Pancreatectomy- type 3c

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Dunagree

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Hi
My daughter had surgery to remove a pseudo pillory tumour and her pancreas seven weeks ago and is keen to get in touch with anyone who has had a total pancretetectony that is doing well and recovered post surgery.

She hadn’t any medical or previous health issues before hand ( so there’s a lot of adjustment) and we’d be keen to hear from others on how they are managing their diabetes and creon.

Many thanks
Terri
 
Hello @Dunagree , welcome to the forum. It must have been an awful shock for you all. How is your daughter getting on now.
Sorry I can’t be of much help.
We do have a few people on here in a similar situation to your daughter.
I believe their is a Panceatitis forum but don’t know the address.
Lin.
 
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There are a few "creonistas" on the forum. Some of us still have our pancreases albeit in a non functional state. If she has any specific questions I'm sure someone will have be able to share their experiences.
 
Thanks to you both for your reply and suggested link. We’d be Interested in any advice / suggestions for newly diagnosed diabetes and also understanding what medical supervision (if any) is available or offered to others regarding monitoring the PERT with creon.

Thanks
Terri
 
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Dunagree said:
Hi
My daughter had surgery to remove a pseudo pillory tumour and her pancreas seven weeks ago and is keen to get in touch with anyone who has had a total pancretetectony that is doing well and recovered post surgery.

She hadn’t any medical or previous health issues before hand ( so there’s a lot of adjustment) and we’d be keen to hear from others on how they are managing their diabetes and creon.

Many thanks
Terri
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Hello @Dunagree late at night assuming you are in the UK. I`m really sorry your daughter is in the position she is in. However it will not stop her leading a full and active life as long as she and you as a parent take control of the whole situation. I take Creon every time I eat because the Pancreas does not produce enough of their own enzymes to digest their food so the gut needs help hence the Creon. Our revered medical professional @mikeyB will point you to the Pancreatic forum although I am a member I feel his knowledge is far greater than the average diabetic and can advise you accordingly. Please keep in touch daughters details medicinal wise would be a help but only what you're comfortable with. Take care Terri.
 
Hi Dunagree

As far as the diabetes is concerned, there’s a whole lot to learn, so it would be a good idea for your daughter to register on here for advice on Type 3c control from some of the Creonistas

But for controlling the symptoms of a lack of a pancreas from the diet and Creon dosage, the Pancreatitis forum is the place to go, because it can be a bit tricky to get right.

That’s at Pancreatitis-forum.org.uk

A few folk, like me, are on both. And learn from both.

You can’t read any of the posts on the Pancreatitis forum without registering. But as a place to find folk in exactly the same situation, you can’t do better. They’ve seen everything. And they are all just as friendly and welcoming as here.

The one rule to remember about Creon is that it isn’t a drug. You can’t overdose on it, nor can you stick to a fixed dosage. The correct dose is the dose that gives you normal bowel motions. That could mean a couple of 10,000mg capsules with a meal, or three 40,000 capsules. It’s trial and error, and most GPs have no experience of using it, to say nothing of seeing patients with no pancreas. It’s rare, so they never prescribe enough. Hence the need for the forum. A low fat diet helps with symptoms.

Most people on the Pancreatitis forum avoid alcohol like the plague to avoid further damage to the pancreas (or further episodes of acute pancreatitis), but that doesn’t apply to those who have waved an unfortunate goodbye to the whole kit.

We’d all like to hear from her on here, and over on the dark side too🙂
 
mikeyB said:
Hi Dunagree

As far as the diabetes is concerned, there’s a whole lot to learn, so it would be a good idea for your daughter to register on here for advice on Type 3c control from some of the Creonistas

But for controlling the symptoms of a lack of a pancreas from the diet and Creon dosage, the Pancreatitis forum is the place to go, because it can be a bit tricky to get right.

That’s at Pancreatitis-forum.org.uk

A few folk, like me, are on both. And learn from both.

You can’t read any of the posts on the Pancreatitis forum without registering. But as a place to find folk in exactly the same situation, you can’t do better. They’ve seen everything. And they are all just as friendly and welcoming as here.

The one rule to remember about Creon is that it isn’t a drug. You can’t overdose on it, nor can you stick to a fixed dosage. The correct dose is the dose that gives you normal bowel motions. That could mean a couple of 10,000mg capsules with a meal, or three 40,000 capsules. It’s trial and error, and most GPs have no experience of using it, to say nothing of seeing patients with no pancreas. It’s rare, so they never prescribe enough. Hence the need for the forum. A low fat diet helps with symptoms.

