Total Pancreatectomy - anyone else?

[Claire S]

Hi, I'm Claire, I'm 28, and recently underwent surgery for a total pancreatectomy after finding a large psuedopapillary tumour that took over my pancreas. As part of the surgery they took the gall bladder and part of the duodenum, stomach and bile duct. I'm now a Type 3c diabetic (treat as Type 1), have to take Creon for Enzyme Replacement Therapy, and eat 4-5 small meals a day.

Unlike most people, I didn't have pancreatitis or any major symptoms before the surgery. Anyone else have a similar experience?

 

[PenguinMum]

Hi Claire I have had a distal pancretectomy (tail only) in 2012. It was not as invasive as yours and the surgeon managed to save my spleen. Like you I take Creon with food.I was diagnosed Diabetic T2 last Dec after a bleed was picked up behind my right eye.
I have managed to get down to pre diabetic levels through very low carbing despite that lately I am struggling with my numbers. However I was concerned about my pancreatic function and asked to be referred to an endocrynologist recently who told me that I will lose control eventually and as soon as My HbA1c is 48 I will go on insulin. I think he would have put me on insulin from the get go because he says I only have 50% pancrestic functionality. My next HbA1c is due before Christmas.

 

[PenguinMum]

PS. My op was not due to pancreatitis but a mucinous cystic neoplasm and I was in my 50s. How is your health now? You were very young to have this happen.

 

[Claire S]

Hi, sorry for the delay in replying! Sorry fo hear about your health, and hoping the diabetes settles after Christmas one way or another. I’m still unfamiliar with HbA1c as my operation came on rather suddenly.
Had do you find the Creon? Did you have to play around much with doses?
My health is fine other than some bowel issues (or there lack of!) which is causing bad pain but I’m trying to resolve. Finding it tricky to decide which pain is which but think I’m doing well - hoping stamina of walking/standing for more than 10mins improves soon!

 

[PenguinMum]

Hi Claire
I dont find taking Creon a problem and understand it is important to take it every time I eat anything. I had a problem with indigedtion for a few months after surgery but that settled down. I did have tummy problems for many years pre and post surgery which was investigated thoroughly with many tests including colonoscopy, endoscopy anf finally nuclear medicine scan. The result was bile acid malabsorption which caused chronic diarrohea everytime I ate fat. That has now been resolved by a daily low dose of Codeine (rather than the one licensed medicine which is poorly tolerated). Of course I am not saying that is the same for you. If you are having tummy issues after the op you should see a gastroentrologist and be checked out.
I would say that it takes up to a year to recover from pancretectomy, the tiredness and lack of energy are especially prevalent. However if your blood glucose levels are high that will also make you tired. All the best.

 

[PenguinMum]

Should have said re doses of Creon I take 25000 capsule with a meal and 10000 capsule with a snack but I really dont snack much any more. Btw I dont take any meds for Diabetes. Are you on insulin?

 

[Claire S]

I think I might end up on similar Creon doses as yourself - they initially said 80,000 for meals but that feels like it’s too much for me. I’m having bad constipation and ended up in a&e a few times with the pain. Scheduled to see a gastro specialist soon! Still getting pain after I eat, but perhaps that’s the “replumbing” as a result of the op.

I was lucky (supposedly!) with the tumour I had being isolated, so hopefully not expecting future complications - Creon and insulin are my lot!

I am on insulin, small doses so far and have been lucky the blood glucose hasn’t been too volatile - just 2 hypos since I left hospital.

 

[PenguinMum]

Hopefully you wont have to wait too long to see the gastro specialist. I am not aware of Creon causing constipation but admit I havent read the leaflet with it in years. I imagine you have a lot more readjustment because your op was more invasive than mine. I would advise drinking lots of water. Good luck and hope things improve for you real soon.

 

[akccoll]

Hubby had a total pancreatectomy 12 months ago and takes creon. He had a neurodecrine tumour that took over his pancreas. He knew nothing about it until an alert GP spotted abnormal blood results whilst testing for type 2 diabetes and sent him for scans. The tumour was overproducing insulin and we eventually realised that his occasional bad headaches, sweatiness and grotty feelings after a long lie-in were actually signs of a hypo. This was resolved by the removal of his pancreas/tumour.