Have you (or your loved one with T1D) also been diagnosed with Exocrine Pancreatic Insufficiency/Pancreatic Exocrine Insufficiency (EPI/PEI)?

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- 13 hours, 23 minutes ago
  
  Jeanne McMillan-Olson likes your comment at
  If you have been hospitalized for a reason unrelated to T1D and you were alert during your hospital stay, were you allowed to manage your own insulin dosage? (If you have been hospitalized for reasons unrelated to T1D multiple times, please select the option that describes your most recent hospital stay.)
  The hospital made me disengage my pump and promised to monitor my BG. After 10 hours with an incorrect basal my BG was high and going up. No nurse or doctor was available to administer insulin. I finally reinstalled my pump and forced the hospital to acknowledge that they could not monitor my BG. After appealing to the hospital Board, after my stay, they started using CGM's in all the wards for diabetic patients.
- 13 hours, 24 minutes ago
  
  Jeanne McMillan-Olson likes your comment at
  If you have been hospitalized for a reason unrelated to T1D and you were alert during your hospital stay, were you allowed to manage your own insulin dosage? (If you have been hospitalized for reasons unrelated to T1D multiple times, please select the option that describes your most recent hospital stay.)
  During my hospitalizations for cardiac issues, my endocrinologist (who does not do hospitals) told the attending endo that I was capable of managing the diabetes. I was allowed to mange pump and CGM without any problems. For one stay, I had a pump-using T1D nurse. This was the premier cardiac hospital in the western part of my state, so their handing of diabetes may be more advanced. There are two rules for handing the type 1 diabetic in a hospital setting. 1) Never separate the Type 1 diabetic from his or her insulin. 2) Let the expert in the room handle the diabetes. And bring your own supplies, because the hospital will not have pump supplies, CGM replacements, or your insulin.
- 14 hours, 15 minutes ago
  
  Jan Masty likes your comment at
  Have you (or your loved one with T1D) been diagnosed with retinopathy?
  No retinopathy... But AMD both eyes last 2 years...No treatment available... Unable to wright... bareley able to read only large type... use the talking guy hideing in my computer to read for me... Almost 91 years OLD.... 70 years T1D...
- 14 hours, 43 minutes ago
  
  mojoseje likes your comment at
  During your most recent appointment, about how much time did you spend with your main T1D health care provider?
  I didn't have a stopwatch out, but it was about 12 to 15 minutes. There was a lot to go over (new devices, etc.). I probably got everything I needed, but, for some reason, I always feel rushed at this office.
- 14 hours, 55 minutes ago
  
  KarenM6 likes your comment at
  During your most recent appointment, about how much time did you spend with your main T1D health care provider?
  It was so long ago, I don't remember...
- 15 hours, 48 minutes ago
  
  Janis Senungetuk likes your comment at
  During your most recent appointment, about how much time did you spend with your main T1D health care provider?
  It was over 20 minutes but since my Endo has me so well Regulated (A1c 5.4 - 5.6) even Medicare is allowing a Visit every 4 Months. Dex 6 and Tandem CIQ is my Cure!
- 15 hours, 55 minutes ago
  
  Judy Hampton likes your comment at
  During your most recent appointment, about how much time did you spend with your main T1D health care provider?
  My A1C is normally in the 5 to 6 range also, but I am lucky to have an Endo who answers any questions I may have and discourse on new technologies. He also checks my feet and eyes. He spends up to 40 minutes with me. I have been T1D for 59 years and have been through a pregnancy (hellish) also. I still have many questions about this disease and it’s effects on the rest of my body as I am very active.
- 16 hours, 17 minutes ago
  
  Patricia Dalrymple likes your comment at
  During your most recent appointment, about how much time did you spend with your main T1D health care provider?
  I believe if you have good control and your A1C's prove it, maybe 10 to 20 minutes is enough. My A1C's are in the high 5's / low 6's so my session is usually complete within minutes tops, but there are probably other patients that should require a little more time from their endo to get them on a 'well managed' A1C path.
- 16 hours, 19 minutes ago
  
  cynthia jaworski likes your comment at
  During your most recent appointment, about how much time did you spend with your main T1D health care provider?
  I believe if you have good control and your A1C's prove it, maybe 10 to 20 minutes is enough. My A1C's are in the high 5's / low 6's so my session is usually complete within minutes tops, but there are probably other patients that should require a little more time from their endo to get them on a 'well managed' A1C path.
- 16 hours, 26 minutes ago
  
