Totally Lost

Status
Not open for further replies.
B

belfasthammer

New Member
Relationship to Diabetes
Type 3c
I don't know where to start. About four years ago I lost over 7 stone through Slimming World . I felt great. My energy and well being were excellent. In September 2018 I was rushed to the hospital with necrotising pancreatitis. My body went into shock and I was on life support and in a coma for over a week and in hospital for over three months. I was told my chance of survival was 8%.
When recovering I had numerous hospital stays for pseudocysts, removal of debris, inflammation and other complications. I was diabetic through pancreatic damage and need to take Creon to eat meals. About a year later. I had more of my pancreas removed and this stemmed the flow of constant hospital stays. The thing is I am lost I tried for years to stabilise my BS and I have been largely been unsuccessful. I get depressed and just eat anything, yes even the stuff a diabetic shouldn't. My mental state and energy is terrible . I sleep for hours during the day but not great at night. I love my family but they don't seem to understand the mental and physical struggle and by and large think I'm doing ok but I know I am notI get very little medical back up. My consultant appoint was changed seven times and eventually happened by phone. I constantly worry and resolve every day to have a new start . I am hoping someone on here can give me insight or possibly today I am feeling more sorry for myself than usual If you knew me you would know that I am not the sort to complain.
 
As you are Type 3c (due to damage to/removal of the pancreas) you are no doubt on insulin. If not it is not surprising that you are unable to regulate your glucose levels, since you need the beta cells to produce the insulin to enable you to do this.

Assuming that you are in insulin (if not then ask to be put on this) which insulins do you use? This information will help us to give more useful responses to your questions. Most will find it easier to use both a basal insulin (to deal with the glucose your liver is dribbling out to keep you going) and a bolus insulin/quick acting insulin to deal with the glucose from the carbohydrates you eat. On this system, once you have got the hang of it, you should be able to eat whatever you want, whenever you want to.

Come back to us with info about your insulins if you are happy to do so, and any other questions that you have. There is a wealth of experience to tap into on here, and no questions are considered silly. Just ask.
 
Oh my gosh you certainly have had a traumatic time and less than good support from your consultant. At least you have been designated as Type 3c which sometimes people in your situation do not and are labelled as Type 2 and have to fight for the support that would be available and be treated as Type 1 with a few differences.
There are several contributors to the forum who are also Type 3c and I hope they will be along soon, meanwhile if you look via the search (top right ) there are several threads with lots of discussions about managing your condition.
 
Oh bless you. You’ve really been through the wringer.

Have you done a carb counting course like DAFNE and do you know how to do basal testing? Let us know what insulins you’re on and roughly what sorts of levels you’re sitting at. If you’re carb counting and taking insulin then there are no foods that are off limits but there may be ways we help you to minimise spikes and crashes with them.

We’re here cheering you on.
 
I am on insulin novorapid and toujeo and take metaformin This has risen by three since first diagnosis Some of the problems are of my own making I think the mental side of illness and diabetes is often seen as a side issue. I just get disheartened about this and also the fact I have gained all the weight again.Listen they are my problems to solve and I am so very grateful that people took the trouble to respond That’s so decent
 
I'm not supriseds you're feeling low and and lost - you've been to hell and back. What an ordeal!

One thing I would say, though, is that though despite all you've been through, you did, most definitely, achieve a HUGE thing in losing so much weight (which I assume was much needed). I do, do hope that has 'helped' overall - in that, if you hadn't lost that weight, then it could be things might be even more difficult and problematic for you? (Hope I'm not getting hold of the wrong end of stick here)

I hope this forum helps you 'stabilise' and find a sustainable way to a nicer future for you now. Wishing you all the best - Cally
 
Welcome @belfasthammer
I'm another Type 3c caused by necrotising pancreatitis, with a long hospital stay (about 2 months in ICU and 6 months in hospital in total) so I know where you are coming from. It's been really hard work to get to the stage where I am now, and I'm still not back to where I was before the pancreatitis.
There are so many aspects to the recovery. For me different aspects of post ICU syndrome and a long hospital stay have been difficult to deal with. Lots of the issues that you mention are very familiar and it has felt like a very lonely journey at times.
Having said that, I'm still making progress, although it's much slower now.

