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New to pancreatic insufficiency. What does this journey look like?
I have been experiencing chronic diarrhea for ten weeks. As I thought it was another bout of IBS, which I have struggled with off and on for the last thirty years, I started working with a functional medicine clinic. After many weeks I realized this does not look like my usual gut issues so went to a local GI clinic and they ordered more tests. Apparently I have pancreatic insufficiency and the PA ordered some digestive enzymes. Calprotectin levels slightly elevated but PA isn’t that concerned. Pancreatic elastase very low hence the prescription for enzymes. Currently I can hardly eat having built up a fear of eating and the resultant onslaught of diarrhea. My gut is, very tender and irritated I’m imagining. If you have been on a similar journey please share your experience and what helped in your recovery. Many thanks.
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Hi Cheryl,
I’m in the US! I had no idea you were in AU!!!
Welcome to the board, and I wish that I knew of sources of help that are close to you!
I will contact the NPS here and ask them if they have any recommendations for someone living in AU.
Surely we can find something!!!
Welcome, welcome, welcome! I’m so glad you reached out.
They’re always something new to learn here and I totally understand frustration in dealing with the lack of knowledge with EPI and the many complications that may accompany the diagnosis.
I’ll get back with you ASAP after I call the NPF tomorrow!!!
Huge hugs from me, Gramny Dee
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2 ReactionsYes, I agree that our doctors need to work together…in a perfect world! Ha!
I do not know if this idea will help…but here is how I approach keeping my specialists on the same page:
I keep a journal of my
1. symptoms
2. medications
3. Diet
4. exercise activities
I make a copy for my file that I maintain at home and one for each specialist so we are ALL on the same page.
This includes my
primary care physician,
gastroenterologist,
Cardiologist,
allergy specialist
I try to keep everyone on the same page and they absolutely love and appreciate that I bring the this to my appointments.
I give it to the nurse that does my intake for my appt and the dr has read it and has it in their hands when they come in the exam room and asks me questions. This keeps us on track and also ensures that ALL of MY questions are answered also.
I do try to keep my records succinct and to the point because my time is valuable to me just as the specialists time is to them! It’s professional, to the point, accurate and that way I don’t forget anything important.
I hope this helps.
Ps, printed out, it’s usually one page, front and back, using an easy to read font.
Thank you for your insight. A big difference is that the only health care provider engaged in my medical care is my current oncologist, although he did refer me to a radiation oncologist who wasn't "happy" once he had examined my scans & done a brief physical exam about doing any radiation at this point, even very targeted. I have seen dieticians a couple of times before starting with my new oncologist, but they (I'm sorry to say) uninterested in what seem like key points in my health history (I am a medical professional & although now retired, believe I deserve to be listened to). I have yet to have a referral to PT, or any meaningful counselling.
I do generally try to take along a succinct list of questions since my current oncologist is very much in demand, and often cannot spare more than 15 minutes to evaluate how I'm doing. On the other hand, he is good about responding to MyChart communications within the limits my university health care system suggests are appropriate. My last plea for help sent early Saturday AM (my legs are very very swollen) should be answered by sometime Tuesday to meet the standard. So often, however, it turns out to be a "placeholder" communication from an NP simply telling me she'll communicate my concerns to my oncologist.
Is this any way to deliver medical care? I don't think so....
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1 Reactionawww thank you
Gramny ? Granny ? I'm 72 & im also a granny. Where in usa are you ? big city ? farm area ?
Have been on Crrohn since 2015 because of 4 pancreatic cysts.
last Oct had a Distal Pancreotomy and Splenectomy then 3 overnighters in hospital in jan mar & april due to infection then "fluid collection" then blood clots. Now tupe 2 disbetic and fouble the crrohn but only under a GP and useless Dietician 😤😤😤
No specialists in regional cities & its 200km to hospital where I had operation.
Diabetes info online is verrry confusing as its opposite of diet recommendations post surgery & I still have cysts
Any advice appreciated --feeling ok I just dont want to cause myself future problems
Hugs & many thanks
Cheryl
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1 ReactionGood morning Cheryl from QLD
My partner had accidental finding of benign 5 cent size PNet in head and tail of pancreas. Had distal panc+spleen removed via laparoscopy last Oct'23. Type 2. Blood sugar is all over the place despite being on Metrex + Gliciside+Creon 25,000 3/day and 10,000 with snacks. On going diarrhoea. Once chopped is done, no more input from the surgeon n cohort. Attending OP but no general wellbeing post surgery done. Endocrinologist & GP was cranky coz no discharge summary was received from the hospital. Even his endocrinologist was unaware of the operation (isn't it shocking😱)
I am a Registered Nurse and being proactive with his appointments and diet. Recently had Dietician & nutritionist input. She gave us the list of what to eat & drinks (can give u a copy). We joined the NeuroEndocrine Australia (Victoria).