Could they save your dog’s life?
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Marley’s Story
Author: Emma Jane Hughes (Cornwall, UK), December 2017
Pet parent of Marley | Newfoundland | 9yrs old | Idiopathic Megaesophagus – diagnosis April 2017
I found myself scouring the pages of this site to try and learn all I could about my beautiful Newfoundland’s condition and how I could help him. It felt like we had tried everything and, although some things worked for a time, Marley’s condition seemed to be spiraling in the wrong direction. I was terrified and at my wits end.
Every time the vet would mention a feeding tube I would become very upset and I felt like I had failed my boy in some way. I resisted the tube for a very long time, fearing I would be doing the wrong thing and feeling completely overwhelmed. My partner James had even said that, by the time we needed to consider a feeding tube, it might be the right time to consider saying goodbye. Following our vet’s expert advice, we went ahead with the tube after much soul searching, stalling, ‘pros and cons lists’ and second opinions and, now, I couldn’t be happier. I wish we had done it sooner! With his feeding tube, Marley is now bright, lively and back to his old self – something I never thought possible after months of illness. After he had recovered from the surgery it seemed like Marley’s whole face had changed – his furrowed brow was gone and he had his twinkle back. It was the most amazing thing. It has of course been a tough road with many emotional and financial challenges and lots of hard work, but it finally now feels that we have turned things around for the better. Although every situation is different, I hope our positive experience can help other ME pet parents in some way. I have made 7 videos on Youtube to show you what we do each day (links below) but let me tell you more about our story…
Background and issues leading to our decision
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In April 2017, after years of trying to find out what was wrong, Marley was diagnosed with Idiopathic Megaesophagus (ME). Marley loved to swim and his diagnosis came after he woke us up in the night struggling to breathe. We later found out that this was because he had aspirated – the salt seawater had irritated his esophagus from swimming and caused him to regurgitate all night. We were encouraged to visit a specialist vet 2hrs drive from home who soon confirmed a diagnosis of ME through X-Rays and an endoscope. I was devastated. Our local vet at the time had very limited experience with ME and, it was only through seeking the regular help of the specialist vet that diagnosed him, as well as the help of others on the amazing Facebook Canine Megaesophagus Support Group, that we found the support we really needed.
or a while feeding Marley 3 meals of meatballs ‘posturally’ from a height whilst he ate in a sitting position worked ok, followed by 30 mins sitting time after each meal. We found that this, combined with antacids (Omeprazole and Zantac), a ‘Super Neck Hug’ from Wag Tail Farms worn all the time, thickened water using “Thickit”, and regular doses of Sucralfate given 1hr before meds and meals, reduced his regurgitation. It took us a long while to get to this point with trial and error and a lot of vet visits to ask about advice I had sought from other ME pet parents. Gradually this feeding method became less effective and Marley’s regurgitation worsened. We built a huge Bailey Chair for our giant 67kg boy and gradually trained him how to use it to get him more upright. Nervous at first due to Marley’s age (8.5yrs old at the time), size and his arthritis, we persevered and Marley did relatively well in his chair. On 12th July (our wedding day!) my boy became really sick and we rushed him to the specialist. Marley had Aspiration Pneumonia (AP), a kidney infection and was severely dehydrated. After being hospitalized for a week, Marley came home but didn’t want to eat regularly. It was a battle to get the lifesaving antibiotics down him and Marley would only eat minced meatballs and picnic sausages which aggravated his Irritable Bowel Disease (IBD), making his regurgitation more frequent (up to 14 times a day) and gave him regular diarrhea. Every time Marley sat in his chair I was terrified that he wouldn’t eat. He was loosing weight fast and was weak and tired.
After 6 weeks of this, our specialist suggested that a feeding tube would be an option to give Marley “a break”, but I was adamant that I wanted another week to see if I could try harder to make things work… and then another! In this time, we slowly managed to wean Marley off the food that was aggravating his IBD and back on to his normal kibble meatballs. After a huge uphill battle, we finally felt like things were moving in a positive direction again.
Everything changed the following week when we took Marley for an X-ray to make sure his AP had completely cleared. The X-ray confirmed this, however, to our astonishment, it revealed 13 meatballs stacked up in Marley’s esophagus, one above the other, 3 hours after eating. I was devastated again, especially as Marley was perky that day and seemed quite happy. If Marley could withstand this, what else had he quietly endured? I knew it was time for the tube.
