My perspective is mostly complaining about how much I hate my sliver o’ pancreas and how there’s so little information about us T3cs; many doctors don’t know what it is. And having a way to flag myself as a T3c would be awesome.
I think T3C may be worse than T1 and/or T2 because at least in the other two types, the pancreas still functions to produce the other important enzymes and hormones that help break down foods and other things, but in T3C’s…if you have no, or little pancreas, those enzymes / hormones aren’t capable of being produced either!
Are you on medicines or therapy that somehow allow your body to produce those important enzymes and hormones?
Glad you joined us and this community supports and aids each other (even if it’s just being there for a listening ear) where possible.
I take supplemental digestive enzymes with every meal. It’s basically very expensive ground up pig pancreas with an enteric coating so it makes it into the small intestine. My first order every year basically meets my deductible.
I am at a higher risk for malabsorption of fat-soluble vitamins–A, D, E, and K–but that doesn’t seem to be a problem, currently. I’m supposed to eat a low fat diet (in addition to low carbs and low sodium), so I’d say I’m eating cardboard, but I’m also supposed to eat low residue, which limits fiber. I find it, ah, challenging to manage all those different aspects of diet, so I’ve been focusing mostly on the carbs side of thing so I can figure out all my ratios.
My main problem is that when I first got ill with gallstone pancreatitis, my initial medical team mismanaged my case and gave me too many IV fluids and then sent me home with 50 lbs of water weight, which then caused a cascade of other issues which lead to the necrosis.
By the time my beloved GI doctor arrived on the scene, the damage had been done. The infection from the necrosis destroyed the veins in my abdomen, which means I have portal hypertension and recurrent ascites which I have to get drained periodically–I average about 5L each time. The excess fluid has caused a truly impressive umbilical hernia, which will have to be surgically repaired at some point. I also need my gallbladder removed and probably my spleen as well.
I am super fun at parties.
You sound fun even though you deal with a lot! Keeping an optimistic outlook is always the answer imo.
Yanno, I figure I have two choices: I can get on with things or I can roll over and die. There’s still a lot I want to do with my life, so dying isn’t an option.
Hell yeah! One of the funniest line of skits ever imo. Not as funny as More Cow Bell or Simma Down Now, but up there.
Michel is the only admin I think, I checked and cannot edit Tags, but I am sure @Michel will add Type 3c. You have it, so you should be able to flag it!
I think we do have one other member with Type 3 @SteveMann but he hasn’t been posting as of late.
We are unicorns!
Welcome, @eilatan. Glad you found this forum, but sorry for the reason. Hope you find good help and encouragement here.
I’m still here.
Reading eilatan’s first post, I had to read carefully because I could have written every word. Right down to the enzymes consuming my max out of pocket (insurance) by the end of January. (We switched to a high-deductible policy because of the fast burn through the deductible max, so every office visit or prescription is paid 100% for the rest of the year).
I recently did an inventory of my medications. I take 39 pills a day at mealtimes. But you get used to it.
Eilatan- it does get better.
Getting on the G6 was the best move I made. I have been able to learn how different foods affect my blood glucose levels, and how quickly. It’s not just counting carbs for us 3C’s. For example, a couple of Hershey’s chocolate nuggets barely budges my BG, but 28g of cereal or bread shoots it to over 200 in a half-hour. And an hour later, I am back to 100.
I was planning to go on a T-slim pump this year, but with the Coronovirus threat, I don’t want to go to the insulin clinic in the hospital.
Like I said- it gets better. I almost feel normal again. I can even tease my wife when she orders dessert and feels guilty: “Enjoy your dessert, you still have a working pancreas.”
Oh, by the way, my Necrotising Pancreatitue with pancreatic debridement happened in 2007.
I’m glad to hear it gets better, @SteveMann. Tomorrow is my 2 year anniversary of getting sick, so I’m definitely up in my feelings right now–I’ve had a lot of traumatic hospital experiences over the last two years.
Right now my single biggest issue is the destroyed veins, which are causing fluid build up in my abdomen, which really doesn’t help the hernia–90% of the time these days, that’s what hurts. I’m supposed to watch how much fluid I drink but I’m also on massive doses of diuretics, so.
My GI doctor–who I totally believe saved my life, my first medical team was a group of surgical residents and it took them a week to notice my pancreas was eating itself–keeps telling me that is does get better, but it’s very good to hear it from someone who’s been through it first hand.
Welcome to the forum, @eilatan! We’re glad you found us
Thanks for the reply and info. Until now we would pride ourselves with raising a ‘free range kid’. Wile this is still possible, he can only roam free with a sensor attached and glucose tablets in his pocket. Surely there are worse things in life though.
Hey Andre, welcome! I was diagnosed when I was 11 too. I am 15.5 now, and I have been on the forum since I was 13.
I am sorry that your son was diagnosed. He should know he has no limits. T1D does not define or limit him or any of us. He can be whatever he wants. I do any sport I want, or any activity. I have spent lots of time traveling and going places. I have overnights with my friends. I have hiked in many countries. I spent 2 weeks traveling in Costa Rica without a car and almost a week hiking in the jungly part of the country, then over a year in Europe, going from country to country (with my parents). Last Xmas, I also spent 2 weeks visiting friends on my own in Europe, and skiing every day. I used to play soccer in a team, then I spent 3 years on a swim team. Now I surf, I run cross country, and I train most every day. It just takes work and determination, more work than glucose normals, but not more than we can do.
Hi @AravConnor, welcome!
How long have you been diagnosed?
Hi Kaelan,
thanks for the nice message. Just what I needed to hear, and what my son needs to hear. He’s doing quite okay so far, just the occasional frustration with the “body not working as designed”. I will print your response for him. Your activity level is quite impressive, regardless of diabetes or not. I daresay some glucose normals would do well following your example Also pretty cool that you joined here and took the bull by the horns. Very inspiring.
Cheers, ~A
Hi, I’m Carrie and am a 20+ year T1. I live in Colorado now but have managed my diabetes living on 3 different continents including having one of my babies overseas. I have a very supportive husband and two wonderful kids. I’m currently a TSlim pumper however like the occasional pump break. My aunt, also T1, told me how great this group has been for so and I’m looking forward to the community here and getting new and fresh ideas!
Hi Carrie, welcome!
Welcome @jbcb03! really glad you got referred to us, and you should find us a bit mangy, but friendly none the same. Ideas! We have ideas, and hopefully you will find some of the not too crazy ones. We for sure have crazy ideas here as well, but it all depends on what you are looking for. I have a lot of family in the Denver area. Lovely place.
Hey, sometimes crazy ideas work!