New to EPI

Epi4Dogs Foundation Inc.’s mission is the advancement of science and education relating to EPI (Exocrine Pancreatic Insufficiency), yielding useful insights and positive outcomes in better managing EPI in dogs and cats. Our goals are to support and/or collaborate with veterinary EPI research and researchers, and to promote EPI awareness by educating the general public, pet owners, pet organizations, rescue and shelter organizations, veterinary schools and veterinarians.
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KNewman
Member
Posts: 4
Country: United States
State: Tennessee
Pet name: Ivy
My name: Kelsea

New to EPI

Post by KNewman » 14 Jan 2020, 19:51

Hello! My name is Kelsea and our little girl, Ivy was just diagnosed yesterday with EPI. We have had a rough couple of months leading up to her diagnosis, with emergency vet visits, emergency bowel surgery, etc.. We are thankful to finally have a diagnosis but overwhelmed with all the information we have been reading. I am a Physician Assistant student and having a hard time juggling school and her new diagnosis. I was hoping someone could help answer a few of our questions that our vet could not/didn't have an opinion on.

Ivy's TLI level from Texas A&M came back as <1 ug/L. She was started on PanaKare Plus Powder today. Has anyone had experience with this enzyme? I have also looked at Enzyme Diane and I will reach out to her tomorrow. I have heard about co-ops out there where EPI parent's can get enzymes at a lower cost. I was wondering if anyone has experience with this?
Ivy's Cobalamin level was 370 and our vet had us start Vitamin B12. I ordered it from Wonderlabs tonight. Do people report the same success with oral vs. injection formulations? She also recommended Famotidine, but I did not see that on any of the forums I read so I may hold off on that for now.
I am convinced she has SIBO (very loud stomach sounds and passing gas) but our vet did not want to give antibiotics. Will this hinder her progress? From what I understand, they are a cornerstone of therapy for EPI dogs and I am afraid my vet does not know much about EPI. Should Ivy's TLI and B12 be re-tested anytime soon?
She is currently taking FortiFlora probiotics, from what I understood on other forums, it is helpful for some dogs but not for others, is that true? I'm assuming it will take some time to figure out if she can tolerate treats in between meals? Is there any benefit to supplementing with Zinc, Vitamin E, Coconut Oil, etc.?
She is currently on Hill's Science Diet Sensitive Stomach Grain-Free, is there anyone that has had luck with this food? The bag says maximum 4% fiber. We are willing to switch to canned, raw, or another type of kibble. Whatever it takes to get our girl better!

Here is our Ivy girl (before she got sick).
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IMG_4208.jpg (4.77 MiB) Viewed 4189 times
Thank you so much for helping us out! This seems like a great community of people already and we already have a peace of mind knowing we are not alone in this.

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jilbert57
Staff
Posts: 2088
Country: United States
State: Washington

Re: New to EPI

Post by jilbert57 » 14 Jan 2020, 21:04

Welcome Kelsea to you and your gorgeous pup!
Yes, folks use that enzyme . Sometimes they switch to enzymediane.com as her enzymes are a lot less money.
She used to have an Epi dog Sarge. You would do good by talking to her. The enzymes should be dosed 1 level teaspoon per 1 cup kibble. Add small amount of room temperature water stir and let set. After 15 to 20 mins stir again and feed.
Your dogs B12 level should be up at 600 or more. The oral caps are great and can be used to bring the B12 up. Some folks follow the TAMU protocol of 6 weekly B12 shots.
Once your dog has been diagnosed Epi with the Tli test there is no need to retest. You can retest B12 after supplementation to see if it is raised but that is up to you.

As far as antibiotic you can wait to see if the food, enzymes and B12 help. If after a week or so
if poop isn't better I would ask your vet for a 45 day course of Tylan.
As for the food. It is grain free but peas, potatoes and pea fiber are pretty high on the ingredient list after chicken. This may be ok but your pup might do better with less peas, lentils and potatoes.

I have included a few links:

https://epi4dogs.com/epi-quick-guide-usa/

https://epi4dogs.com/enzymes-in-brief/

https://epi4dogs.com/sidsibo-in-brief/

https://epi4dogs.com/diet-in-brief/

Jill
My name is Jill and we live on the Hood Canal in Washington State. We currently have 2 Jack russells, TJ is 8 and Sadie is 2.

Mickey and his pancreatitis brought me to Epi4dogs.com site in 2012 to help manage it.
He lived from 6/99 - 8/2014

Mickey, Jack Russell. Chronic Pancreatitis. Dianes enzymes, 1/8t 3x/day with meals.

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Madelon
Staff
Posts: 1317
Location: Nashville, TN
Country: United States
State: Tennessee
Pet name: Doc

Re: New to EPI

Post by Madelon » 14 Jan 2020, 21:38

Hi and welcome to our EPI family! Oh my gosh that is one cute little puppy!!!

