Repost: Canine Intestinal Lymphangiectasia 101

This is an excerpt from a post written several years ago.

———————————–

 

This is probably the single, most important post I wrote during the past two years of operating the forum.  It’s a basic primer and FAQ rolled into one, based upon the collective experiences of myself and other members there.  It’s reproduced here, virtually verbatim.  If you are unlucky enough to have a dog with CIL, this might be the most important information you ever find on the internet:

Lymphangiectasia is not a disease that responds quickly to treatment. Many of us here have seen multiple ups and downs on the road to remission. This is not a disease where you can give a pill and see instant improvement. The improvements happen slowly, and it is not uncommon to see periods of inappetence (not eating), extended diarrhea with or without blood, vomiting, and numerous other apparent setbacks while they are struggling to get stable.

There are a few very serious rules of thumb that need to be kept in mind during this recovery period, and some commonly seen issues.

1) Getting food into them is not as important as getting the intestinal inflammation under control. Controlling inflammation effectively will only happen if they are fed the correct foods for their condition. Ultra-low fat diets are critically important. If lymphangiectasia is secondary to IBD, then avoiding triggering proteins is also critical. Feeding snacks or fatty foods to entice them to eat is never the right thing to do, no matter how thin and bony they may become. Until the inflammation is controlled, nothing they eat will get to where it needs to go to provide nutrition. All you are doing by feeding fatty or favorite foods is making your dog worse. Appetite can be improved in many cases using anti-nausea drugs, like Cerenia, and acid reducing drugs, like famotidine (pepcid). Put yourself in your dog’s shoes (pads? booties?) and imagine how your your appetite would be if you were vomiting and your own intestines were swollen and inflamed. There’s a good reason your dog does not want to eat! Be patient.

1a) The early stages of this disease are critical, and what you give your dog to eat during these early days is extremely important. Mixing foods is generally not a good idea, because your dog may be sensitive to an ingredient in one food and, if fed together, you will have no idea which food is causing the problem. Even tiny amounts of the wrong foods can cause major reactions.  The early days of this disease can be a race against time, and you need to observe your dog’s reaction to every single thing that is eaten. The only way to know if your dog is tolerating a food well is to feed that, and only that, and watch what happens.

Until you have them stable, treats should be completely off the menu. Once stability is achieved you might carefully experiment with low or no fat treats (Louie gets rice crackers for treats). Bully sticks and rawhides should never be given, as they are full of fat.

2) The recovery time (time to get them stable) is often long–six months, or maybe more. Prepare for a roller coaster ride, because your dog is not going to feel better overnight and, as mentioned above, there will be ups and downs. If you are reluctant to “put your dog through” what it takes to recover, please take a moment to think about what that means. No one here can make the decision for you to euthanize your dog. Many of us whose dogs have experienced remissions have had thoughts of giving up. Maybe most of us have. But in the end, many of us realized that what we “put our dogs through” was what it took to get them back to happy, stable lives. Please factor this in as you weigh your choices.

That said, not all of our dogs will make it. Only you know what’s best for your dog. If you are seeing improvements, even small ones, consider the above. But we understand that a dog that continues to decline despite all our best efforts may be more kindly served by that final, selfless act. We will support you here no matter what your decision might be. The purpose of this forum is to give you as much information and as many tools as possible so that you will be as comfortable as you can be with the decisions you make. 

3) Whatever we all thought we knew about feeding and nutrition needs to be left at the back door. This disease is not just serious, it is fatal if not treated correctly, and the recommended diets (the ones that work) will not contain all the fashionable ingredients that we’ve come to expect in quality foods. Not to put too fine a point on it, but I’d rather have my dog alive and eating a food that contains a grain than dead on a diet of organic, grain-free foods. That’s not to suggest that those things are not good things to shoot for when feeding pets, but here we look for stability above all else, and we’ve learned not to mess around with what works, once we’ve found it. Advice about feeding that is not appropriate for this condition or that may discourage someone from feeding an appropriate prescription diet is not acceptable here.