Marley was still weak but coped with the surgery well. (I was a wreck of course after I had read and been advised about all the possible complications that could occur!) He had a temporary feeding tube fitted initially and later had a low profile PEG tube placed which we much prefer. Following surgery, Marley was at the specialists for a week whilst they checked his tube placement and gradually began introducing food and water through the tube.
When we picked Marley up, much to our surprise, he raced around the grassy play area outside. I can’t quite describe how much his face had changed. He was perky and had energy. His fur was smoother on his face and his ears relaxed. I was terrified again when I was shown his tube for the first time but this noticeable change had already made it worthwhile in my eyes. I instantly knew I had made the right decision for Marley and all I needed to do was get over my own anxiety about tube feeding. After several ‘wobbly’ weeks, and the helpful advice of another ‘tuber’ on the Facebook support group, I discovered that, in my experience, tube feeding is not the ‘big deal’ I had thought it might be and nothing went wrong with tube feeding overall despite my fears. The PEG tube port looks a bit like the toggle valve of a camping air mattress! The connecting tube from the body wall to the stomach is held in using a little doughnut shaped balloon filled with water – a bit like a ‘butterfly back’ on an ear piercing. It’s a tidy piece of kit and it’s very simple to use.
Here is a video showing how we prepare Marley’s food and feed him using the feeding tube.
Initial feeding after the operation:
Marley needed to be fed in small meals 5 times a day after the operation to help his body get used to this new way of eating. After several weeks we reduced this to 4 meals and hope to reduce this again to 3 meals a day once Marley has regained a healthy weight. We feed Marley his regular kibble, ground in a Nutribullet, mixed with water. We grind Marley’s medication (Omeprazole and painkillers for his arthritis) using a pestle and mortar and give this in his tube also. Marley has nothing by mouth except doses of liquid Sucralfate to help heal his esophagus when he needs it.
Healing after surgery:
It is important that you clean and dry the tube area well each day to prevent infection (as directed by your vet). Marley’s skin around the first temporary tube became infected but we treated this effectively using ointment and by ensuring the area was dry. Once the low profile PEG tube was fitted (to replace the temporary tube) the infection cleared up. I was worried about cleaning the tube site at first (I’m not used to this kind of thing) but now it is second nature like cleaning your teeth or brushing your hair in the morning!
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Protecting the tube site and useful things you’ll need:
- Tummy Band: Initially, whilst Marley was healing, he had bandages to protect his tube site around his tummy. These often moved around and another ‘tuber’ recommended we make a tummy band out of neoprene. We have experimented with neoprene weightlifters belts that we buy on Amazon (and cut to our dogs size) and softer cotton pregnancy tummy bands we buy online also to protect the tube site on walks. It is important that your dog doesn’t pull out their tube ports or catch them on anything (although they can be refitted at the vets). As Marley wears his Super Neck Hug and his soft cotton ‘pregnancy band’ at all times when he’s at home and his thicker, more protective, neoprene band on walks, this seems to suit our needs very well. Our specialist is now recommending the weightlifters belts to others.
- Blender / Nutribullet: We use a Nutribullet to grind Marley’s food into a powder and then add the water afterwards.
- Pestle and mortar: To crush medications into powder for tube feeding
- Neck hug: As before, to elevate your dog’s head when laying down/sleeping, reducing regurgitation.
Why we love the tube:
- Marley is no longer uncomfortable after he eats and has regained his energy and his regular weight
- The risk of AP is reduced as there is no food in Marley’s regurgitation, which is less frequent (and consists of saliva).
- If Marley becomes unwell, I can still give him his food, water and medications via his tube, maintaining his weight and keeping him hydrated. I don’t need to deviate from his regular food to entice him to eat.
- Marley does less upright time and this relieves pressure on his joints helping his arthritis.
- Marley adapted very well to his tube from the outset. He can smell his food at feeding times and feels full and hydrated after his meals. I was worried that he would try and ‘find’ things to drink and eat as he would miss the action of eating and drinking but this did not happen (he still licks up 20ml of liquid Sucralfate each day from a bowl). He stands still when we are feeding him and he even goes to his feeding spot when he’s hungry!