There are four cornerstones to properly managing EPI (I'll go into details about each one to help simplify things for you)

ENZYMES: Most of us use EnzymeDiane Pancreatin 6x (this is the cheapest enzymes and likely what you are referring to as a co-op but it's not really a co-op - Diane buys the enzymes in bulk and passes the savings on to EPI owners - her enzymes are sourced and manufactured in the US - no prescription necessary and shipped directly to your home) - recommended starting dose is 1 level teaspoon per cup of kibble, mix in luke warm water and then mix in kibble and incubate for 20-30 minutes before serving.

B12: EPI dogs need their B12 on the high side of normal 600 or higher and supplementing is for life. You can either do shots or get the WonderLabs Pet Factor B12 pills - they have intrinsic factor which helps with B12 absorption - no prescription necessary and very inexpensive

ANTIBIOTICS: If dealing with SID we recommend a 45 day course of Tylan and slowly wean off HOWEVER - in the beginning we recommend trying just enzymes, B12 and the proper food to see if the gut will correct itself - if you don't see improvement then you can try Tylan or Slippery Elm Bark Powder (recent research has shown great results using SE)

FOOD: We recommend grain free with 4% fiber or less and avoid peas and legumes - no prescription food is needed unless there is another underlying condition requiring it - feed 150% of the food for the weight y our dog should be but in smaller more frequent meals until they reach their goal weight.

We do not recommend using probiotics or any other supplements until your dog is stable - good poops and weight gain for at least one month.

I'll try to answer your specific questions now:

Antibiotics hindering progress - as stated above we recommend trying the enzymes, B12 and right food first then if you don't see good poops you can either try Slippery Elm Bark Powder or Tylan. https://epi4dogs.com/slippery-elm/

Retesting - there is no need to restest - once your dog is diagnosed EPI that's it - the only need to retest B12 is if you're supplementing but still seeing signs of low B12. I only retested B12 once after I started supplementing to make sure it was high enough - that was 3 months after diagnosis and we are almost 5yrs into EPI management.

Hills Science Diet Sensitive Stomach - check the fiber - if it's 4% or less and does not contain peas or legumes then it should be okay otherwise you might look for another food. Buy small bags until you find the right food for your dog. You'd be surprised how much changing the fiber even 1/2% can make - my boy cannot tolerate 4% fiber. You might try Sport Dog Food Elite - some of us have recently switched to it with good results and it does not contain peas or legumes. But there are other more accessible, affordable foods that have worked well for others,

I would not supplement Vitamin E, coconut oil, probtiotics or anything else at this time. Let Ivy get stable and then you can try slowly adding things if you want but being sure to follow the rule of only making one change at a time and waiting 5 days to see the results.

Keep a detailed journal of everything you give and everything that comes out and know you are not alone - we are all here to help!
Madelon, owned by DOC. DOC dx EPI 5/2015 = TLI < .4, B12 406; Folate >24. DOC taught me so much and together we battled and overcame EPI, food sensitivies, environmental allergies but we lost the cancer battle. DOC was dx with hemangiosarcoma 5/2022 and crossed the rainbow bridge July 24, 2022. He is and always will be the love of my life, my soulmate, my heart dog.

KNewman
Member
Posts: 4
Country: United States
State: Tennessee
Pet name: Ivy
My name: Kelsea

Re: New to EPI

Post by KNewman » 19 Jan 2020, 14:34

@Madelon and @jilbert57 - thank you so much for your responses! I have since had time to read through all the articles you have shared and I am beginning to feel more comfortable with the diagnosis!

One thing we have noticed since starting the enzymes and B12 is her breath. It is rancid and seems to be getting worse. Has anyone heard of this happening before? We aren't sure if it could be from her food. We started incubating her enzymes in lukewarm water for 30 minutes and then pouring them over her kibbles to see if it would help if her kibbles weren't soggy. We haven't really noticed a difference. Definitely considering a switch to Sport Dog Food Elite if this might be a dietary issue.

Her poops are looking almost normal and we are really hoping that is a good sign she will not need to go on antibiotics! We are somewhat concerned about stool/urinary incontinence. She continues to wake us up in the middle of the night or have an accident in the house even if she is left for a short period of time. She was fully potty trained and wasn't having any incontinence issues prior to this. Is there any advice or suggestions you have?

Thank you again for all your help!!

Tuckaboo Pam
Member
Posts: 1345
Country: United States
State: Florida
Pet name: Tucker
My name: Pam H.

