Posts: 47
Threads: 8
Joined: Dec 2015
Welcome, everyone. I'm so glad to see so many people joining here. Our CIL babies take us on a very special journey, one that we could never experience without them. It is emotionally exhausting, sometimes physically exhausting, and enlightening to no end. Every one of you is a very special person for choosing the hard road and not giving up quickly. CIL moms and dads are heroes, in my book. Glad you are all here.
I'm going to open a new forum today for technical questions. Will be making additional changes here over the next week or so to tweak this place and get it the way I want it. If anyone has any questions about how to do something, please let me know in the technical questions forum and I'll do my best to figure out an answer to your question.
Posts: 1
Threads: 0
Joined: Jan 2016
Hi, I'm Karen and I just lost my miniature dachshund, Lola. She was diagnosed with Lymphangitis with Lymphangiectasia and IBD in 2012. It took six weeks of tests and procedures for her critical care vet to make the diagnosis. This site and the original site were very helpful in dealing with the diagnosis
Posts: 47
Threads: 8
Joined: Dec 2015
Welcome, Karen. I'm so sorry for your recent loss 
Posts: 1
Threads: 0
Joined: Jan 2016
I am Ruby's mom. She is a 10 year old Boston Terrier who I adopted 5 years ago. She was in really bad shape at the time. I had gotten her healthy again until May of 2013 when she was diagnosed with Pancreatitis. After that, she slowly & steadily declined. She lost weight, going from 15 1/2 pounds to just over 11 pounds & her protein levels dropped until they were outside of low normal ranges. Her vet exhausted all the tests & procedures that could be done in the office. Ruby had to go see a specialist where she was eventually diagnosed with CIL in October 2014. Since the diagnosis, we have been unable to get her stabilized. So far, it has been a long, exhausting, frustrating & expensive battle. She can't catch a break and develops one complication after another. She has been on different combinations of Budesonide, Prednisone, Prednisolone, Azathioprine, Atopica, Metronidazole, Cerenia, Denamarin, Vitamin K, Vitamin B-12 injections, Probiotics, etc. Her liver enzymes have been dangerously high for a while now. Most recently, she had bleeding issues related to low clotting factors from the liver damage. She is also getting urinary tract infections from the constant diarrhea. I was following Louie's struggle with this disease on Facebook. Little did I know, a short time later that I would be struggling with the same issues. I want to thank Louie's mom for all of the support & information so we don't have to struggle with this horrible disease alone!
Posts: 3
Threads: 0
Joined: Jan 2016
Hi ....I'm Bodi's mum. He was on a similar cocktail of drugs for months though he did not have liver complications. Just the timing alone of administering all the meds is so time consuming. To be honest if we had known initially how expensive and difficult the process was going to be, I'm not sure if we would have proceeded with the treatments. I am glad we did of course, perhaps because we have had a good outcome so far. Bodi only takes one Atopic pill a week now and he is a an otherwise healthy and active 6 year old. It is so difficult to go through this, knowing that the outcome is uncertain. You have my utmost sympathy and respect for struggling through this.
Posts: 3
Threads: 2
Joined: Jan 2016
First, thank you to Louie's Mom for setting up this forum and the info-packed website that's become a daily check-in for me.
Macy is my 9y.o. 60+ lb Pyrenees/Border Collie mix that I've had since she was rescued at 3 months. She's my heart, my best friend, and my only family while I'm in graduate school 1500 miles away from my family and friends. I first posted to the blog on Christmas Eve, when I sat in despair watching her take every labored breath. Thanks to the folks who responded to me that night. <3
Macy has the non-biopsy diagnoses of CIL and (they suspect) IBS. I'm grateful that her vet picked up on my ignorant aside that she had been drinking 4-5x as much water as normal back on Dec. 18th when I took Macy in to get checked for what turned out to be simple reverse sneezing. My overreaction to that (I didn't know dogs her size and nasal structure could reverse sneeze) probably saved her life, since I was booked on a flight to leave on Dec. 22nd for 2 weeks, leaving Macy with a friend.
