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

Posted by jewill @jewill, Dec 6, 2016

I was dignosed with e p i. Exocrine pancreatic insuffency in 2015 after having a severe reaction to premarin estergen cream then 2 weeks later i had an even more sever reaction to an infusion of reclast it is a biphosphonates l am severly allergic to phosphates, dr did not check for that. i had diarrhea lost 20 lbs destroyed 90 % of my pancreas dr gave me creon 3600 2 with each meal low fat diet that is all the information i got from him did research on web for diet and supplments .need a dr in austin tx that knows more about e p i would apprecate any info on this thank you jewill

Interested in more discussions like this? Go to the Digestive Health Support Group.

@kanaazpereira

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?

Jump to this post

@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

REPLY

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?

REPLY
@huntsvillehank

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

Jump to this post

@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

REPLY
@huntsvillehank

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

Jump to this post

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.

REPLY

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

REPLY
@kanaazpereira

Hi @jewill,

Here is some information from Mayo Clinic about diverticulitis: http://mayocl.in/1DZsj1Z
"Are there trigger foods I should avoid to prevent diverticulitis attacks?" http://mayocl.in/2o27J2a
"Diverticulitis diet" http://mayocl.in/1Fjc7O4

We have quite a few members who have diverticulitis and can share their experiences with you. Please meet @lindainarizona @wesbig @user_cha5e73f6 @retrebotic @akogut @disfraz1 @lynnkay1956, @allegro @aigimw @ michellr @peterhamilton @bakb @lshell @hopeful33250 @frane1939 and @dbwhitted @gailfaith.

You may also wish to view these discussions on Connect:
Mucusy blood on stool: http://mayocl.in/2oJDiAD
Diverticulitis: http://mayocl.in/2nIFdRh

@jewill, have you shared your concerns with your doctor?

Jump to this post

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

REPLY
@jewill

Thank you @gailfaith @jewill here i hope this is short lived also .

Jump to this post

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.

REPLY
@kanaazpereira

Hi @jewill,

Here is some information from Mayo Clinic about diverticulitis: http://mayocl.in/1DZsj1Z
"Are there trigger foods I should avoid to prevent diverticulitis attacks?" http://mayocl.in/2o27J2a
"Diverticulitis diet" http://mayocl.in/1Fjc7O4

We have quite a few members who have diverticulitis and can share their experiences with you. Please meet @lindainarizona @wesbig @user_cha5e73f6 @retrebotic @akogut @disfraz1 @lynnkay1956, @allegro @aigimw @ michellr @peterhamilton @bakb @lshell @hopeful33250 @frane1939 and @dbwhitted @gailfaith.

You may also wish to view these discussions on Connect:
Mucusy blood on stool: http://mayocl.in/2oJDiAD
Diverticulitis: http://mayocl.in/2nIFdRh

@jewill, have you shared your concerns with your doctor?

Jump to this post

I tried to share my concerns with my Dr but he was not very helpful the info on diet and supplements i got from the internet.thank you for the wed sights

REPLY
@jewill

<p>I would like any information on diverticulitis and exerine pancreatic insufficiency EPI. i read that protein powder might have triggered my recent diverticulitis incident.the gastroenterologist prescribed cripo and flagel i am allergic to flagel dr ignored warning on my chart. Cipro has serious side effects like tendon rupture in people over 60 i am 78. I am on a liquid diet with bone broth fresh vegetable juice .olive leaf for bacteria lot of vit a b c d e selenium grape seed extract and curcumin (CuraMed) brand milk thistle slippery elm trace minerals magnesium probotics. Collagen powder No dairy sugar or honey grains trying not to have candida..is there any one with any suggestions .i also have pain in my lower back that i think is related to diverticulitis. if any of this helps others it is helping me any suggestions are welcome june</p>

Jump to this post

Thank you @gailfaith @jewill here i hope this is short lived also .

REPLY
@kanaazpereira

Hi @jewill,

Here is some information from Mayo Clinic about diverticulitis: http://mayocl.in/1DZsj1Z
"Are there trigger foods I should avoid to prevent diverticulitis attacks?" http://mayocl.in/2o27J2a
"Diverticulitis diet" http://mayocl.in/1Fjc7O4

We have quite a few members who have diverticulitis and can share their experiences with you. Please meet @lindainarizona @wesbig @user_cha5e73f6 @retrebotic @akogut @disfraz1 @lynnkay1956, @allegro @aigimw @ michellr @peterhamilton @bakb @lshell @hopeful33250 @frane1939 and @dbwhitted @gailfaith.

You may also wish to view these discussions on Connect:
Mucusy blood on stool: http://mayocl.in/2oJDiAD
Diverticulitis: http://mayocl.in/2nIFdRh

@jewill, have you shared your concerns with your doctor?

Jump to this post

Hi @ jewill, @gailfaith here. Way back in the 70's, I had some friends over to lay a vinyl kitchen floor and one of the things I served was sauerkraut. Shortlly there after I had abdominal pain with fever in the lower left quadrant of my abdomen. After a day or two as best as I can remember, I saw my doctor and he admitted me in case it was my appendix, though on the wrong side. He brought onto the case a general surgeon and my gynocologist. I really like the surgeon. One day I took some mercurochrome and drew on my abdomen above the pain, a dotted line and the words, "to open cut on dotted line". The next day, when the surgeon saw that, he studied it for a few seconds and said that is exactly where I would make my incision if I had to!!! He didn't need to. When I was well enuf for more testing that is when they confirmed the Dx as diverticulitis. After a total of 8 days, I was discharged. There after maybe two or three times a year I would have another attack, but usually continued to work and it resolved itself. I would go onto a clear fluid diet like broth for several days, That went on for about 15 or so years. It has been years now since I've had another attack. In April of this year I went to Mayo for a parathyroidectomy and shortly after I got home, I again started with similar abdominal pain, thinking, it's just another d. attack. When the pain didn't go away for a week I went to the ER, and after some rays, they said it was a kidney stone, my first, not diverticulitis. What I find of interest, though is they know I still have multiple diverticula, but I have not had another attack for YEARS!!!!! In the beginning they said what not to eat,such as seeds, nuts, etc, but I eat anything with no problems. Trust your experience is also mild and resolves spontaneously. I don't remember if they ever put me on antibiotics, but I don't think so.

REPLY
Please sign in or register to post a reply.