Re: New to EPI

Post by Tuckaboo Pam » 19 Jan 2020, 15:05

Hi, Kelsea. I believe the enzymes are supposed to marinate with the food, to begin digestion. Maybe if you add a little less water the food won't get so soft, but at the same time if she is eating it I'd just let it go soggy. Especially if you see improvement. My Tucker's breath sometimes smells like dirty sneakers, no matter what I do, and the smell is a recurring question here and elsewhere. There may be some suggestions, but if you google EPI dog smell you can see there have even been research projects done on it (I just did it, and THIS foundation came up, lol). Sometimes it is not there, but I believe I may have noticed it more often at the start of his treatment. I am cursed with a nose that picks up everything, so I don't think it's just that I'm used to it. He just now got in my face, I took a whiff & smelled nothing, but it was bad yesterday. I haven't answered your question at all, but I do feel your pain! Take care---Pam
Tucker was a shepherd/lab mix--- TLI 1.3, Folate 9.7, Cobalamin 666, Lipase 38. Took Diane's Enzymes 4 teaspoons/day, Wonderlabs B12 one capsule per day, and Tylan 1/16 teaspoon/ morning (to hold SID at bay). Taste of the Wild High Prairie, 1 1/2 cups/day, with a total of 4 cups of Fresh Pet. Stopped eating everything in sight, and went from 60 to 85 pounds! Tucker was my boyfriend, and my husband was OK with that. Tucker succumbed to hemangiosarcoma, but we cherished every day we had with that wonderful, beautiful boy. I will always, always miss my sweet big boy.

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Miss Maddie Moo
Staff
Posts: 120
Country: United Kingdom - England

Re: New to EPI

Post by Miss Maddie Moo » 20 Jan 2020, 10:15

Hello smelly breathe and a smelly dog seems to be common, so nothing to worry about some people say it goes or we just get used to it people have said that once they add B12 it goes away here is the odor study that we conducted.https://epi4dogs.com/epi-odor-study/
Maddie DX April 2011 along with low B12 she was feed with a low fibre food below 3% , fat was not restricted ( she wasnt good on pea based foods ) She initially had a course of B12 shots weekly over a period of 6 months and then we used the B12 pills from Chemeyes in the UK . We used Panzym and slowly had to increase the dose as she aged when she was first DX she was 23kg but she gained weight quickly and got back to 33 kg .
Maddie gained her angel wings in Jan 2018 at the age of 10 to a condition unrelated to EPI.
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Madelon
Staff
Posts: 1317
Location: Nashville, TN
Country: United States
State: Tennessee
Pet name: Doc

Re: New to EPI

Post by Madelon » 20 Jan 2020, 21:46

Hi there again! Glad you've had time to read through the material. It seems overwhelming in the beginning but quickly becomes a new routine. The enzymes need to incubate with the food not separately. The smell you are referring to is likely the putrified food remaining in the gut and should go away with some time. Be sure you are following the protocol for the four cornerstones of EPI.
Madelon, owned by DOC. DOC dx EPI 5/2015 = TLI < .4, B12 406; Folate >24. DOC taught me so much and together we battled and overcame EPI, food sensitivies, environmental allergies but we lost the cancer battle. DOC was dx with hemangiosarcoma 5/2022 and crossed the rainbow bridge July 24, 2022. He is and always will be the love of my life, my soulmate, my heart dog.

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Jean
Forum Director
Posts: 1707
Location: South Liverpool
Country: United Kingdom - England
Pet name: Kara, lost 10th May 2019
My name: Jean

Re: New to EPI

Post by Jean » 21 Jan 2020, 05:06

Welcome from the Uk

The enzymes over here dont smell but Kara had issues once or twice and the vet suggested charcoal, you can get it from Amazon, might help

The one thing we learned was patience, and I am not that way inclined, the other thing was to keep a diary/ journal, rrecord everything

You have one very cute dog

J
My name is Jean we live in Liverpool in Uk

I am the Forum Director which I am very proud of

My Kara born 21 July 2009 diagnosed with EPI by cTLI test August 2010 TLI = <1...folate 14 Cobalamin 408, shot down to 94, b12 injections every other day

Lowest weight 39 pounds

We used Panzym enzymes, Tylan and Chemeyes b12 capsules

Sadly, on 10th May 2019, we lost her to DM


Jeanx

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Riley's Mom
Staff
Posts: 203
Country: United States
State: Virginia

Re: New to EPI

Post by Riley's Mom » 21 Jan 2020, 21:55

Hi and welcome to the forum.
You have gotten some good info, I just wanted to address the smell question. My girl smelled horrible in the beginning, like a combination of sour vomit and cat pee. Truly horrendous. During that period, I washed her bedding frequently and gave her baths as often as her skin would tolerate to keep the smell at a dull roar. Thankfully, as she stabilized the smell began to slowly disappear. Now she smells much better, when I detect a funny smell now it means SID is rearing it's ugly head and I need to address it.
So take heart, for MOST EPI dogs the smell gets better.
Elisabeth

Riley is a 10 year old Labradoodle. She was diagnosed with EPI in 2014.
She currently eats Taste of the Wild, I cup in the morning, 2 cups in the evening, each meal with 1 Wonderlabs B12 sprinkled over her dinner. Enzymes are EnzymeDiane, 1 tsp per cup of food, mixed in home made bone broth. No other supplements or meds at this time.
Riley currently weighs about 44 pounds, which is pretty heavy for her.

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