New to exocrine pancreatic insufficiency (EPI): What helps?

Hi @jewill, @gailfaith here, Thanks for posting your picture. Makes finding stuff from you easier! Of course my pic is of my service dog who I lost in Jan 15 to a stroke at age 13. He was an amazing dog and that's what others said about him. He was a breed champion short haired collie, with all of the Am Kennel Club's obedience titles, plus their Advanced Rally title and their Tracking Dog Excellent title. He was also a therapy dog, a hospice dog, a Reading Educational Assistance Dog, I trained him to be my service dog when I became disabled and we were a Crisis Response team with the local Emergency Management Agency. When he became my service dog, I think he laid awake nights thinking up with what he could do for me. He did things I never trained him to do. For example: I did train me to bring me a cordless phone in case I fell and needed help. One day I fell and hit my face on the floor and when I sat up I realized I was bleeding. I asked him to bring me the phone and while still sitting on the floor waiting for help, he brought me HIS pillow! Now try to remember to I have my cell on me all of the time and a fall detection device that also has GPS capability.

Hello @jewill Diverticulitis is a strange disorder to deal with, but I agree with what @gailfaith said in that the right diet can be a big help in managing symptoms once they start. I've also had certain foods that seem to trigger the disorder and once the abdominal pain starts, a clear diet and then adding soft foods works the best for several days. I have also found that putting my feet up and using a heating pad is very helpful as well. I have found that my attacks are also triggered when I'm overly tired so I try to watch the fatigue level too. The diverticula will always be there, but won't necessarily get inflamed. When the discomfort gets bad, I see a doctor and a course of antibiotics works quite nicely. I usually have one flare-up a year, so I just deal with it the best I can. Take care! Teresa

Diagnosed with Lymphoma B in February, 2017 - I jaundiced out in the hospital with a BILI @ about 17.5 - Med team inserted bile stents in my pancreas and liver ducts and the blood numbers are now normal - I have many of the symptoms and diarrhea and mix of loose stools along with weight loss lead he pack - I have just started a regimen of Creon 36,000 X 7 a couple days ago and also taking Imodium and Lomotil for the diarrhea . . . any suggestion if these should be taken together or should the Imodium/Lomotil combo be dropped and let the Creon attempt to do its job. Also next will be chemo session 4, R-Chop - someone please advise - have any idea how long before the meds show any appreciable improvement/kick in ? /hh

Hello Hank. I had a distal (tail section removed) panreatectomy in 2014 and while I experienced EPI prior to the surgery, it became worse after that. I also take Creon 36000 x 9, but have been taking it so long that I really do not remember how long before I noticed better digestion of nutrients. I do not believe it takes weeks, but more like a few days. Much will depend on how inflamed your pancreas is now; if that is minimal, then you should feel a difference sooner than if it is inflamed when you start the regimen. The enzymes, as I am sure you know, are used for the purpose of helping your pancreas in digestion, but also to give it a rest as it will not be attempting to produce those enzymes you are taking by mouth. Because of opiate pain treatment, I have never dealt with the diarrhea as my problem has always been he opposite. I realize we are dealing with opposite issues, but I take two different meds and, at times, two different over the counter products to try and achieve some level of regularity. I am sorry you are having such a difficult time and will certainly say a prayer for your treatment and recovery. I can't imagine having to live with the symptoms I have and adding chemo on top of that so good on you and Godspeed to wellness.

@gman007 - t/HANK/s for the feedback . . . I just got off Creon today . . . . the sides knocked me for a loop and Dr. Stomach moved me over to Prtyze starting tomorrow . . . the protein in my high carb high protein including the shakes etc. to gain weight have my weight on hold and can't move up the scale . . . the EPI just hit me over night and has been a struggle just like yours is . . . I appreciate the prayers and welcome them as a Believer . . . sending prayers out your way from my wife and I . . . some good news today though - Dr. Cancer believes the tumor is shrinking at a rapid rate and will do the PET in about 3 weeks. Downside is that I had to jump on antibiotics today because my white blood count dropped out of the acceptable range and that's the blood function that helps fight infection . . . . stay in touch @gman and God Bless you and yours /h

We are so glad to have you here on Connect, @huntsvillehank; and a huge thank you to @gman007 for jumping in with some valuable insight. I hope @jewill @bink @rickzaner, @codelue, @inhiscare2 will also join the conversation to share their experiences with Creon.
Here's some information from Mayo Clinic: http://mayocl.in/2nXx8gL

I would sincerely encourage you to view these discussions in the Cancer group too, as there are a number of Connect members talking about lymphoma; please feel free to read through them, and tag members:

Non Hodgkin's lymphoma: http://mayocl.in/2oGHEGm
Lymphoma in remission: http://mayocl.in/2oCd5Rv

@huntsvillehank, what antibiotics do you have to take?

@kanaazpereira - started on Levofloxacin - kept me up for the last 12 hours and I feel I've had many reactions from it last night - short of breath, throbing ears, rapid heart beat etc. - called the doc and waiting for a reply

I hope the new enzyme works much better and with minimal side effects. Thank God that the tumor is shrinking and I pray it appears even smaller or gone on your PET. Do you buy the premixed shakes or make them yourself. I use whey powder to mix my own and I have to avoid the carbs because part of my EPI is related to insulin production and mix mine with milk and ice and usually some veggies and fruit thrown in the blender. If you need the carbs, you could find a flavor that will mix well with a fruit juice and get even more nutrient rich calories into your body. I am probably telling you many things you already know, but just in case. Thank yo and your wife's prayers - I have been chronically ill for a little over 11 years and between my church, my Mom's, my Mother-in-Laws, and just friends, I would guess I have had hundreds of thousands lifted on my behalf. While I have not experienced a cure, I am supported by the knowledge that so many people are regularly thinking of me and lifting my needs above. Take care and keep us informed.

@huntsvillehank, please let us know what you find out after speaking to your doctor.

@kanaazpereira doc admitted me to the hospital last night and are doing the antibiotics by IV in addition to a few other maintenance things - hoping to get out in a day or two 🙂