Newbie qith type 3c diabetes

[Galli]

Hello

I'm 33 years old. I was well up until 2015 when I had gallstones. One got stuck in my pancreatic duct. I had surgery to remove my gallbladder and the loose stone. Unfortunately I already had acute pancreatitis. Few days after surgery I became unwell. A CT scan showed I had a pancreatic pseudo-cyst. I was discharged saying that the my body should reabsorbed the fluid and the pancreas will calm down. 3 weeks later I was readmitted. A ultrasound showed the cyst had grown to 30cm in diameter and was restricting my bowel stomach and left kidney. Plus my pancreatitis had got alot worse. My amalaze was over 700. I had a picc line put in to start feeding me as in past 3 months I'd lost over 4 stone. I was nil by mouth for 17 days. But unfortunately again things got worse. The cyst became infected and ruptured my spleen. I had further surgery to embolise my splenic artery. My body went in to retention so had a catheter, NG feed tube for medication and fluids. TPN feed thru the picc line. I got transferred from the hospital to a more specialist hospital. After 10 weeks of getting me out of danger I had a 17 hour operation to drain the cyst detach it from organs and connect it to my bowel. This was successful and after a week or so I finally started getting better. Bare in mind this started dec 2014 and this operation was July 2015. Got discharge got home started adapting. October 2015 I had bowel surgery for an obstruction caused by the cyst and scar tissue.
My pancreas has never really recovered. I have stage C pancreatitis. I get weekly flare ups that last days.
March 2018 I became diabetic started on metformin but this only aggivated my pancreas and it started to digest itself. I have sphincter of Oddi dysfunction.

October 2019 I started Tresiba Insulin 35 units a day. I take 75000 units of creon 3x a day and 25000 with snacks. I still have really bad digestion issues. I have just been diagnosed with BAM which is bile salt malabsorption.
I take 32 tablets a day and the liver medication sachets plus insulin. But I still feel awful I can not get my BG to a nice level 17ish seems to be the lowest. I have gained a lot of centralised weight. I'm really frustrated I'm depressed and exhausted

 

[eggyg]

Hi @Galli. I have answered your post on the General Messgeboard. Wish I’d seen this first! It has answered some of my questions, especially the Creon bit! I am so relieved you are on those. I also had a puesdo cyst on my pancreas after the pancreatitis/ gall bladder episode in June 2001. I had this drained at the same time as an emergency gallbladder removal. I lost 3 stones in six weeks and have never felt so ill in my life, even including removal of two thirds of my pancreas and spleen in 2007. Fortunately after two more acute pancreatitis attacks I don’t suffer now and I’m in generally good health. Self isolating obviously as a spleenless diabetic I tick two boxes! I feel for you as I know the pain and nausea you are feeling is just the worse thing in the world and you do think it’s never going to go away. I’m 19 years in now, I am 60 in two weeks and it’s now hard to believe I really thought at one point I wouldn’t see my 42nd birthday, let alone my 50th and now my 60th. I think the best thing I can suggest is that you push your HCPs for more info, short acting insulin, a carb course, even if it’s online or over the phone. Be bossy, pushy, bolshie and don’t take no for an answer. You know your own body better than anyone. You will get through this, it may not be tomorrow or next week but with the help on here and your doctors/ nurses it will be sooner rather than later. PM me, if you wish, if you’ve any questions you may not want on a public forum. Elaine. Edited to add. You can take as much as you want, you can’t overdose. I would up your Creon if you’re having digestive problems. I currently take 150k for breakfast, 125k for lunch and dependant on what I’m having for an evening meal anything between 125/150k.

 

[Galli]

Thank you Elaine.

I'm Tina. 🙂

It seems like my story is very similar to yours. I also take penicillin V for the no spleen bit. But do you find that irrates your bowels?
I'm not as good with the creon as I should be I was worried I'll take to much. So thank you for clarifying that for me!!
Is it because of the diabetes that I cant seem to heal very well and get sore skin that takes weeks to heal. Really dry mouth and feet all the time aswell.

I'm going to ring the GP surgery now to get the diabetic nurse to give me a call. I'm going to try and learn as much as I can. There seems to be lots of learning tools on my home page for me to watch and read.

I was offered to go on a course but was told it was only for type 2 diabetes and they only offer the course for type 2. Even when I've had attacks and ended up in a ambulance as soon as i say type 3c they say oh iv never heard of that I'll put it down as type 2...... I think some education for everyone would be helpful hehe 🙂

 

[eggyg]

Thank you Elaine.

I'm Tina. 🙂

It seems like my story is very similar to yours. I also take penicillin V for the no spleen bit. But do you find that irrates your bowels?
I'm not as good with the creon as I should be I was worried I'll take to much. So thank you for clarifying that for me!!
Is it because of the diabetes that I cant seem to heal very well and get sore skin that takes weeks to heal. Really dry mouth and feet all the time aswell.

