Pancreas/constipation/diarrhea/Creon/EPI

I take 36,000 mg Creon with meals, but I find that smaller meals, 5 to 6 times a day, to be less difficult to digest. As the Creon causes constipation (and it seems, occasional diarrhea as well) I was hoping to reduce the Creon intake from 36,000 a meal to 18,000 (3 x 6,000).

The other issue with taking Creon is the size if the meal, amount of fat in the meal (so I am told, but I often wonder, who really knows for sure 100% of anything).

The bladder issues "seem to be" related to constipation; the bladder has issues operating properly if constipated. I have had several medical tests that ruled out anything else. My urologist, who is well respected, politely said that in the grand scheme of my issues, I am simply lucky that I only have occasional bedwetting at night, and only a couple of times per month. Some people with EPI have bowel accidents much more often than I do, and ultimately it seems constipation can cause problems with the nerves muscle control.

Re: cancer. There were some tests that came back originally that had indicated it could be a concern. There were so many tests and scans when this all began that I can't tell you what it was, as it was both physically and emotionally overwhelming at the time and I just pushed through it all.

Thanks for the reply. I’m actually very new to this disease, so sorry I was off the mark. Good to know that dosing is important. My GI has not been helpful at all, but can’t seem to find one that is. I read a lot and my PCP is wonderful in supporting me! I too have other issues that interfere. IBS, Lactose Intolerance and a redundant, tortuous colon. It’s a journey for sure!

Wow, 17 years of dealing with this is a lot! I can’t imagine it.

I am taking 1000 mcg sublingual of B12 daily and will indefinitely. My neurologist is overseeing my treatment and progress. I took injections last year when first diagnosed, but was not instructed to continue, so I never got my deficiency restored. Anyway, I had a normal colonoscopy in 2020, except for some diverticulosis and internal hemorrhoids, that didn’t need treatment. I had no idea I had either. So, none of the doctors really had much to offer me, except the standard advice of eating plenty of fiber, drinking plenty water, exercise, etc. Even prescribed meds only worked for a couple of days. Miralax worked ok, except I didn’t like having jello consistency in stools. I have another colonoscopy scheduled for next month, but may postpone it, since I’m doing so much better. I have discussed that with the main gastroenterologist.

I read where many patients with IBSC or CC get all kinds of tests, like scans, motility tracking, etc,, but I had none of those. I don’t know why. I have had 2 anoscopies that were normal.

Have you had extensive testing?

My mom has had IBS fluctuating between diarrhea and constipation for most of her life. Currently, she is really regular. I have no idea why. She has also had severe B12 deficiency and takes injections due to inability to process it. Her regularity coincides with when she started B12 injections.

It’s good your levels are normal. I can understand why you are so frustrated. IMO, it takes a curious, diligent doctor to help figure out how to help patients with these types of symptoms. I hope you’ll get some feedback around here. Good luck with your search for help!

Have you tried Mayo Clinic?

Celia16
Yes, lots of testing. Some have rendered results that are like it was someone else's tests. And, of course, the 🤮dr.s just shrug their shoulders and offer sage advice: "wow, that's an odd result, but it does not apply to this particular situation, so just forget about it ". And, no, I'm not kidding. This B-12 has never been mentioned, it has me too stunned and angry. I have spent/wasted so much money on my health,. I am very lucky to have a supportive husband and a business that I was able to make good money, then, good price when I was forced to sell it cuz I got too stupid to think and too exhausted to even care anymore. Years ago I allowed myself to be put through a lot of painful, difficult, tests for pelvic floor disorder. At a major medical facility like Mayo,but not them. Long story, I won't have any of the tests for motility or muscle issues in my entire GI...throat to butt. I am going through with my parathyroidectomy, then I will quit the search for anything. Oops, I better shut up now.

Creondave, could you explain EPI, what does it stand for, what problems sent you to the dr., what kind of dr.? What is Creon and what does it do? Are your bowel and bladder issues related to or caused by the EPI? I'm 65, I feel so yucky and exhausted all the time that I rarely leave my house. But when I do, I get to wear those lovely and comfy Depends. Have you found any other brands that are more comfy? I guess as a woman who has been through childbirth, self esteem and related issues left along time ago. I do understand that this is not easy for you. I am grateful that I don't have leakage issues, well except for bladder every time I sneeze, cough, vomit, then it comes out both end. Oh, also, why was cancer, a concern of the drs? If I am asking too many questions, just tell me to stop. This is embarrassing stuff to talk about, but I know I am here because I have lost all respect for our medical institutions and people. Shelley

I have found men’s adult diapers to work best for comfort and effectiveness.

Yes, it sounds like you have indeed suffered a lot….just incredible. I’m not sure what to say, but please get the B12 blood test (before you take any) to make sure it’s ok. My neurologist says deficiency is quite common and often goes undetected. I can’t figure out why it’s not a common screening.

Celia16, .....okay, your reply pushed me to get my B-12 levels. Between 2007-2023(7 tests), my lowest level was 517 in 2014, 1650 in 2023, avg of 813. My test papers says >=200 pg/mL. What does your paper say is the normal range? What level does your neurologist says is best? What level is the highest, that is still ok? I have taken supplements randomly throughout past years, but none for a long time. How fast will the sublingual type show an increase? Thanx for caring enough to take your time to reply. Right now, caring truthfulness, is a much, much more important issue to me, than most people would realize. So, ‼️😇🫂 Shelley

Great! I am female. What is the brand name and what size of men's would equal medium size +- for me? Thanx for sharing your time and answering me. I really appreciate it. Shelley