Newbie saying hi

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Hi, less than 2 weeks Type 1 diagnosis for me. I know what you mean but I think 3C is more complex.
Good luck
 
Hi and welcome.

Yes, it is a steep learning curve and perfectly normal to feel overwhelmed by it all.
Would you like to explain how you come to be Type 3c.... ie pancreatitis, cancer, surgery, trauma etc. Type 3c covers a variety of scenarios where the pancreas is damaged either by disease, surgery or trauma and resulting Type 3c treatment can vary as a result.
Are you on insulin yet and if so, which ones and do you have Freestyle Libre sensors or other CGM to help monitor your levels?

Being a member of this forum is great for filling in the blanks, gaining knowledge, support and confidence and learning practical tips but also for just helping you feel like you are not alone with this, as diabetes can be quite frightening and isolating at times.
 
Hi Nudskipe,
I too have Type 3c but only 3 weeks into my journey so a lot to learn.
What specific ways have you found it challenging and any more detail you are happy to provide will enable much more experienced members than me to offer sound advice and info which hopefully you will benefit from.
We all need support and especially when newly diagnosed and this forum is a great place to get that support.
Happy to share my story if that helps in any way.
GL
 
rebrascora said:
Hi and welcome.

Yes, it is a steep learning curve and perfectly normal to feel overwhelmed by it all.
Would you like to explain how you come to be Type 3c.... ie pancreatitis, cancer, surgery, trauma etc. Type 3c covers a variety of scenarios where the pancreas is damaged either by disease, surgery or trauma and resulting Type 3c treatment can vary as a result.
Are you on insulin yet and if so, which ones and do you have Freestyle Libre sensors or other CGM to help monitor your levels?

Being a member of this forum is great for filling in the blanks, gaining knowledge, support and confidence and learning practical tips but also for just helping you feel like you are not alone with this, as diabetes can be quite frightening and isolating at times.
Click to expand...
Hi,
I had a Whipples 16 months ago for a GIST.
I am not on Insulin at present, but Metformin.
 
Sorry to hear that but hope your surgery has been successful and perhaps not required follow up treatments. Sounds like your Whipples surgery has left you with some pancreatic function ie insulin production which may wane over time but gives you an opportunity to learn more about diabetes and get to grips with Creon usage before you perhaps eventually need to embrace insulin therapy too. Some people are totally dropped into the deep end, coming out of surgery fully insulin dependent as well as needing Creon and some don't need Creon initially with Type 3c, so a very broad spectrum of scenarios.
I wonder if your surgical site might benefit from scar massage therapy. I think @Proud to be erratic has some info on it and preventing lesions developing in the scar tissue early on after surgery can help to reduce the risks of complications later on. I believe it is a relatively new field but worth knowing about the options available now. I think it is recognized within the NHS but probably more accessible privately. @eggyg has found that the issues and medical emergencies with adhesions from deep scar tissue are much more challenging long term than the management of diabetes with insulin. so it may be a worthwhile investment both in terms of private therapy if nothing is offered via the NHS in your area but also what you can learn to do yourself perhaps guided by a qualified therapist.

Anyway, just a few thoughts on your current situation. Whatever questions or concerns you have. do please ask.
What are you finding challenging with the diabetes management at the moment? Is it just what to eat and what to avoid? If so, then getting yourself a BG meter and test strips will help you to be able to see what your body can tolerate and in what portion size. We liken managing diabetes without a BG meter to driving without a speedometer here on the forum. It really is an invaluable tool in helping you to understand how your body works and tailoring your diet to your tastes and your body's response to foods. If you are interested i this approach, we can recommend the most reliable and cost effective test kits and suggest a suitable testing regime.
 
Welcome to the forum @Nudskipie

Good to have you join our happy band of Creonistas 🙂

@Proud to be erratic has also had a ‘whipples’ so you may be able to compare notes.

Type 3c does seem to involve a slightly different roll-out of meds from person to person, but I believe insulin usually fewtires sooner or later. What are your BG levels like on Metformin alone?
 
