Type 1 and Pancreatitis

[SmileyB4]

Hi All,
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
Sxxx

 

[jules65]

Hi I had 'end-stage-Chronic-Calcified-Pancreatitis' ..... which after a rollercoaster ride of 4 years, living more in hospital than out and 6 major operations I have had what was left of my rotten pancreas totally removed and am classed as Brittle Diabetic. Many people have (lesser) forms of pancreatitis which is not alcohol related (mine wasn't either) and we chat a lot on a pancreatitis forum (of which I am a Mod) and a closed FB group. Message me if you'd like to know more

 

[mrspuddleduck]

@jules65 , saw your post. Have just pm'ed you
@SmileyB4, there's a few of us here with pancreatic problems. I've had both acute and chronic pancreatitis but my pancreas is now dead, calcified and necrotic. We know what your going through @SmileyB4 so if there's anything you want to ask, or just scream we are here. Sue xx

 

[JRW]

I had one episode of acute severe pancreatitis, it destroyed most of my pancreas. Although my pancreas recovered in the short term, a couple of years later I was diagnosed with T1. I am a T1 in respect that I'm insulin dependent, but I'm not insulin dependent because of my autoimmune system attacking my pancreas, it's because my pancreas decided to self destruct. My point is that the two are linked, but I thought the pancreatitis comes before the diabetes? The pain you describe does sound like what I've had once or twice post my attack when the pancreas is irritated, or perhaps it is pancreatitis in it's chronic form, rather than the acute that I suffered. The acute pancreatitis pain is akin to childbirth I'm told, as a man I've not experience the latter, all I know is that it's the worse pain I've ever experience, and I've suffered multiple broken bones, morphine was my saviour.

 

[Shar67]

Hi SmileyB4
I am diabetic due to pancreatitis as well, another unknown cause as well, lots of people on the website and Facebook page are the same, but we don't judge how people came to get it only that we share our experiences and help newbies (a bit like this site)
www.pancreatitis-forum.org
Facebook UK and Ireland support group
Oh we are not type 1 either but type3c but as no one has heard of this it is easier to say type 1 (not all pancreatitis sufferers become diabetic)

 

[donnellysdogs]

Not pancreatitis.. But I do feel for you with pain and stomach probs..
I suffered years of pains in legs. In 2003 we paid privately to a consultnt who was more concerned with my hands and told me and my hubby it was palindromic rheumatism. At the same time I was diagnosed with pernicious anaemia by another consultant.

One thing from these consultants was never mentioned to my hubby or myself who went to both appts and all the tests... And that was that I probably had an intolerance to aspartame and sweeteners. (Being diabetic this is important!!)

We moved to Wales after this. Then 4 years later we moved to my current practice. This year as they kept saying to me that my info from Wales was limited I asked to see my GP Notes. They are entitled to review them before I sit with someone to review them.

My current GP practice found that in 2003 a note from a consultant was not entered on to the full GP notes... The aspartame and sweetener intolerance was never mentioned either to my hubby or myself.

I have had almost 20 years of chronic pain due to this....

My current gastroenteroligist also did a shapes test on me and found that I had slow colonic transit which is the cause of such dreadful bowel movements.

Both are pain and bowel/stomach linked and I so know how you feel...everybody kept telling me that pain in my legs was some sort of neuropathy, but not peripheral and my EMG tests were negative, all endoscopies etc were negative for stomach probs.. It was only having a good gastro chap who did the shapes test that eventually found the cause of the stomach probs..

Since totally giving up any sweteners my pain has disappeared. I know immediately now if I have any sweeteners or any artificial preservatives as I will have chronic pain return and also sleep talking and nightmares again!!

My stomach has been normalised from eliminating bread, pasta, rice, porridge, potatoes, celeriac and other foods from my diet and by adding in flax n chia seeds.

Diet can contribute wholly to problems with our bodies. I could have had 12 years free of pain if I had been told about aspartame and sweeteners etc...30 years ago we wee advissd to have sugar free foods which inevitably included sweeteners!!! (I have also had pernicious anaemia undiagnosed, fibromalgia undiagnosed, palindromic rheumatism undiagnosed!!)

I so feel for you and although I have no experience of pancreatitis I so hope you can find a way with food choices to help you.I don't know if you have any foods with artificial ingredients in.. But even removing these, if you do- may help. There are no rests for aspartame, artificial sweetener, artificial preservative intolerance). Its just a case of avoiding and see if it eliminates pain...

So wishing you well as it is horrible to suffer....