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Pancreas/constipation/diarrhea/Creon/EPI
I am starting a new discussion regarding the above. Cuz I am getting confused..nothing new for me..
First time any dr. mentioned my pancreas, was a little line on a CT scan w/contrast of my abdomen, looking for a potential partial small bowel obstruction forming (per 2 prior X-rays, 1 month apart, different Radiologists readings). Technically, no dr. said anything to me about it, even my GI of 17 yrs. The report said "partial fatty replacement infiltration, otherwise pancreas ok." I called my endocrinologist, I have other endocrine issues, she tested my blood sugar/insulin (I don't have diabetes), she said that told her that my pancreas was producing enzymes.; but she didn't/couldn't tell me anything else about my pancreas. I have never been a drinker or smoker. I have seriously horrible unresolved CIC(chronic idiopathic constipation), i cause my guts to stay in a mushy to diarrhea state with lots of Miralax, eat small amounts of solid food, drink meal replacement protein shakes. I MUST NOT let my 💩 get solid. I have had one ER/ICU for a very painful partial small bowel obstruction and 3 complete blockages in my anus, requiring me to have to do "digital removal " myself, nearly passing out due to the pain. I don't take Creon, never heard of it before this. I don't have any idea how/or if my pancreas is involved or if my pancreas is another problem. I have to admit that my other problems have put the pancreas on the farthest back burner, no pain means it gets ignored at this stage. I would like to share, hear and understand how your pancreas issues presented initially, about how bad it is, per your doctor.
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CC can be horrible. Your experiences sound very distressing. I don’t think most people understand.
I have discussed my issue with my primary, endocrinologist, 2 neurologists and 3 gastroenterologists ( gastro all at Duke). I’ve tried 2 prescription meds which only worked s couple of days.
I suppose my CC was idiopathic, since the cause was undetermined. I have Type 1 diabetes, so my pancreas is pretty shot. It doesn’t really do what I need, however I had normal BMs until almost 2 years ago. Suddenly, i got zero BMs. Nothing would happen, unless I took Metamucil and Miralax. I posted around here about it until a few weeks ago.
I am doing really well, since starting mega doses of Vitamin B12. The deficiency was diagnosed last year, but I was undertreated. With proper treatment, I am going regularly without Metamucil or Miralax! It’s amazing! I don’t know why this is happening, but hope it continues. No idea how long I’ll be on this regimen.
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2 ReactionsI have what is currently diagnosed as EPI due to reasons unknown (idiopathic). Started Creon about three years ago, which reduced the severe diarrhea and gas, and I regained energy after three months. However as time went on became incredibly constipated, which my urologist blamed for the the occasional loss of bladder control when sleeping. The constipation also would result in incidents of overflow diarrhea that were sudden and with no warning (the only warning being the normal upset stomach issues which is intermittent). On one occasion I had lower stomach pain in my groin so severe that the GI doctor said it was ok to take a Ducolax if necessary to avoid risking impaction and dealing with removing it digitally. After taking Ducolax I will usually be much better for a week, occasionally longer.
The other thing that happens is that I will suddenly have severe diarrhea about one or two days a month, like pure water, with leakage up to 12 times a day. Then it suddenly goes away, and I am back to being constipated within a few days. The only thing that helps at all is a low fat diet, little or no bread / carbs, avoiding overeating, avoiding dairy, and exercise.
It is disappointing as I had thought the Creon was about to eliminate most or all embarrassing issues of incontinence due to EPI, but that has not been the case. At 5 months into taking Creon, and several major incidents I realized I had to wear some sort of incontinence products. That part of the condition has been hard to accept for my esteem but at this point (I am 55 now) I don't really have as much choice in the matter as I thought I did, and I am trying not to dwell on it. The Creon seems to help with my energy level a great deal, and as the doctors were initially concerned this was cancer related, I am trying to be grateful that this is the only lingering issue.
Having said that I would like to get it better under control. I am trying to get the doctor to prescribe more 6,000 mg doses of Creon to take with smaller meals throughout the day, as I am hoping that will help improve things. Anyone have any experience with this, or these symptoms, and having them improve?
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1 ReactionCelia, I would add OMG, to distressing. 17 years of trial and errors, and errors and errors... and idiopathic treatment. Vitamin B-12, what qualifies as mega dose? How long? Pills or injections? My B-12 levels have always been on the high side. Did all the specialists you saw, give you any good advice? Any connection of CIC with idiopathic pancreas issues?
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
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2 Reactions@shelleyw - EPI is Exocrine Pancreatic Insufficiency, the inability to properly digest food due to a lack of digestive enzymes made by the pancreas.
6,000 units of Creon are not enough, is that what you takes with meals? It should be dosed by your weight. I weigh 130 lbs and I take the 36,000 tablets and one with each meal and snacks.
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?
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1 ReactionYour symptoms sound daunting. My mom used to have similar ones. She was diagnosed with IBS fluctuating between diarrhea and constipation. She’s normal right now. No idea why. The only change is her B12 treatments.
Have you considered going to Mayo Clinic?
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1 ReactionI 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.
I am looking at B12 treatments as well.
I am in touch with the doctors I have at a research center (affiliated with a famous medical school) in the city I am in; I am happy with them. While I respect the Mayo Clinic a great deal, I am not sure the extra expense would yield more information than I am currently getting, as I have two great researchers as it is (I am blessed / lucky to have been able to work with them).
As you know, there are too many bills and not enough time, and since the Covid era finances have never recovered 100% for me. Unless there is something more dramatic in the future I will continue to work with the team that I have. My energy levels are better, it's the bowel and bladder issues that are stressful. Considering that the initial concern was cancer, intermittent incontinence I far less serious, but can be very emotional to deal with at times. I am trying not to let it control my state of mind, and it is easier than before but still a challenge to accept.
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