- I feel reassured that I have done everything I can for my boy to manage his condition. Once I overcame my own fears about tube feeding, it felt much easier for me than preparing meatballs and worrying about the repercussions of food getting stuck in Marley’s esophagus.
- We have seen a fantastic improvement in Marley and, after a very difficult time since our diagnosis in April, things are leveling out at long last!
Things I didn’t expect:
- The frequency of feeding at first following surgery (5 times a day) – you may need to make provisions to accommodate this. We are now reducing this slowly and hope to get to 3 times daily.
- How well Marley adapted to his tube feeds – very positive.
- The improvement I saw in Marley so quickly after the tube was placed.
- How well I adapted to the tube feeds (after a few weeks of anxiety as I adjusted)
- What a positive difference we felt when we moved from the temporary (more bulky) tube to the low profile PEG tube. Much easier to manage, clean and protect day-to-day.
Other observations:
- I share the responsibility for tube feedings with my partner and we have changed our work schedules around feeding times. This has sometimes proven difficult and we are hoping to reduce feeds to 3 times a day (but cannot reduce it to any less than 3). I don’t feel comfortable leaving Marley but we are able to travel with Marley if we have his food and feeding syringes. We have recently had Christmas lunch out at the pub – finding a quiet area for a quick tube feed before we had dessert! It worked fine and we just needed to ask for some boiling water to make sure the liquid food was at the right temperature. Just like having a baby I guess!
PLEASE ENSURE YOU WORK WITH YOUR VET SPECIALIST WHO WILL ADVISE YOU ABOUT THE BEST TREATMENT FOR YOUR DOG. Not all dogs are good candidates for feeding tubes and, like any surgery, the operation to place the feeding tube and recovery afterwards has associated risks.
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Scout’s Story
Author: Sarah Jameson, May 2014
Personal experiences with our ME dog and feeding by tube
Scout was a lurcher (a greyhound cross) and a rescue/shelter dog, so we knew little of his history. He was found as a stray and we adopted him 6 years ago. He was around 7 years old we think, when he contracted ME.
In June 2013, after several months of sicking up his dinner immediately after eating it (he would then re-eat it and be fine) he was diagnosed with acquired canine idiopathic (ie no known cause) Megaesophagus (ME), a condition we’d never heard of and my local vet had never treated.
At first, we managed the ME well with upright feeding of sloppy food (no bailey chair) from a bowl, but by October 2013, Scout was visibly losing weight through regurgitation (he was a lean dog anyway, being a greyhound type). We then started using the bailey chair, but we felt we were fighting a losing battle. We had tried wet food, meatballs, nutrient gels, high calorie foods, etc, etc.).
In June 2013, after several months of sicking up his dinner immediately after eating it (he would then re-eat it and be fine) he was diagnosed with acquired canine idiopathic (ie no known cause) Megaesophagus (ME), a condition we’d never heard of and my local vet had never treated.
At first, we managed the ME well with upright feeding of sloppy food (no bailey chair) from a bowl, but by October 2013, Scout was visibly losing weight through regurgitation (he was a lean dog anyway, being a greyhound type). We then started using the bailey chair, but we felt we were fighting a losing battle. We had tried wet food, meatballs, nutrient gels, high calorie foods, etc, etc.). By the end of November, he was very weak, very thin and frail and sad. We faced a stark decision – either to let him go at the beginning of December or fit him with a feeding tube to give him a lifeline.
It was the vet who had been treating Scout with acupuncture who asked me if I’d thought of a feeding tube. We thought long and hard – it’s a very big decision, but we were fully supported by both vets who had been treating Scout. We were referred to the vet school in Liverpool (UK) where we saw their top internal/gastric vet. He felt Scout was a good candidate for tubing and he was still just about strong enough to take the operation.
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So, Scout had a feeding (peg) tube fitted in December 2013.
Over time, Scout regained all the weight he lost – and virtually reached his full 20kg (he’d gone down to a very, very skinny 15kg). Sadly Scout died at the end of April after possible complications with his kidneys. I have written these notes to help other owners of ME dogs who are wondering about the possibility – and reality – of feeding tubes.
Although Scout has passed away, and we are very, very sad…the tube did give him a few more months of life with some good days and lovely walks and plenty of affection.
