Keep losing weight 10mo after esophagectomy

[Iramutiaras]

My father had his esophagectomy done 10 months ago, but he is still losing weight. He is scary thin now and im so scared. Seems like he still cant eat enough calories, plus he is severely depressed, which makes him feels too weak to exercise. Now he is having persistent cough and lots of mucus, im guessing its from acid reflux?? which makes him even more depressed and he eats even less now because he always cough after meal. We also found out that he is lactose intolerant, so i gave him prosure for nutrition (it says that it is lactose free on the can). I dont know what to do to encourage him to exercise..i read that exercise can get him out of gis depression and enable him to eat more, but just getting him to exercise is so hard because he is so depressed he doesnt feel like doing anything. Im considering acupuncture as i read that it can help with depression. Please help if you have any suggestion on what i should do to help him...

[MFH28]

Hi Iramutiares.

What your father is experiencing is all to common following this very complicated procedure. Weight loss is probably the most worrying factor he’ll have to deal with. I personally lost in excess of a quarter of my body weight. Exercise is essential to reduce the loss. Initially it is only just possible to place one foot in front of the other, but gradually increasing his exercise regime generally helps to stabilise and eventually increase weight loss. I am nearly six years post-op and have only recently stablised my weight. He/I will never regain pre-op weight but many of us likewise folk prefer the ‘new look’ we have.

As far as eating is concerned that too is a major issue we all face. It is essential that he tries to eat as much as possible. It is really hard to find the type of food that suits him as weight loss is usually reversed by eating lots dairy products in particular. I was told by dieticians that I too was probably lactose intolerant, but I was not. Our issues in that area is due to the operation complications. Was he lactose intolerant before the op?

I assume he has been prescribed the usual PPI medication to reduce his acid reflux. Is he sleeping upright in bed aided by additional pillows, V or Wedge pillowS really help? Does he take Gaviscon at nightime to stop the acid or bile rising?

Depression is something many patients, including myself have experienced. But he needs to be strong and get himself through it with help and heaps of encouragement from you and the family, that is important.

He will get through this but he needs to be positive and determined.

Hope that helps.

[Iramutiaras in reply to MFH28]

Hi MFH28,

Thank you so much for the reply. Hearing you doing so well gives me hope for my father's recovery. I read that many went through depression and severe weight loss after the surgery, but just seeing the extent of it is just so scary because he is small to begin with and cant really afford to lose more weight. Especially the depression..i try to encourage him everyday to atleast walk for a while..but sometimes he said he is too weak and tired to exercise and all he wants to do is just sleep all day, which ofcourse wont help much with his recovery..i just dont know how to get him out of his depression, lift his spirit up and motivate him to exercise more. We're considering for him to exercise with a personal trainer (just mild exercise), but with a trainer atleast he really have to do it everyday, less excuses..

As for the lactose intolerance, he wasnt lactose intolerant pre op, but after the surgery we tried giving him ensure for extra calories, but it makes him gassy..burps and passes gas alot, and makes him bloated..so we just guessed that he is intolerant now, as i read many do after this surgery. Now he drinks prosure everyday to add calories and he seems to tolerate it well.

As for now, for the reflux he is taking domperidone before bedtime and inpepsa (sucralfate suspention) half an hour before meals..seems to help a bit..

Thank you so much for giving us hope!

[haward]

I agree with everything MFH says.

It's vital to get back on your feet and exercise so that muscle can rebuild. Just taking good solid walks once a day will be a huge help. It will take time but simply walking around the block, then further, and further will build muscle and heal the damage to his core.

The burping and gas may be a passing phase. It's not a good idea to stop eating stuff that disagrees with you once. It helps to persevere and get your system to adjust. Just after the op the body seems to resist quite a lot of things but it becomes more flexible over time. I still burp more than I did and my system sometimes gets confused as to how to process food and I am more than four years on.

The depression is hell for everyone. I don't know what to advise. My partner just tolerated it, encouraged me, and after time it got better

The OPA is offering wedge pillows. Have you considered that?