Sorry to hear that you haven't had much support. I'm assuming you are talking about your diabetes team? Have you had any support from your HPB/pancreatic team with your recovery? They should be aware of the need for psychological support and might be able to point you in the direction of suitable help.

There are lots of us here to help and support you with the diabetes. Juggling Creon doses, carbs and insulin can be tricky and, as Type 3cs also produce less glucagon to raise blood sugar, management of blood sugar can be tough.
Are there any particular issues that you'd like help with at the moment?
 
Just to add - you should be treated as if you were Type 1 (with the added extra of Creon) so should have access to diabetes education such as DAFNE (which has already been mentioned). My clinic does their own course. If you haven't had access to this there is an online course, BERTIE, which is very useful.
Have you been given a CGM eg Libre?
 
Hello @belfasthammer,
Welcome.e to the forum and really sorry to hear its been tough going. I can't offer much help other than moral support; I'm T3c after a total pancreatectomy to get rid if a cancerous tumour, so I know very little about pancreatitis and the pain and distress from the steady progression of that disease.

A re you under a Hospital based Diabetes Specialist Nurse (DSN) and do you have a Continuous Glucose Monitor (CGM) such as Libre 2? You should be treated as if T1 and the combination of your pancreatitis as well as being insulin dependent, means your medical support is well beyond the normal remit of a General Practicioner. Your GP writes your prescriptions and supports you for more routine medical problems, but you should have direct access to Specialists for the pancreatitis and diabetes.

Do keep asking questions - there is a huge wealth of practical knowledge within the membership of this forum and hopefully we can provide you with ideas to help you regain some reasonable management of your diabetes and quality of life.
 
belfasthammer said:
I am on insulin novorapid and toujeo and take metaformin This has risen by three since first diagnosis Some of the problems are of my own making I think the mental side of illness and diabetes is often seen as a side issue. I just get disheartened about this and also the fact I have gained all the weight again.Listen they are my problems to solve and I am so very grateful that people took the trouble to respond That’s so decent
Click to expand...

Problem shared is a problem halved, your dealing with a lot in your life & many on here have been through same or similar experiences.

Creon user myself though don't have type 3c.
 
Hello @belfasthammer I have lived with the 24*7 struggle of blood glucose management and CREON dosage for 13 years since they took my pancreas to a better place in 2010. Every day continues to be a challenge as nothing is predictable, for example I take the dogs for a walk each morning, yesterday I needed around 50 extra carbs to get round, today my blood glucose stayed level, tomorrow it could just as likely increase........There have been 3 BIG STEP CHANGES in the 13 years - DAFNE where i spent a week in a room with "gnarled, old, experienced" Type 1's. This was a big eye opener as i had never met a T1 before so the discussions during the week widened my appreciation of carb counting, the impact of illness, exercise, stress, travel.....DAFNE is Dose Adjustment For Normal Eating - you don't need to make comments like food a diabetic shouldn't eat - I now eat everything and anything DAFNE starts to build your understanding of how to Bolus. The second step change was getting my Animas Pump after 4 years of MDI. In the first 4 years my consultant struggled to achieve a long acting / quick acting regime that worked. We tried multiple long and fast acting insulin with no success. Getting the Pump meant we only had to worry about one insulin type and it brought things under better control (a small drizzle of fast insulin works better than the slow insulin bell shaped action). The third step change was switching pumps to the Tandem with Dexcom CGM, it takes away a lot of the stress (should I finger prick or wait a bit....), the pump also makes some adjustment - its not perfect (see earlier dog walking comment) you still need to intervene - especially with the Tangtastics when falling - but at least you know. If I was you I'd send your diabetic consultant a copy of your post and ask for a meeting to discuss your comments, your quality of life, and agree a pathway that will turn how you are today into something closer to normality.
 
Status
Not open for further replies.
Back
Top