Peg Tube notes for ME dogs
(These notes are from my personal experiences, only. Always consult with your vet in the management of your ME dog. There is also a lot of knowledgeable information available on the ME Facebook pages – (linked on homepage).
Tube surgery
• There are 2 main types of tube – temporary and permanent. Scout had a temporary tube fitted – ie with a long, dangly hose which goes across the dog’s back. Although it is possible to get a permanent, low-profile (ie with no dangle hose) tube fitted, this needs discussion with your vet, since both types of tube have pros and cons. We elected to stay with the temporary tube. So these notes relate to temporary rather than permanent peg tubes.
• With Scout, the tube was placed endoscopically (ie using a tube passed down his gullet into his tummy). The operation does require a general anaesthetic (GA), which is always a risk factor for ME dogs due to post-operative aspiration pneumonia (AP).
• The tube came out near his last rib. He tolerated it all very well, though was very weak to start having contracted AP for the first time at the vets when having the op.
Tube management
ESSENTIAL! Be very, very careful that the tube does not come out
(particularly in the first 2 to 3 weeks of insertion, since it can then cause a serious infection/peritonitis). Never allow your dog to chew or lick any part of the tube and put on a belly band or coat/t-shirt so your dog cannot ever get to the peg tube. Clean any/all food spillages off the tube in case it attracts your dog’s attention (this info relates to the temporary tube, not permanent tube which does not have the hose).
Wound care
Change the bandage/dressing daily to ensure the stoma (tube hole) site keeps clean. Due to the way Scout’s tube was fixed with sutures (stitches), we were not initially able to clean the underside well and he did develop a nasty infection around the stoma site which required a course of antibiotics and a change in the cleaning regime. In order to do this the vets removed the sutures so we could clean under the clamp (the white plastic part that sits over the stoma), and around the site much, much more carefully. His stoma did discharge fluid every day (which apparently is normal), but when the infection started, this discharge really increased in amount and became bloody. So keep a constant check on this (ie daily).
Feeding frequency
We fed 4 or 5 times/day to start with – and slowly built up the feeds (your vet will give you instructions on this). Scout was a medium sized dog – 20kg ideal weight. We ended up feeding 3 times a day and he received 8-9 syringes of food per feed. Vet told us that 3 x day is probably minimum for tube feeding. Your vet will advise. The idea is to build the dog’s weight up slowly, over time – ie 6-8 weeks or more – if they have got down to a low body weight. We tied Scout up to be fed so he did not wander around. Some people feed from the bailey chair.
Food type & consistency
We fed Burns ‘active dog’ (ie higher calorie) kibble soaked overnight and blended with more water to a smooth, silky ‘soup’ so it went through the syringe nozzle OK. We found if we used recovery food (canned) this was slightly grainy and would sometimes block the syringe nozzle or the peg tube entrance. If the latter, we squirted some warm water in (from another syringe) gently to disperse it, but if that didn’t work, we’d use a tweezer point and gently wiggle it around to unblock the tube entrance. Some people use fizzy drinks (coke) to help disperse/break up blockages, but we never had to do this.
Syringes
We used the single use syringes, but managed to get several days’ use out of them before they’d seize up. We had 8 syringes in use at any one time (much easier than
trying to refill one each time). Syringes were 60ml capacity with a 2.5mm aperture. You get through a lot of syringes since they seize up after a few days. The syringes are single use ones (we didn’t find any multiple use syringes). We used to get about 4 or 5 days feeding from them (around 12 or 15 feeds) at most. Some syringes could be eased a little bit by washing in vegetable oil. It’s the plungers that seize up I think.
Nil by mouth
Scout took all medications via tube – antibiotics twice when he acquired Aspiration Pneumonia. The only other med he took apart from that was Ranitidine x 3 daily. Scout got all his food and water through the tube and officially had nothing by mouth. However, during a very bad bout of regurgitation we did give him sucralfate/antepsin by mouth to help soothe this foodpipe. We did our best to ensure Scout did not get anything by mouth – so did not leave food or water out etc. On walks, he did like eating sheep droppings. For some strange reason these were rarely regurgitated – we have no idea why. If your dog does hoover up food/droppings while out walking, consider using a muzzle with a solid end piece.
