Both IBS and PEI?

I have IBD (collagenous colitis) and EPI and just started Creon this week. Have you tried semi-solid foods? Obviously I don't know what you can tolerate or if you need to be low FODMAP, but something that is thicker might help.

I think I’ve tried everything. I’m staying on an IBS diet minus those things that I can’t eat with the lack of digestive enzymes. I take three 36,000 Creon with each meal and two with each snack. I’ve pretty much been on a FODMAP diet for the past five years. I still cannot digest green vegetables unless they are thick consistency of mush. I would be perfectly happy if I could drink a shake instead of a meal, but for some reason that doesn’t work. My Gastroenterologist says to take the Creon with the meal. My GP says to take the.Creon 30 minutes before the meal. On line, it says do not take the Creon on an empty stomach so that rules out what my GP says. A nurse told me at the hospital. They tell the patients to take two bites of food and then take the Creon. It wasn’t until I went online a few months ago that I found out I could not take in fiber with the Creon it would prevent it from working well. Online it says not to take the digestive enzymes with a lot of liquid at meal time. I’d love to be able to eat soup, but that’s a lot of liquid so I’m just gonna have to try it one day. I’m in physical therapy three days a week to try and get my strength back from breaking my hip and my arm. That means trial and error can only happen on a Friday night. Otherwise, it prevents me from going to physical therapy. Diet depends so heavily on things the Creon or my digestive system doesn’t tolerate. I called the company that makes the Creon and they told me I could drink as much liquid as I wanted to with a meal. And the other questions I had to ask them they referred me back to my doctor and that’s getting me nowhere. Right now I’m keeping my fat under 60 g a day, eating white bread and white rice and canned fruit. I just recently saw online where there is certain fruits, like pears, and peaches and other fruits with stones that have the wrong kind of sugar in them to agree with my IBS problem. Along with the digestive enzymes, I have added Bentyl, Beano, and GasX. Everything was fine for a while until I read that I could eat hard candy, Popsicles, and jellybeans without taking digestive enzymes. I think the jelly bellies did not get digested because I’m back to floating yellow stools. Today’s and I will be eating some green beans and roll. That’s OK. One of my guests can only drink through a straw so they’re a lot of people out there worse than I am. You have a happy Thanksgiving and thank you for replying to me. I think my biggest problem is that no one understands.

I am so sorry you are having such a rough time. And I'd go with what the gastroenterologist says over the GP anytime your gut is involved. The only thing I see you haven't mentioned that you tried is the low FODMAP diet. There are lots of resources on-line but the best is the Monash University in Australia appears to be the experts. They have an app that has a one-time fee of $8
and lots of folks with IBS get good results with this. I did not, but then I have IBD, not IBS. Worth a shot if you haven't already tried it.

I also have IBS and take Creon. My MD explain to me that I need to take one capsule of Creon 30 min before a meal so when I start eating, there are enzymes which will help to start digestion and the second capsule take when finished 1/2 of a meal. Don’t look on the Internet for health advice except Mayo Clinic, Cleveland Clinic or PubMed. Happy Thanksgiving!

Thank you for the advice on how to take the Creon! I’ll try that way and see if that works better for me too. About the sites online: I just use the mayo and Cleveland clinic. Are used to use other sites and maybe that’s where I got some bad information. Thanks again and have a happy Thanksgiving!

Thanks I’ll try the app from the University in Australia. And I have tried the low FODMAP diet. Just too many things on there that I can’t digest yet. Have a happy Thanksgiving.

@maltmayer I agree with I don’t think they understand. Unfortunately, lot of those are the physicians. They seem to go by a standard “book” that’s meant for everyone. I was just diagnosed in March which I diagnose myself. And called my Gastro doctor to ask for a test for EPI. I’ve had IBS for 30 years and I knew it wasn’t that they are different feelings. I think I may have had this since 2023 at least. I had an episode of about five days of volcanic diarrhea. Wasn’t necessary after I ate because wasn’t eating much at that time. I was actually in the hospital. But not for that, when there’s occurred. I questioned it then a couple of times. Nothing was said nothing was done. I guess because I wasn’t in there for that. It wasn’t their concern. I’m really getting tired of doctors not seem to care anymore not like it used to be you walk through that door and all you are as a paycheck to them. I have such tremendous gas with mine that stops me from doing anything. I don’t know how many times I have missed church. I’ve missed other appointments because of that. Any advice I sure would appreciate it.

@jewlebb4
Check out a product called Fodzyme. That plus low fat diet and Bentyl seems to get rid of the gas, bloat, and digestion. The Fodzyme company people are extremely knowledgeable and helpful! They told me that the one thing I couldn’t digest was cruciferus veggies (broccoli, asparagus, etc). They told me I needed an enzyme called cellulase. I found an over-the-counter The vitamin Shoppe brand of multi enzyme that contains this enzyme. I’m now eating green vegetables, salads, etc. I’m off the PEI medication most of the time and only use it if when I’m eating is high in fat. If they haven’t already done it, have them check you out forcrohns disease. It’s a form of IBS but more severe. Good luck!

These responses sound so much like what I have. Seeing doctors and having had multiple breathe tests, I found out that I have PEI, but also IMO. It appears that diagnosing these problems is difficult. The timing on food moving through the system can vary quite a-lot and at best it is slow. I found that the FODMAP info can be confusing at best - for example: some protein shakes are recommended on FODMAPs but when I look at them, they are quite high on sugar which is perfect for the Archaea in my gut. CREON seems to work ok if I take one with the first bite but I wait until about half way thru my meal for the second CREON. I stay away from sugar and I’ve starting taking Oregano Oil, Atrantil, Allicin, Berbedine and Ginger. Much improved but still not perfect. I use FODMAP as a guide, but not as an absolute. I’m still learning and altering my diet as I go but things are improving. I would think that finding exactly what your problems are is key, but difficult. Good luck.

I had the exact same problem. What worked for me was making my own low/no fat soup from chicken bone broth, vegetables, white rice, and egg whites. It's more of a stew than a soup, so not too much liquid. Store-bought soups have lots of chemicals and ingredients of unknown quality.