4) If you cannot bring yourself to monitor your dog’s food intake closely and to disallow virtually all treats and chewys, your dog is not going to make it. It’s really that simple. A lot of tough love is required.

5) We respect the knowledge and expertise of the veterinary profession, but a practical reality is that most vets will never see a recognized case of lymphangiectasia, and may rely on outdated information about treatment or consultation with colleagues who are familar with old methods. Most of the literature paints a gloomy picture of prognosis, which translates into some vets not trying very hard. To make matters worse, recent evidence suggests that some of the old-school treatments that are still being recommended may actually make your dog worse. Very specifically: Arm yourself with well-researched, current information before accepting advice to treat with Medium Chain Triglycerides (MCT) or coconut oil. And don’t be afraid to educate your vet about what you learn. 

Some vets seem over-reliant on anti-inflammatory drugs and dismissive of the important role that diet plays in treatment of this disease. Ask your vet (or other professionals) how many cases she/he has treated successfully and remember that the answers you need may come from many different places. Some of us here have been advised by our vets to euthanize dogs that eventually began to thrive. Every owner who comes here needs to realize that becoming your dog’s vocal and informed advocate is an important part of caring for a lymphie dog. Vets only have so much time to invest in learning about rare diseases they may never be asked to treat again; YOU have a responsibility to read and learn and to work to educate your vet. Your vet should appreciate this diligence on your part and, if they do not, you need to find one who does.

6) Many of us have discovered that our dogs do not tolerate chicken well. Therefore it is strongly suggested that chicken or chicken based diets not be fed unless you are certain it is not contributing to your dog’s illness. This is a particular problem with the Royal Canin dry formula low-fat prescription diets, which are made with chicken. One size does not fit all, however, so if your dog is doing well on this diet, please do not change it. Their canned formulas use different proteins, and are not a concern.

I wrote this post after answering the same questions multiple times and also after observing some common but potentially dangerous newbie mistakes and anxieties recur again and again.  I hope that bringing it out here to this blog will help to keep it in the view of those who will find the information to be of value.

— Louie’s Mom

 

5 comments to Repost: Canine Intestinal Lymphangiectasia 101

  • Shari Thompson

    Louie’s Mom—
    Thank you for this excellent, extremely helpful post. We have a basenji who was diagnosed with PLE the summer before last, when he was ten months old. The prognosis was quite poor, and he was put on a regimen of prednisone, cyclosporine and azathioprine. It’s impossible to get a pills into O but we were able to have his medications compounded by a pet pharmacy so that we can use a syringe and squirt them into his mouth. (It takes two persons, one to hold him and the other to do the squirting.) Also he was put in a strict diet: Royal Canin low-fat (canned and kibble) and Hill’s i/d low-fat, with rice, Metamucil, and a probiotic mixed in.
    Upon being diagnosed, O deteriorated steadily. A year ago, he was emaciated, he developed sores, fluid accumulated in his abdomen and had to be drained, and he was so weak that we had to carry him up and down stairs and take him out in a stroller. PLE is a tough disease to live with, as you well know—to begin with, O would get up several times during the night, to eat or drink or be taken out, and we were severely sleep deprived. Our vets, who are terrific, had to be realistic and told us to prepare for the worst; O wasn’t expected to make it to through the holidays. But then he started to get better, little by little. As you say in your post, it’s gradual, but over the past year O regained his energy and body mass and he now looks and acts like a healthy dog (his protein level is in the normal range) and he has very good quality of life, though his condition is, of course, chronic and he is still on medications and the special diet. Recently, we’ve added some chopped carrot and shredded lettuce to his dinner, and he loves them.
    How long this will last, noone knows, but we recently celebrated O’s second birthday, our vets call him”the miracle dog,” and the hope is to start cutting back, slowly, on his meds. What we have learned from our experience, thus far, is that O needed time and patience; there was no magic. PLE, as I’ve said, is very difficult to live with—it definitely takes a toll—and noone would have blamed us if we had decided to give up.
    It’s encouraging to know that Louie made it for five years after being diagnosed. Again, thank you for doing this blog and for being a source of information and support.