I'm going to ring the GP surgery now to get the diabetic nurse to give me a call. I'm going to try and learn as much as I can. There seems to be lots of learning tools on my home page for me to watch and read.

I was offered to go on a course but was told it was only for type 2 diabetes and they only offer the course for type 2. Even when I've had attacks and ended up in a ambulance as soon as i say type 3c they say oh iv never heard of that I'll put it down as type 2...... I think some education for everyone would be helpful hehe 🙂

Hi Tina. I was treat as type 2 until two years ago. I nagged and nagged to go on a DAFNE course. Carb counting. Could be a different name in your area. I think they got sick of me in the end! It was the best thing ever. I have now been re categorised as Type 1 to enable me to access the services I may need in the future. Of course I’m not a “ real” type 1 as I’m not autoimmune but it’s just a name. The NICE guidelines specifically say that Type 3cs should receive the same treatment as a Type 1. Lets face it , our pancreases are knackered how do they expect them to produce insulin? It’s not rocket science! I think you’re doing the right thing in small and often meals, oils and fats are my nemesis. That’s when I up my Creon, the only thing with a low carb diet is full fat everything is advised which isn’t good for us of course, but low fat products often contain sugar to make them tastier. It’s really a case of trial and error I’m afraid. I’m still learning and still get things wrong or “forget” somethings just don’t agree with me. Try lean meats, chicken, turkey, beef. Crackers are good, if you can get a high protein bread, I’m struggling at the moment with that, it has lower carbs but often more fibre which of course can be a problem. Stay clear of “ white” stuff, bread, rice, pasta. I can manage legumes, lentils, beans, chick peas. They have fibre but take a lot of digesting so they don’t tend to raise my BGs, but do in others. Again test before and after meals. It can be done, but it’s a marathon not a sprint. I will hunt out a post I put on here that tells my story. I hope it gives you hope. Take care and don’t forget keep in touch. Look at all the threads, including Off The Subject and Jokes and entertainment. We are more than our diabetes.

 

[everydayupsanddowns]

Glad you are getting some helpful support and information from the forum @Galli 🙂

Good to have you here! Keep asking questions and let us know how you are getting on 🙂

 

[trophywench]

Your type of diabetes is a lot more like 'classic' type 1, and bog all like type 2!

I very very strongly suggest because Type 1s in the majority of cases in England is simply not dealt with wholly by GP surgeries, that you do take Elaine's advice and contact your GP surgery asap - prior to 'this lot' I'd have said take yourself to A&E asap, but not now. Those of us who are dealt with normally in hospital diabetes clinics, have to get them to instruct our GPs to prescribe whatever we need in whatever quantities we need it. I think if you read the relevant NICE Guidelines and point your GP at them, that's best at the moment.

Also - DIY expert carb counting and dose adjustment for the fast acting insulin tuition can be got via an online course known as BERTIE online - see https://www.bertieonline.org.uk/

 

[Galli]

Hi everyone.

Today is my 2and day of really low carbs high protein diet. Already seeing small results BG was 14.3 earlier which is lower then normal. I'm stunned incredibly tired all the time but I know this will take time.

I spoke to my GP and she is going to get my Diabetic Nurse to call me at some point this week to start the fast acting Insulin. I said about the BERTIE course and she agreed it can be done that way.

I'm writing everything down. I have noticed a few slight crashes in terms of diet as brown bread rice pasta seems to agitate my pancreatitis but the white versions affect my blood sugar?

Thank you for all helping me with this. I really appreciate it 🙂

 

[trophywench]

I use the Uni Hospital Coventry for my diabetes care and the carb counting course offered there to all Type 1s is a 'live' course - but is firmly based on BERTIE. However those hospitals dong that and attending their own training at Bournemouth Endocrine Centre in how to deliver it to 'us lot' were obliged to call their own courses something entirely different. Hence it's called CARBS 4 1 - Coventry and Rugby something, can't remember. However - it's still BERTIE! Nuneaton Hospital, aka George Eliot hospital, call theirs GERTIE ! (and she was really called Mary Anne Evans anyway)

If at some time in the future, you get a chance to do an 'in person' course - do still go on it, cos stuff you learn from other folk along the way, will likely be helpful even if they are not the same Type as you.

You asked elsewhere about diabetic ketoacidosis, commonly known as DKA. It is a medical emergency because it can kill you if it isn't corrected properly pdq. Yes, you DO need a ketone testing meter - another fingerprick blood test needed any time your BG meter says you are above 13. Then you absolutely need fast acting insulin cos nothing else can sort it for you.