AWESOME read guys! I'm a brittle T1 living with NO pancreas! I was born with a very rare disease which basically digested my pancreas (Hereditary Chronic Pancreatitis), gradually I had parts removed by major surgery over 12yrs, until I had a total pancreatectomy (TP) 2 1/2yrs ago, which is when I became full-blown T1 (was classed as a 'partial D' or T1.5 for a year or so previous to last big op, was on BI shots & Gliclazide pills). I did DAFNE & became a sponge at everything D & picked up carb-counting VERY quickly & successfully, even at guesstimating lol!
BUT, with brittle D & living without a pancreas throws me all sorts of issues & complications, even though I've always done everything possible to prevent them, I'm strict with BG testing (up to 10times p/day, ratios & trends, BI changes, do multiple corrections p/day, often with zero budge in my erratic high BGs
). My pancreatitis STILL causes major issues & am still on multiple meds including pancreatic enzymes every time I eat/drink as I can't digest any foods or fat without them, also suffer from 'daily 'memory pain' & attacks, BAD steattorea, daily vomiting (espec with meals), not to mention depression etc.
I have Gastroparesis which they believe is a result from long-term prescribed opiate & pain meds for most my life + all the major surgeries I've had + D. Eating with pancreatitis has always been an issue (& extremely painful, often going days/weeks totally nil by mouth) in itself, but now with D AND GP it's even worse b/c at times I HAVE to eat to maintain/raise BG-even when I can't keep anything down, then when I do eat it often sits in my stomach undigested for many hours/days due to Gastroparesis (GP) before I regurgitate/puke up undigested food from 2days ago, so as you can imagine my BG will drop after my shots due to undigested food & not being absorbed, then depending on how friendly my stomach wants to be my BG will sky-rocket hours/days after once it's digested :/ so for 'safety' reasons I HAVE to do my shots 1/2hr or so AFTER I eat/drink, its a CONSTANT battle.
My other health problems are enough to 'try' & handle, but the many other factors are making it near impossible, depressing & I feel extremely deflated & hopeless. After just 2 1/2yrs I already have D-related complications (Some I had after just a matter of months
but I don't wish to discuss on public boards) which terrify me. I get ketones often & lost well over 4stone post-op, & despite having high-carb diet including upto 5 Ensure build-up drinks p/day I STILL can't gain any weight, let alone maintain it.
My immune system is utterly shot & I get every germ going & treated/tested for multiple infections from kidneys, bladder, nasal, oral, dental etc several times p/month! Don't even talk to me about thrush lol, I've been treated every single month for almost 3yrs for oral thrush, which takes a hammering med-wise & just creeps back again a week after treatment, I've had it so bad for so long & so stubborn that the Staph bacterial infection took over the oral thrush, & last time the swab lab result couldn't even determine exactly what it was!! :/
My Hba1c has been creeping up every couple months, I also haven't had any hypo-awareness in the whole time I've been full-blown T1 (on QA) & have to have someone watch over me as much as possible, I've tested in past with NO hypo-signals & BG was 1.3 & even 0.7mmol, which I didn't think was possible to still be conscious that low. Fortunately my GP agreed to prescribe me 10 test strips p/day as I'm 'at risk', & 9 needles p/day due to corrections, ouch my tummy & legs are solid now even though I rotate sites!
I was on a vast cocktail of strong painkillers, opiates & meds for my CP but I reduced most & feel better for it physically & mentally, although still suffer daily with all symptoms, but the slightest stress or flare in my other health probs sends my BGs manic & I end up unresponsive to insulin & corrections, one min I'm resistant, the next I'm sensitive, even on fasting days & after carb-free meals (cheese omelette, or bacon & eggs) my BG STILL leaps & often doubles, which 'they' believe is the undigested food from previous meals/days sneaking up on me.
My DN has told me from day dot of diagnosis that I'm top of the list for qualifying for insulin pump therapy due to not having a pancreas, I didn't know much about pumping at the time & wanted to 'try' & come to terms with MDI & carb-counting first (I'm beginning to believe there is no coming to terms with D?!
). After a LOT of research, meeting users & learning how much I could possibly benefit I decided the pump was worth a shot (no pun intended
) & the option's always there to return to MDI, BUT, after speaking to my GP & having friends who have been declined I was told that thanks to the new government & cost-cuts; pump therapy is no longer offered on NHS in England!!
SURELY pumps are far more ££-friendly & health-friendly than MDI & multiple on-going drs appts, tests, meds to treat this & that caused by D?? I'm absolutely devastated as I haven't been able to work for many years due to my life-long health probs so obviously would never be able to even buy a pump, let alone supplies, I'm not saying I'm 'entitled', but you'd think the govt/NHS would realise the overall benefit for such cases, not just for me personally/physically or other D, but for THEMSELVES, if my body carries on the way it is (which has cost the NHS £££££££ already in just 2 1/2yrs of D alone), just imagine how annoyed they'll be after 10, 20 or another 30yrs of expense toward my D-care?? I feel enough of a burden as it is. D is for LIFE, & I wish adequate help & support was available for ALL to make it easier for the sick & suffering, EVERYONE'S entitled to a healthy life, unfortunately politicians in power only think about the NOW or next few months, not the next 5yrs, there's no quick or easy fix, if only...
Apologies for the ramble :/
