Problem after problem after...yep...PROBLEM!! :/

[JemmaDawn]

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 (AMAZING! I believe it should be compulsory, espec for youngsters) & 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...

Sincere apologies for the ramble :/

Does anyone else suffer with multiple issues that interfere with your D, regime, BGs, moods & vice-versa? & if so, did a pump help you in ANY way?
My BIGGEST fear for the now/today is: my non-existent hypo-awareness, I'm scared to even sleep most nights 'just incase'.
My biggest future fear is: long-term complications, which I'm told by many CAN be prevented/some reversed through pump therapy. I feel as though I'm at my wits end with this on-going catch22 cycle, & when correction shots don't even shift my erratic high BGs it worries me even more.

Thanks so much for listening & being there, your support & insight is VERY much appreciated

 

[mrman]

Hi, first off no apology needed, not a rant at all you seem like a very strong willed individual. So sorry to read all the extra problems you have on to of diabetes. Can't offer much help as I am fairly lucky I only have type 1 diabetes and like you took like a duck to water as far as mdi and carb counting. It is disgusting that there are better ways for diabetics to receive help yet continually refused down to cost. Pumps available but not offered to all. test strips limited to some , I'm 1 of the lucky ones not had a problem with strips. Also cgms available but very hard to get unless you self fund. If anyone should have everything possible I think you and similar people should be top of the list. I'm sure at times you feel like banging your head against a brick wall, but keep nagging everyone possible. Good luck

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[phoenix]

You don't need to apologise for your rant.
Pumps are funded in the UK and people are still getting them (indeed I read of someone only today who had been given the go ahead) The guidelines are relatively clear and according to input (see below)

If a diabetologist recommends insulin pump therapy, a PCT cannot refuse to fund insulin pump therapy on grounds of cost. PCTs are also not allowed to create “waiting lists” for pump therapy. Anyone who has heard from a PCT employee rather than a practicing doctor that he or she is not eligible for a pump, or who has been placed on a “waiting list” to begin insulin pump therapy, is invited to contact INPUT for advice

It would be a good idea to contact them. They know all about the ins and outs of getting a pumps in the UK and I know have helped others.

There are only a few people with NHS funded cgms in the UK but I know of one young girl who also has no pancreas and has an NHS funded one so at least there is a precedent. Input can also advice you on this.
http://www.input.me.uk/about-input/

 

[Adele99]

Sorry to hear what's happening. I've got intermittent gastroparesis caused by autonomic nerve damage, some days it works or works part of the day, others it doesn't. so never know where I am and have Brittle diabetes as a result. Certainly nowhere near as extreme as yourself, and the digeston deays are only for hours but even so it is very difficult to achieve steady BS levels even with the type I have.

I really never know what my BS level will be before I check it which I also do umpteen times a day. Today ,I've had 3 low blood sugars as a result, went to bed at midnight with a BS of 9 and at 1.30a.m. woke with angina and leg cramps (due to long term complications) and a BS of 28.9. Waiting for some fast acting to bring it down. Don;t have full awareness of LBS aso due to auto nerve damge , so can really sympathise with your night time problem. I just hope for the best and know with my OH aware of this problem , things should work out ok in the end.

With severe circulatory problems I find the high BS's harderto deal with than the low ones now.

After having a quick read about the pumps I wasn't sure in my case it would help that much, as I' thought I'd still need to constantly change the dose, and have had some disastrous results when in hospital on an insulin driven pump and drip. But could just be my lack of knowledge on the subject.

Was wondering if there was some grant funding you could access if the NHS won't supply one. Are you under 25? There are grants available from certain charities for people under 25 to buy things to enable them to achieve their potential in life, and a carefully worded application to one of them may get you the pump you need. there may be grants avaialble for older people too, I'm not sure.

If not and you feel it would make a huge difference , I'd ask family and friends to start fundraising campaign for you. Get some publicity in your local paper saying why this device would make such a difference to your life. If the NHS can't help which is mad I agree , then you're maybe going to have to help yourself.

 

[VickiT11979]

Phoenix is quite right, funding is still available for insulin pumps, it hasn't been withdrawn. You must be under a hospital diabetes team surely - it's them that approve you for a pump & then the PCT HAS to fund it. So bring forward your next appt or get in touch with your diabetes specialist nurse & ignore your GP - they don't get any specific education about pumps (I know cos I am one). It may take a while - in my area that's due to there only being 1 "pump nurse" at the hospital who can train people how to use them & too many people needing training - in fact she gets referrals from Carlisle (to Newcastle) because other areas are even slower, but that then increases the wait in Newcastle :roll:

 

[lollyann1]

Hi

I had a partial Pancreatectomy a few years ago. No Pancreatic function left whatsoever now so am so called T3 Diabetes. On large amounts of Creon but still have Steatoreah. Take as much exercise as possible but since surgery muscles have weakened considerably. On Novorapid and Lantus. Insulin resistant. Try to take it in my stride and I think you are quite entitled to rant. It would probably do me a lot of good if I ranted!

I do hope you get the pump sorted you have a lot to cope with and I know it is not easy having all the surgery. My blood supply to my Spleen was cut off during surgery! Therefore my Spleen is dysfunctional so I have to take Penicillin each day for life. I have not had too many infections, but could really do with less Chest infection, obviously, not a good road to go down.

Good luck