  Anneyun likes your comment at
  If you are an adult with T1D, how much has type 1 diabetes affected your thought-process and decision to have/not have children?
  I was diagnosed at age 12 and I don’t remember anyone talking to me about having or not having children. I married at 23, had an unplanned pregnancy that began when I was 24. I was not seeing an endocrinologist at the time (in 1979), but my OB doctor sent me to one. Both of the doctors made comments to me about maybe ending the pregnancy, but my answer was a definite NO!!! It was a hard pregnancy without the better insulin and technology that is available today. I went into labor approximately 6 weeks before my estimated due date. Since a Caesarian had been planned, no one had explained anything to me about going through labor, so that took longer and was harder on me than it should have been. Anyway I delivered a 7 pound, 11 ounce boy. He had jaundice and a slight heart murmur at first , but that cleared up after a short stay in the hospital. My son is 42 now and bloodwork has indicated he will not become a T1D. Same with his 2 children. That was my only pregnancy. I am now 67.
- 17 hours, 51 minutes ago
  
  Joan Fray likes your comment at
  During your most recent appointment, about how much time did you spend with your main T1D health care provider?
  It was so long ago, I don't remember...
- 1 day, 8 hours ago
  
  TS likes your comment at
  If you have ever had extra supplies from a device you no longer use, what did you do with those extra supplies? Please select all that apply.
  InsulinPumpers.com does a great job of distributing supplies to those in need.
- 1 day, 13 hours ago
  
  jo likes your comment at
  If you have ever had extra supplies from a device you no longer use, what did you do with those extra supplies? Please select all that apply.
  I have decided to give them to my endo's office. They have a nice supply closet of donations, that they give to people in trouble. Since i have had to dip in that closet once, I now know how important that can be.
- 1 day, 13 hours ago
  
  jo likes your comment at
  If you have ever had extra supplies from a device you no longer use, what did you do with those extra supplies? Please select all that apply.
  InsulinPumpers.com does a great job of distributing supplies to those in need.
- 1 day, 13 hours ago
  
  KarenM6 likes your comment at
  If you have ever had extra supplies from a device you no longer use, what did you do with those extra supplies? Please select all that apply.
  I tried to donate them to my healthcare system but was told they were not allowed to take them. I tried a couple of other places- same story so I now will have to put them in the garbage
- 1 day, 13 hours ago
  
  KarenM6 likes your comment at
  If you have ever had extra supplies from a device you no longer use, what did you do with those extra supplies? Please select all that apply.
  I'm still looking for someone to give them to.
- 1 day, 13 hours ago
  
  KarenM6 likes your comment at
  If you have ever had extra supplies from a device you no longer use, what did you do with those extra supplies? Please select all that apply.
  I would love to learn of places to give/donate supplies!
- 1 day, 13 hours ago
  
  KarenM6 likes your comment at
  If you have ever had extra supplies from a device you no longer use, what did you do with those extra supplies? Please select all that apply.
  My other was gave them to the Endocrinologist office to give to people who needed them
- 1 day, 14 hours ago
  
  Trina Blake likes your comment at
  If you have ever had extra supplies from a device you no longer use, what did you do with those extra supplies? Please select all that apply.
  I have decided to give them to my endo's office. They have a nice supply closet of donations, that they give to people in trouble. Since i have had to dip in that closet once, I now know how important that can be.
- 1 day, 15 hours ago
  
  Amanda Barras likes your comment at
  If you have ever had extra supplies from a device you no longer use, what did you do with those extra supplies? Please select all that apply.
  I have decided to give them to my endo's office. They have a nice supply closet of donations, that they give to people in trouble. Since i have had to dip in that closet once, I now know how important that can be.
- 1 day, 15 hours ago
  
  Richard Wiener likes your comment at
  If you have ever had extra supplies from a device you no longer use, what did you do with those extra supplies? Please select all that apply.
  I would love to learn of places to give/donate supplies!
- 1 day, 16 hours ago
  