  • Sasha's Mom

    Thanks so much for this, Shari! I need all the encouragement I can get right now. The results of Sasha’s most recent blood work is that her protein levels are almost normal but B12 is really low so she got her first injection yesterday and will get an injection weekly for the next five weeks. She lost an additional 4 oz despite eating three good prescription meals per day for two weeks. Today was the first day in almost four weeks that she refused food. I had given her a Tramadol for pain yesterday, her first, and I’m not sure it’s caused this lack of appetite so will withhold. She’s incredibly weak — even the cats who we keep separated by a baby gate, are jumping over it and coming downstairs because they no longer sense a threat! We’re weaning her from 10 mg Prednisolone daily to 5 and started on Budesinone two weeks ago. She’s also on Metronidazole, Famotidine and Amoxicillin. It’s so good to hear about dogs who made it through and gained back weight and energy.

  • Annie's Mom

    Thanks for all of the wonderful and helpful information about CIL. My dog, Annie, was just diagnosed on Dec. 28/15. She hasn’t had a biopsy so I guess we’re not 100% sure it’s CIL, but her Albumin levels were off the bottom of the charts and she has all of the other symptoms. I am hopeful that we caught it early enough and that our treatment program will help her on the way to remission.

    She’s a mixed breed (Staffordshire Terrier, Beagle). She’s only two years old. She is a sweet and gentle soul who had a lousy start to life in a puppy mill followed by an abusive owner – she deserves a long and happy life!

    She started with diarrhea on Dec. 12/15 and it quickly turned to the consistency of chicken broth. The bloating started on the 12th also. Since then she’s lost 4 inches off of her neck as her body steals protein from her muscles to make up for the loss of Albumin. Measuring her neck is the only way to measure the loss of her body mass as the liquid in her abdominal cavity makes it seem as though she’s gained weight.

    She’s on Prednisone (20mg per day) for the intestinal inflammation and Metronidazole (500mg per day) to stave off any potential infections due to her compromised immune system.

    She still has an appetite, thankfully. Bulldogs typically have a very high pain tolerance and healthy appetites – so that’s an advantage for her. She’s eating Royal Canin G.I. Low Fat (both dry and wet). I’m giving her four meals a day because the volume of food is actually quite large (2 cups of dry plus a can of wet). She eats the majority of it. I’m also giving her a probiotic called ProGut Plus by Ceva (I was happy to discover it has 0% fat compared to other probiotics with higher fat levels due to the added flavorings). And I’m also giving her 1/8 TSP of Cinnamon per day as it is a natural anti-inflammatory (my vet has approved this).

    It’s been a few days since I’ve seen the “chicken broth” like diarrhea. It’s now mostly “chocolate milk” or “puréed soup”. I’ve even seen two semi-solid BMs since Jan 1st (yay!).

    I’m trying to walk her daily – although the walks are much shorter as she tires quickly. Winter has arrived in southwestern Ontario (Canada) so I’m bundling her up. Luckily our winter has been particularly mild so far and the forecast is looking bearable.

    Since she has a compromised immune system I am nervous about her contracting an illness so I’m keeping her away from other dogs who may be carrying bugs or viruses of any kind.

    She’s getting an ultrasound in a couple of days. I requested this as I want to rule out a punctured intestine. I keep thinking about this bone she ate at the end of September (a bone I bought from the pet store and assumed it was safe). It splintered badly and I wasn’t able to prevent her from swallowing the part she bit off. I’m super paranoid because the dog rescue organization that I volunteer for just lost a lovely rescue dog due to a perforated intestine (among other things). The ultrasound may also be able to give the vet some information that can help us.

  • Sharon Dodsworth

    Has anybody experienced blood in their dogs pooh? My Jerry is having his 1st flare up for 18 months and his pooh is really runny and has blood in it. I’m really worried as I have read that cancer is a secondary disease to IL. Does anyone have anything to share on this please.

  • Kelly Callahan

    thank you for the great article. A breeder friend forwarded it to me. My Ibizan, Jasmine, was recently diagnosed. What a nightmare. This was extremely helpful.