Hello @Nudskipie,

Welcome to our selective club! I had Pancreatic Cancer from a tumour wrapped around my pancreas and my Whipples' in Feb '20 resulted in a total pancreatectomy, hence I immediately became insulin dependent. So my circumstances have some similarity to you, but not so much. Until you mentioned GIST - I'm afraid I had no idea that particular term or condition existed.

While there are a few of us on this forum who are T3c and particularly after a Whipples, I only know of one other T3c member who is on metformin and not yet had to succumb to being insulin dependent and that is @zippyjojo. But Jo had a distal pancreatectomy and (I think) a splenectomy both last November - so her circumstances have the simarity to you of not needing insulin (on Metformin) but hers from surgery around the pancreas not the intestine.

All that said, there is a huge wealth of experience in managing diabetes both for folks who are insulin dependent and those like yourself managing with oral meds, such as the frequently found metformin. There are a number of us needing Creon constantly, known within this forum as creonistas and even that treatment seems to have huge variations in how many capsules a day any one of us needs. Also several of us getting on with life after Cancer and even a few whose diabetic diagnosis is not yet finalised! So if there are things bothering you about managing your D, do please ask. We have one great common denominator, we all agree that no question is stupid and we are happy to offer responses if we can. One question if I may, have you needed follow up treatment such as chemotherapy or radiography post surgery?

Anyway welcome.
 
Nudskipie said:
Hi Roland,
Thanks for your reply.
I required no further treatment after surgery thankfully.
Alison
Click to expand...
Hi Alison, that's great to hear.

At reply #8 @rebrascora touched on the topic of scar tissue massage. This topic seems to be something of a black hole, in that I suspect we all get told in our pre-op risk assessments that there is a risk from scar tissue. I certainly was, its written on my paperwork. But I was also told that death was a risk and that tends to deflect one's attention from lesser risks! So I certainly never asked for more guidance about scar tissue risks.

Anyway 2+ bit yrs after my Whipples' I awoke one Friday morning 'well-blocked' and tolerated this over the weekend, but getting increasingly more uncomfortable. Early Mon am I presented at A&E, luckily was quickly seen and ultrasound revealed multiple blockages in my colon and bowel. 4 days of non-intrusive investigation confirmed my colon was ensnared close to the Whipples' site and I readily agreed to more surgery. My colon was trapped on hardened scar tissue from the Whipples' which was duly freed off and I was finally discharged after 3+weeks in hospital.

Subsequent research revealed this 'scar tissue trapping' was far more frequent than openly discussed and that there are a small number of scar tissue therapists who treat this with light massage techniques. One needs a referral. I now infrequently check - I can lightly press around my scar and can feel a tight muscle/tissue mass along that line, particularly at the zone where my colon passes the scar. Apparently as the scar tissue ages it hardens and reaches a point where massage is no longer effective. I am not medically qualified but I learnt 2 things from this experience:
1. I should not have delayed before going to A&E. My blockage meant my Colon and stomach was filling up and I had got dangerously close to overflowing upwards into a natural body cavity with the very acid stomach contents. This got me a lot of attention in A&E to keep me upright and urgently get me drained. That left a foul taste!​
2. The first 24 months (+/-) after such major surgery are a period when scar tissue might be reduced with appropriate treatment. But I found that out a bit too late! If I'd been told about this, that information passed me by - distracted by greater risks!​

I'm certainly not saying this will happen to you. But my understanding is that the first 2-3 years post op leaves us with some increased scar tissue vulnerability and I didn't know that. I assumed once outwardly healed and back to my normal activity levels I was now fine. Whether knowing would have made any difference in how I then behaved is a different thing.

Anyway even though there doesn't initially seem to be anyone on this forum with a very close scenario to you and your GIST, do feel free to reach out if the "boy is the T3c challenging" stays challenging! There are always members here who can and will help if they possibly can.
 
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