  Janis Senungetuk likes your comment at
  If you have ever had extra supplies from a device you no longer use, what did you do with those extra supplies? Please select all that apply.
  I gave insulin to a friend for her cat who used the same as I did.( she also checked with her vet).
- 1 day, 16 hours ago
  
  pru barry likes your comment at
  If you have ever had extra supplies from a device you no longer use, what did you do with those extra supplies? Please select all that apply.
  I gave insulin to a friend for her cat who used the same as I did.( she also checked with her vet).
- 1 day, 16 hours ago
  
  pru barry likes your comment at
  If you have ever had extra supplies from a device you no longer use, what did you do with those extra supplies? Please select all that apply.
  I have given most to my doctor to give to someone in need. Some I gave to my chiropractor for his son.
- 1 day, 17 hours ago
  
  Sue Martin likes your comment at
  If you have ever had extra supplies from a device you no longer use, what did you do with those extra supplies? Please select all that apply.
  My unused diabetes supplies like meters, that I was given but don’t use, just sit in a drawer. I wish there was someplace to send them. Any ideas, folks?
Clear All

Have you (or your loved one with T1D) also been diagnosed with Exocrine Pancreatic Insufficiency/Pancreatic Exocrine Insufficiency (EPI/PEI)?

What advice would you give to a caregiver of a teenager with T1D?

Sarah Howard

Sarah Howard (nee Tackett) has dedicated her career to supporting the T1D community ever since she was diagnosed with T1D while in college in May 2013. Since then, she has worked for various diabetes organizations, focusing on research, advocacy, and community-building efforts for people with T1D and their loved ones. Sarah is currently the Senior Marketing Manager at T1D Exchange. Sarah and her husband live in NYC with their cat Gracie. In her spare time, she enjoys doing comedy, taking dance classes, visiting art museums, and exploring different neighborhoods in NYC.

9 Comments

Ahh Life

Ignorance is bliss.

So naturally I go to Google. Unfortunately, Google has decided to improve search by going to Power Point pictures readable by 4-year olds for rather complex subjects. I firmly believe that Power Point will be the death of civilization. And I am holding Bill Gates personally responsible.

A better explanation is: https://www.medicalnewstoday.com/articles/exocrine-pancreatic-insufficiency-diabetes-link#summary

6

1 month ago Log in to Reply
Lawrence S.

Thanks, Ahhh Life, this is a new one for me. I read some of article you posted. Thanks.

1

1 month ago Log in to Reply
Tom Caesar

Oh swell, another thing to fret about!

3

1 month ago Log in to Reply
Natalie Daley

I never heard of this.

1

1 month ago Log in to Reply
MARIE

I believe this is of primary concern to those who acquired diabetes when they lost their pancreas to disease. It’s not something that typically follows T1D (unless the person has lost all or part of their pancreas.)

Unfortunately, not all doctors understand it. The ‘cure’ is to take enzymes with every meal for the rest of your life. But my DH was a rehab hospital when he went back on solid food and after I insisted that enzyme replacement therapy was necessary, the doctor there put him on 6,000 units of pancreatic enzymes once a day. Once we got DH to a GI doctor, we found that the correct dose was 72,000 units with every meal. It’s three capsules with every meal but it keeps him symptom free. I suspect, given the choice, he’d prefer the EPI over T1D any day.

1

1 month ago Log in to Reply
KarenM6

No for me… but, no doctor has talked to me about it, nor have I been tested for it.

1

1 month ago Log in to Reply
Molly Jones

I have not been diagnosed with this but have gastroparesis which explains my sporadic but often very delayed rising in BG after eating.
When I look this condition up on pubmed it is continuing medical education in 2022 and many doctors are not aware of it, and it is often misdiagnosed or not noticed.

1 month ago Log in to Reply
Frederick Schulz

I was just diagnosed recently, after an MRI , ultrasound exam and , starting out several months ago, in a stool test that showed a very low level of enzymes. The endocrinologists have been seeking the cause of my IBS for months, if not years, and finally came upon this, after many other exams, tests, diatary changes, etc. I have been using, since it was first suspected over a month ago, an enzyme replacement medication, Creon, taken whenever I eat something. It has certainly improved my IBS, although not eliminated it. Part of the problem may be mine, in taking the medication as prescribed, and eating a better diet. I am still working with the doctors on this.

1 month ago Log in to Reply
T1D4LongTime

No. Never heard of these conditions.

4 weeks ago Log in to Reply