But the day I was supposed to leave I got the call from my vet that her bloodwork had come back with alarming numbers -- things that didn't make sense to me at the time, but made my vet suggest I get her in for an ultrasound ASAP the next day. So I cancelled my flight when she explained that Macy's albumin level (1.1!) meant she was very sick indeed, even if Macy was presenting as healthy. Mostly. (I took her in for the recommended bloodwork on the 21st when Macy started having "accidents" in the house on the 19th and 20th.) The ultrasound on Dec. 23rd showed no tumors but a thickening of the intestinal wall that supported the CIL diganosis. We started her on RC GI Low Fat dry food, weekly B12 shots, and 40mg of Prednisone. I spent the holidays here alone with Macy.
A week later, I took her back for follow up bloodwork. Her albumin had only increased to 1.5, and she was basically incontinent (urinary only, thank goodness). But urinalysis and kidney & liver values were in the normal range, so we dropped her dose to 30mg. A week later decreased to 20mg. She continued to gobble up her food, and only had one episode of diarrhea. I consider myself lucky that she's not vomiting or having constant diarrhea, the horrible symptoms that so many of you and your poor pups have to contend with. Nonetheless she's lost so much weight (almost 10lbs since December) and is super lethargic and confined to diapers at bedtime or when I have to be on campus for more than a couple of hours. Yet I hoped to get good news yesterday for her 1-month bloodwork....
And yesterday her albumin was only 1.6. My vet wants to put her on Atopica or the cheaper version (student budget, amen for student loan money right now) and maybe something for the incontinence. But thanks to THIS WEBSITE and all the wonderful pet parents here, I knew that I wanted to try to see if a dietary change would help first -- wanting to avoid even more side effects from medications. So yesterday she started the RC GI LowFat CANNED food, to see if a non-chicken protein would be more absorbable for her system. I'm thinking I'll take her back in next week for bloodwork to see if there's any improvement, and then maybe try another RC food that my vet and I selected (one of the hypoallergenic lowfat versions). If diet seems to be working, then I'll devise a longterm more affordable diet plan. But today I'm just keeping a close eye on my puppy and hoping she gets better.
Sorry for the long post!! Y'all are the only people who understand what this is like and the only ones who might "listen" to me just express my concerns -- since my mom seems to be the only person who gets just how scary this is. Not just an "upset tummy" that gets fixed with medicine, but a fatal disease that's difficult to explain to anyone else.
Anyway, thanks all. Even if no one responds to this it helped to share it! <3
Posts: 13
Threads: 2
Joined: Jan 2016
Macy's mom, after spending about 1/2 an hour replying to your message it seems I typed it in the wrong space and when I hit return it erased it all. Frustrating. Well I had so much in that message. I almost want to tell you just to call me! I too feel comfort from this site. My Dog Darby passed just two days ago. I am not a vet so I am only speaking from experience with my dog. I do recommend starting your dog on Atopica (cyclosporine) if his albumin is so low. My dog was on predinisone and it was not controlling the disease. He was diagnosed by a biopsy at Texas A&M and by then the disease was moderate. We started with prednisone. When this did not bring up the albumin we started adding other meds, Metrodiazole, then changed to Atopica, then added others and doubled the Atopica. Food is a very important factor but the drugs are needed to help control and stabilize the gut. After his correct diagnosis, and so much time before that was wasted with incorrect ones, he was put on Royal Canin. Even this had to much fat. So we had to resort to cooked meals. Chicken and Rice and then the basic white fish and rice. You need to make sure that the cyclosporine is a MODIFIED version. I am sure your vet will know this. Also the cheapest one our vet found was by Actavis and was $20.00 a box. I don't know if I am missing anything from my previous reply but I usually copy just incase something goes wrong. I hope my experience can be useful to someone here at the site. I too get comfort from this site.