Most people on the Pancreatitis forum avoid alcohol like the plague to avoid further damage to the pancreas (or further episodes of acute pancreatitis), but that doesn’t apply to those who have waved an unfortunate goodbye to the whole kit.

We’d all like to hear from her on here, and over on the dark side too🙂
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Hi @ MickyB

Thanks so much for the information on the creon and pancreatitis forum - will get signed up. Our experience is that the GPs don’t have experience of dealing with patients without a pancreas. Once out of hospital it a tough learning curve. Lots of learn and hope we can also be of support to others- in time..
Terri
 
Hi @Dunagree. Sorry to hear about your daughter. I had a distal pancreatectomy ( removal of body and tail)11 years ago at the age of 47. You didn’t mention your daughter’s age but am assuming she’s younger. I cope reasonably well with my diabetes and Creon, although I have been known to throw my rattle out of the pram on occasions. What I would say, it’s very early days after such major surgery and her blood glucose levels will be all over the place and I’m betting gastric problems may be more of a problem. The one thing is to know you can’t overdose on Creon, but taking too much will lead to other problems, constipation being one. I try and avoid very fatty food, cream is a killer, so no cream cakes which is probably good seen as we are diabetic! It’s a bit suck it and see at first, I still don’t always get it right, Creon or insulin but it sounds, like me, that she has great family support and that goes a long way. Make sure she is getting lots of support from her diabetes team, us type 3Cs are fairly rare and very misunderstood. Any questions please fire away or PM me, I will be glad to help. Elaine.
 
Ljc said:
Hello @Dunagree , welcome to the forum. It must have been an awful shock for you all. How is your daughter getting on now.
Sorry I can’t be of much help.
We do have a few people on here in a similar situation to your daughter, I will tag @Pumper_Sue .
I believe their is a Panceatitis forum but don’t know the address.
Lin.
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Think you mean @pottersusan Ljc, she doesn’t post very often now.
 
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Hi to Creonistas and greetings from Derry - does anyone know how to get hold of the creon ( slide open) cases that fit into a bag/ pocket. I got a few for my daughter when she had her TP but they’ve all gone missing. Claire is 31, 3 years post op and doing well. She recently contributed to the PCUK campaign on PERT, helping to raise awareness among health professionals

Wishing you all a very happy Christmas
Terri
 
Dunagree said:
Hi to Creonistas and greetings from Derry - does anyone know how to get hold of the creon ( slide open) cases that fit into a bag/ pocket. I got a few for my daughter when she had her TP but they’ve all gone missing. Claire is 31, 3 years post op and doing well. She recently contributed to the PCUK campaign on PERT, helping to raise awareness among health professionals

Wishing you all a very happy Christmas
Terri
Click to expand...

All I use is small pill bottle, got few from pharmacy when started on treatment, each bottle holds about 18 creon tabs, great when away for day or two, fit comfortably in pocket & not bulky.
 
Dunagree said:
Hi to Creonistas and greetings from Derry - does anyone know how to get hold of the creon ( slide open) cases that fit into a bag/ pocket. I got a few for my daughter when she had her TP but they’ve all gone missing. Claire is 31, 3 years post op and doing well. She recently contributed to the PCUK campaign on PERT, helping to raise awareness among health professionals

Wishing you all a very happy Christmas
Terri
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Hi @Dunagree . I think I know the sort you mean. I was given one by my dietician - slides open with slots to hold 14 Creon capsules, with an Abbott label on it. It goes everywhere with me.
Afraid I haven't manage to track down any others, although I've been searching.
If you do track down any more I'd love to know where you found them as I'm worried about losing it.
 
Dunagree said:
Hi to Creonistas and greetings from Derry - does anyone know how to get hold of the creon ( slide open) cases that fit into a bag/ pocket. I got a few for my daughter when she had her TP but they’ve all gone missing. Claire is 31, 3 years post op and doing well. She recently contributed to the PCUK campaign on PERT, helping to raise awareness among health professionals

Wishing you all a very happy Christmas
Terri
Click to expand...
E-mail abbott and they will send you the cases. Last time they sent me 3 - Orange, Pink, Green. Was thinking I need to try them again as I've just gone up to 16 capsules so a 14 capsule holder no longer works.
 
martindt1606 said:
E-mail abbott and they will send you the cases. Last time they sent me 3 - Orange, Pink, Green. Was thinking I need to try them again as I've just gone up to 16 capsules so a 14 capsule holder no longer works.
Click to expand...
Thanks @martindt1606 . I've sent them an email.
 
Abbott no longer produced them so I contacted Mylan, who now manufacture Creon.
Have had a reply and they are sending some out.
The reply came from productenquiries@viatris.com
 
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