IBS, diabetes and now issues my pancreas: Thoughts?

Posted by fpc3 @fpc3, Nov 23 10:16am

Good morning. I'm not sure this is the right group for me, but I belong to several Mayo groups and I am impressed with the amount of support and caring I have experienced. As far as I know I do not have pancreatic cancer, but I can't find a group for other pancreatic problems. If this is not the group for me, maybe someone can redirect me.

At last week's meeting with my primary doctor, she reviewed data from my Dexcom G7 and my use of both long and short term insulin and said in simple terms that the pancreas has "given up" and essentially stopped working to control glucose levels. This concerns me and I would like to hear from people in a like situation.

Now, for more background:

I was diagnosed with acute pancreatitis in an emergency room visit a couple of years ago, several months after a six-month course of Long Covid. Diagnosis was based on symptoms and pancreatic enzyme levels that were abnormal. Lipase and amylase levels were wrong with one high and one low, but I don't remember which was which at this point. I was referred to GI and told to eliminate all beef, lamb and pork from my diet, along with greasy foods. The next round of blood work (after about 60 days) was better but not perfect, so I added OTC digestive enzymes. The next round of pancreatic enzyme tests were fine and all subsequent tests were fine. I added lean pork back to the diet with no problems because I was tired of just chicken, turkey, and fish. My primary doctor was fine with the addition of OTC digestive enzymes.

I am 71 with a 56 year history of IBS and a 35 year history of diabetes. IBS is different for everyone, in my opinion, and in my case I cannot eat most vegetables or beans without immediate issues. After 56 years with this, I know what to eat and what not to eat for my specific body situation

After managing diabetes with prescription pills for many years with up and down results, my primary suggested diabetic injectables. We tried Victoza, Bydureon, and Ozempic. At the preferred (highest) level of each drug, I had various IBS issues and with Ozempic at the upper level, I developed cardiac issues (a rare side effect, but I developed it). My cardiologist suggested stopping the Ozempic completely, and all cardiac symptoms went away in 8 to 10 days. The primary doctor suggested long-term insulin at night, but my Dexcom G7 was still showing big spikes during the day with highs and lows for sugar, so the endo doc added short term insulin. That has helped considerably, smoothing out the big peaks and valleys to where my 14 day average now show as about 150 throughout the course of the day with me in the green zone 70 percent of the time.

I've read that a pancreas can just stop working. Apparently, this may be called pancreatic insufficiency or chronic pancreatitis (versus the acute I was diagnosed with) although my doctor did not say that.

Does any of this make sense to anyone and is there a group here at Mayo that deals with a chronic or acute or non-working pancreas? I don't want to bother the readers dealing with pancreatic cancer with my far less important issues (at least less important in my mind than cancer). I'm so sorry that you are dealing with cancer when I am only dealing with something that I seem to be able to control with glucose management, diet, and exercise, although I do not consider my quality of life to be as good as it was in previous years.

Thank you to anyone who has read this far and would like to respond.

Frank

Interested in more discussions like this? Go to the Digestive Health Support Group.

Colleen Young, Connect Director | @colleenyoung | Dec 2 4:12pm

Hi @fpc3, I moved your question to the Digestive Health support group and the Diabetes/Endocrine system support group, where you can connect with other members are familiar pancreatic conditions like @cehunt57 @hopethereisnothing @susanh824 @debhammel @grannydee @jewill @fbbraha and others.

Frank, has it been determined in the meantime if you have pancreatic insufficiency or chronic pancreatitis or something else? How are you doing?

fpc3 | @fpc3 | Dec 7 2:01pm

Thanks for responding. I was wondering if my post had been lost and I was reasonably certain I had posted to the wrong board. My PCM has diagnosed exocrine and endocrine pancreatic insufficiency. She has not changed the acute diagnosis to chronic yet because she feels that under Medicare (standard) and my supplemental, she would need testing that would require me to go off all the enzymes and more than likely off the insulin for as long as two weeks. I really don’t want to do that. The effect on the IBS and diabetes would be devastating for me.

I’m not sure it matters at this point if I know if it is still acute or has changed to chronic. I’ll start following the two other boards you mentioned and see if anyone else has experienced this particular series of diseases. I am lucky to have multiple large hospitals (some are teaching facilities) within ten miles of my home. The nearest one has a Center for Digestive Health that is separate and distinct from their GI medical clinic, so maybe I will contact them.

Thanks for your suggestions.

Frank

Cheryl, Volunteer Mentor | @cehunt57 | Dec 7 6:30pm

Hi Frank (@fpc3). As Colleen (moderator / director of Mayo Clinic Connect) mentioned, I found your post in the Diabetes / Endocrinology group. That is where I spend most of my Mayo Clinic Connect time.

I’m nearly 68 years old and have had diabetes for 50ish years. I’ve had family and friends that have had pancreatic cancer, pancreatitis and all kinds of diabetes.

When you said that you feel IBS is different for everyone, I feel that is true of diabetes and other pancreas related issues too. It must be hard to hear from your provider that your “pancreas has “”given up”” and essentially stopped working to control glucose levels”. That might be true but you should not give up.

You have tried many medications, types of insulins and technological devices to improve your situation. There may be more things yet to try. I think sometimes our bodies become accustomed to the same old same old treatments and stop responding in the way they should. It can be helpful to try something new and different (even if just for the surprise value it could have on your body).

It is good that you have access to teaching facilities. Those places and people try to stay on top of the latest greatest options. They don’t want to come up short in their students’ or colleagues’ eyes. Could you ask your provider to help you explore new possibilities? If that is met with resistance maybe a 2nd opinion is called for?

cheyne | @cheyne | Dec 8 4:53pm

Hi,
I'm a relatively new to IBS and T2 diabetes, 13 years, although I suspect the T2 has been lurking for many more years than diagnosed.
What you are unable to eat interested me as I have the same issues with food. I have recently found Wagyu meat goes down fine with no appreciable side effect, in small amounts, occasionally. I don't eat red meat for my CKD health and stick with chicken or fish once a week. My gastro specialists has come to my way of thinking, if I can tolerate what I eat, keep eating it. Some of the foods supposedly good for me aren't and visa verses. I stick with what I have found works for me.
I live on wholemeal bread and cups of tea, no more than 4 slices per day and around 6 cups of tea per day. My IBS has been traced back to Autonomic polyneuropathy (ANS) caused from a severe bout of Campylobacter which nearly killed me.
I'm finding any more than a very small amount of food and fluid per day and I end up going into SIBO state. Leafy greens seem to be the worst for me, unfortunately I loved my greens.
As time goes by I'm also becoming more and more intolerant of oral medications, T2 is now insulin treated for that reason and still poorly controlled. Because of the ANS my digestive system is out of my control, my BP fluctuating wildly daily despite being medicated. he harder I work the lower the BP drops, but still high by most people's standard.
I spent a day in ED with very high BP and nothing could bring it down for 8 hours, then It suddenly dropped to my normal high, for no known reason. This is when I was diagnosed with ANS. Now with confirmed low level of Sella and CSVD in the brain who knows what is next.
Cheers