Posts: 3
Threads: 0
Joined: Jan 2016
(01-20-2016, 10:39 AM)macysmom Wrote: First, thank you to Louie's Mom for setting up this forum and the info-packed website that's become a daily check-in for me.
Macy is my 9y.o. 60+ lb Pyrenees/Border Collie mix that I've had since she was rescued at 3 months. She's my heart, my best friend, and my only family while I'm in graduate school 1500 miles away from my family and friends. I first posted to the blog on Christmas Eve, when I sat in despair watching her take every labored breath. Thanks to the folks who responded to me that night. <3
Macy has the non-biopsy diagnoses of CIL and (they suspect) IBS. I'm grateful that her vet picked up on my ignorant aside that she had been drinking 4-5x as much water as normal back on Dec. 18th when I took Macy in to get checked for what turned out to be simple reverse sneezing. My overreaction to that (I didn't know dogs her size and nasal structure could reverse sneeze) probably saved her life, since I was booked on a flight to leave on Dec. 22nd for 2 weeks, leaving Macy with a friend.
But the day I was supposed to leave I got the call from my vet that her bloodwork had come back with alarming numbers -- things that didn't make sense to me at the time, but made my vet suggest I get her in for an ultrasound ASAP the next day. So I cancelled my flight when she explained that Macy's albumin level (1.1!) meant she was very sick indeed, even if Macy was presenting as healthy. Mostly. (I took her in for the recommended bloodwork on the 21st when Macy started having "accidents" in the house on the 19th and 20th.) The ultrasound on Dec. 23rd showed no tumors but a thickening of the intestinal wall that supported the CIL diganosis. We started her on RC GI Low Fat dry food, weekly B12 shots, and 40mg of Prednisone. I spent the holidays here alone with Macy.
A week later, I took her back for follow up bloodwork. Her albumin had only increased to 1.5, and she was basically incontinent (urinary only, thank goodness). But urinalysis and kidney & liver values were in the normal range, so we dropped her dose to 30mg. A week later decreased to 20mg. She continued to gobble up her food, and only had one episode of diarrhea. I consider myself lucky that she's not vomiting or having constant diarrhea, the horrible symptoms that so many of you and your poor pups have to contend with. Nonetheless she's lost so much weight (almost 10lbs since December) and is super lethargic and confined to diapers at bedtime or when I have to be on campus for more than a couple of hours. Yet I hoped to get good news yesterday for her 1-month bloodwork....
And yesterday her albumin was only 1.6. My vet wants to put her on Atopica or the cheaper version (student budget, amen for student loan money right now) and maybe something for the incontinence. But thanks to THIS WEBSITE and all the wonderful pet parents here, I knew that I wanted to try to see if a dietary change would help first -- wanting to avoid even more side effects from medications. So yesterday she started the RC GI LowFat CANNED food, to see if a non-chicken protein would be more absorbable for her system. I'm thinking I'll take her back in next week for bloodwork to see if there's any improvement, and then maybe try another RC food that my vet and I selected (one of the hypoallergenic lowfat versions). If diet seems to be working, then I'll devise a longterm more affordable diet plan. But today I'm just keeping a close eye on my puppy and hoping she gets better.
Sorry for the long post!! Y'all are the only people who understand what this is like and the only ones who might "listen" to me just express my concerns -- since my mom seems to be the only person who gets just how scary this is. Not just an "upset tummy" that gets fixed with medicine, but a fatal disease that's difficult to explain to anyone else.
Anyway, thanks all. Even if no one responds to this it helped to share it! <3
(01-20-2016, 05:14 PM)jill Wrote: (01-20-2016, 10:39 AM)macysmom Wrote: First, thank you to Louie's Mom for setting up this forum and the info-packed website that's become a daily check-in for me.
