the last 15 plus years). She did some tests for me because I had had stomach problems for years and it came back as having severe pancreatitis.
I wanted to post on here about this because.... on my 10th birthday (to the day!) I was diagnosed with type 1 (32 years go), when I was 17 years old I began to struggle with really bad upset and stomach/back pain. I lost SO much weight and when I was down to less than 5 stone, I began to get the worst leg pain and sleepless nights ever! I was diagnosed with diabetic neauropathy and was given tons of meds to get over the pain and help me regain weight. I remember my diabetic specialist at that time made a comment how unusual it is to get neuropathy at such an early age, but I was obviously given the run down of how important it is to look after your diabetes. I was a teenager and wasn't doing a brilliant job of it..... but I did suffer from severe depression afterwards.
My stomach never recovered, but I did gain weight and my leg pain went away when I did.
As the years have passed, my stomach/back pain has got worse, the doctor did tests and it came back that I had kidney stones, so I put the pain down to the kidney stones. But when I described the pain the the Urologist, he questioned me about it, he said it sounds more like muscle spasms? I dismissed his comment because there are day I can't move because the pain is so bad!
Eventually last year I explained to my diabetic specialist that I can't go on with such a bad stomach.... still assuming the pain was my kidney stones. She referred me to a gastro chap who told me it was still my neuropathy and to start looking after myself! I was really upset because my Hba1c hasn't been higher that 7.5% for the last 15 years! My diabetic specialist also agreed and said she didn't think it was neuropathy either.
Well, it came back as severe pancreatitis.... which is apparently not unusual for type 1 diabetics with immune deficiency.
I am really appalled that for all these years I've struggled with the pain and a bad stomach that there was medication I could've taken, a diet I could've followed.... if it had been caught earlier, I wouldn't have all the problems I've had with being anaemic, low calcium.... and being targeted my the doctors that I have neuropathy! Will they ever even remove it off my notes that I didn't have neuropathy? The pain I had when I lost so much weight IS apparently nerve damage because you have lost so much weight! Apparently it's quite common in anorexia?
Has anyone else got pancreatitis? I'm struggling to find anything about pancreatitis that isn't due to over indulging in alcohol (I've never drank).
Would love to hear others who have been through similar?
Thanks for listening