Bailey chair/elevation
Even though Scout was being tube-fed we did put him in his bailey chair after each meal for 15 mins. Not to help the food go down, but to help encourage saliva to drain down. Not sure if it did help that much, but definitely worth doing.
Teeth care
You still have to clean your dog’s teeth. Tartar builds up more readily than usual since they can’t chew on bones or kibble, etc, to clean their teeth.
Regurge
Scout continued to regurgitate saliva several times a week since this was not draining down due to his enlarged esophagus. We were warned this might be the case, but to be honest, we did not realise it would be quite so much.
Weight monitoring
While gaining weight, Scout was weighed once a week at the vets to monitor progress. If he lost weight we fed him up a bit more; if he was gaining, we kept on with the same regime.
Tube protection
You have to be very, very careful that when out and about the tube doesn’t get snagged on anything or that your dog doesn’t pull it out. Scout pulled his tube out after 6 weeks, so we had to start all over. This was because he was able to get to the tube. After that he wore a stockinette vest and a t-shirt making access much less easy. In the summer use a belly band type covering for the tube and the exit point. This is really important. You really do not want to have to go through the procedure more than once!
We did not know that the possibilities for Scout to have new tubes fitted were very low. He was a greyhound mix, so had a very large/long rib cage making access his stomach very tricky.
Considerations
• We thought very long and very hard as to whether this would be a good move for Scout. We got opinions from 2 vets who know Scout. Both said to go for it. Both said if Scout were their dog, they would do it. Scout was a good candidate for tubing, since he’s fairly calm and dependable (he’s 7), not too dizzy or rough and tumble or nervous, etc. You know your own dog the best. Ask your vet too, if you have a good one.
• If you go for the tube, don’t leave it too late – ie your dog needs to be strong enough to tolerate the operation and recovery. For the first day or two post op they can’t be fed very much until the tube is settled in.
• Beware that at first at least once back home, the management, although far easier than the by mouth method when your dog won’t keep anything down, is still quite intensive to start with, especially with 4 feeds/day. We both work full time (though we work from home) and we did find at first that it did take up a lot of time, but gradually it did get a lot better and we got quicker at the feeding and clearing up etc! Three feeds a day is a lot more manageable than 4, we found.
• Aspiration Pneumonia is still a definite risk even though your dog is being fed by tube. In fact Scout had AP 3 times since December – twice at the vets when being tubed and once at home. So you still must beware of this and act accordingly.
• Regurge – doesn’t necessarily go 100 percent, but it is reduced (due to food going bypassing the foodpipe). However saliva/mucous still does build up – in our case over every few days – and would come up. Scout did have some bad nights of regurgitation which took him a day or two to fully get over.
• Not being able to eat by mouth – This was a big consideration for us. Dogs love their food and treats and Scout loved his food. However, once peg tube fed, he had a lot more fuss & affection instead. He was amazingly accepting. We were fascinated to find that Scout was eager to have all of his meals (unless he was having an off day) and would readily go to his feeding place to wait for the syringe feed. He would stand pretty still and ‘enjoy’ it. Our vet said this was because his brain was receiving ‘I am being fed’ information from his stomach – so in fact even a tube feed was likely to be ‘pleasurable’ for him. This was good news.
• Costs – Scout was insured but the overall bill has been high – around £6000 (that is for 2 operations due to the tube being pulled out). There are the ongoing costs of syringes, dressings etc (covered by insurance if you have it), but again quite costly. We did find a much cheaper source of suitable dressings online – so don’t rely on what the vet supplies, which will be costly. Look around for cheaper alternatives.
• Your time. Peg tube feeding requires a commitment on behalf of the owner that you should not under-estimate – both for feeding and stoma care. We both work from home so could manage them. However holidays/days out/long journeys etc needed to be much more carefully planned than normal. And our visits to the vets increased.
• Apparently peg tube feeding can precipitate kidney issues. We did not know this until Scout became poorly at the end of April 2014. So discuss this issue with your vet.
We were glad overall we took the tube route for Scout. It gave him a few months of life he would not have had. He didn’t regain his old self 100 percent, but was not too far off on his best days. To see him up for walks again or doing a little jig and playbiting your hands when it’s dinner time or having a run in the field made us feel very proud of him and pleased we took the plunge. I hope these notes are of help to you if you are considering a tube for your ME dog.