Macy is my 9y.o. 60+ lb Pyrenees/Border Collie mix that I've had since she was rescued at 3 months. She's my heart, my best friend, and my only family while I'm in graduate school 1500 miles away from my family and friends. I first posted to the blog on Christmas Eve, when I sat in despair watching her take every labored breath. Thanks to the folks who responded to me that night. <3
Macy has the non-biopsy diagnoses of CIL and (they suspect) IBS. I'm grateful that her vet picked up on my ignorant aside that she had been drinking 4-5x as much water as normal back on Dec. 18th when I took Macy in to get checked for what turned out to be simple reverse sneezing. My overreaction to that (I didn't know dogs her size and nasal structure could reverse sneeze) probably saved her life, since I was booked on a flight to leave on Dec. 22nd for 2 weeks, leaving Macy with a friend.
But the day I was supposed to leave I got the call from my vet that her bloodwork had come back with alarming numbers -- things that didn't make sense to me at the time, but made my vet suggest I get her in for an ultrasound ASAP the next day. So I cancelled my flight when she explained that Macy's albumin level (1.1!) meant she was very sick indeed, even if Macy was presenting as healthy. Mostly. (I took her in for the recommended bloodwork on the 21st when Macy started having "accidents" in the house on the 19th and 20th.) The ultrasound on Dec. 23rd showed no tumors but a thickening of the intestinal wall that supported the CIL diganosis. We started her on RC GI Low Fat dry food, weekly B12 shots, and 40mg of Prednisone. I spent the holidays here alone with Macy.
A week later, I took her back for follow up bloodwork. Her albumin had only increased to 1.5, and she was basically incontinent (urinary only, thank goodness). But urinalysis and kidney & liver values were in the normal range, so we dropped her dose to 30mg. A week later decreased to 20mg. She continued to gobble up her food, and only had one episode of diarrhea. I consider myself lucky that she's not vomiting or having constant diarrhea, the horrible symptoms that so many of you and your poor pups have to contend with. Nonetheless she's lost so much weight (almost 10lbs since December) and is super lethargic and confined to diapers at bedtime or when I have to be on campus for more than a couple of hours. Yet I hoped to get good news yesterday for her 1-month bloodwork....
And yesterday her albumin was only 1.6. My vet wants to put her on Atopica or the cheaper version (student budget, amen for student loan money right now) and maybe something for the incontinence. But thanks to THIS WEBSITE and all the wonderful pet parents here, I knew that I wanted to try to see if a dietary change would help first -- wanting to avoid even more side effects from medications. So yesterday she started the RC GI LowFat CANNED food, to see if a non-chicken protein would be more absorbable for her system. I'm thinking I'll take her back in next week for bloodwork to see if there's any improvement, and then maybe try another RC food that my vet and I selected (one of the hypoallergenic lowfat versions). If diet seems to be working, then I'll devise a longterm more affordable diet plan. But today I'm just keeping a close eye on my puppy and hoping she gets better.
Sorry for the long post!! Y'all are the only people who understand what this is like and the only ones who might "listen" to me just express my concerns -- since my mom seems to be the only person who gets just how scary this is. Not just an "upset tummy" that gets fixed with medicine, but a fatal disease that's difficult to explain to anyone else.
Anyway, thanks all. Even if no one responds to this it helped to share it! <3
Hi Macysmom ....not sure if I'm typing in the right spot. My last attempt was blank. I just want to encourage you - I'm so impressed that you are caring for your pup while a student.
The protein levels can be very slow to improve so don't loose heart. Our English Springer Spaniel Bodi is doing well - it's been almost 2 years ago that he was diagnosed with CIL. He was on prednisone initially, but atopica was added after a couple of months and I think in the end, that is the medication that really made a difference. We found the prednisone side effects brutal. Bodi's protein levels were initially 9 (Canadian) so guess in the States that would be .9 and though there were several times when his protein levels dipped slightly, it was mostly a slow climb to 30 (3 in the States) which he has maintained for almost a year now. Bodi initially was on the tinned low fat RCI food too and gradually we were able to switch him to the kibble with the tinned only used now for treats. Every dog is different it seems and it takes a while to get the right combo of food and medication. All the best to you and Macy as you deal with this nasty disease.
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