Haward

[Iramutiaras in reply to haward]

Hi Haward,

Thank you so much for your reply. I will pass the message to my father and hopefully it can give him hope that there's a light at the end of the tunnel..and help encourage him that it will get better over time if he can push himself to exercise.

As for the sleeping, mostly my father sleeps on a recliner almost sitting up, only slightly reclined, but he still gets reflux and coughing..last exam shows that he has esophagitis, probably from all the reflux and coughing..

Hopefully his depression gets better over time, because im so worried it can make him lose even more weight..

Thank you! So happy you're doing so well! Hope my father will get better too..

[Spikey]

After my operation, I lost weight continuously for 18 months, despite generally recovering well. In total, like MFH28, I lost around a quarter of my pre-op body weight (and I was not overweight to start with). Part of the reason, so I was told, was a catabolic response to the surgery, i.e. in simple terms, my body was burning additional calories to repair the internal damage. It was nearly three years before my weight started to recover and, even now, ten years on, I am still literally a shadow of my former self. As well as regular exercise, two things that I found helped with my recovery were physiotherapy, to rebalance my muscles and get them working again, and probiotics, to help repair the damage to my digestive system caused by the chemotherapy and surgery.

10 months is still early days. Be patient and don't worry too much about the weight loss unless it leads to illness.

[Iramutiaras in reply to Spikey]

Hi Spikey,

Thank you so much for putting my mind at ease..i will try to encourage my father to exercise regularly and to never lose hope.

[milz in reply to Iramutiaras]

Just remember we in this together. *hugs*

[Iramutiaras in reply to milz]

Thank you for the comforting words!

[Mindcrazedbanjo]

I'm 14 months post op and was in a very similar position to your father. What happens is your digestive system closes down and it takes a while to get it fully functioning again. I took Acidophillis probiotic which helped reline my guts with good bacteria. I also started on soups at first. Every little helps, even if its just a spoonful, its all about getting his digestive system up and running properly. I ended up back in hospital with Anorexia, my consultant surgeon put it to me bluntly, he said ... "If you don't eat you'll die".

It maybe that he needs to go back in hospital and have a feeding tube fitted. I wish him the best of luck but he needs to be strong.

[Iramutiaras in reply to Mindcrazedbanjo]

Hi Mindcrazedbanjo,

Thank you so much..it helps to hear that what my father's going through is somewhat normal and many experienced the same. I will keep trying to encourage him..i hope he can come out of his depression and persevere.

[AoifeMcC]

I am back up at my pre-cancer healthy weight and even have managed to gain enough weight to have two children but I do focus on low volume and high calorie foods still and I had my surgery back in February 2007 (I had a total esophagectomy) with chemo first. 10 months post the surgery I was only about 7 stone and was badly underweight, it does take time.

[Iramutiaras in reply to AoifeMcC]

Hi Aoife,

Thank you so much! You've given me hope that it is possible to recover! Yes im also trying to give my father high calories low volume meal. May i know what kind of high calories low volume meals do you eat for example?

[AoifeMcC in reply to Iramutiaras]

I used to eat fish pate with mayonnaise just post the surgery, it does not sound great but it tastes wonderful I had mayonnaise with most things am also a type 1 diabetic so that complicated things a bit.

[Iramutiaras in reply to AoifeMcC]

Thank you so much, i will try incorporating fat into his meals too!

[lynnbibb]

Hi,

My husband is 9 months post op and struggles desperately with food. He was only 11 stone to start and weighs less than 10 now, it's pitiful to see. The eating is an ongoing battle and I think that in itself is cause for depression for post op patients ~ nobody but those having gone through it understand the impact on life for both patients and family!

Dave also suffers from constant air which results in the noisiest of digestive systems ~ embarrasing at times. I always sat he has tourettes of the digestive system!!!!

Excercise as everyone selse says is key to recovery and without our dogs, I don't think Dave would have made the recovery he has.

Best wishes to your Dad, and I hope his symptoms lessen soon and he improves emotionally. xxx

[Iramutiaras in reply to lynnbibb]

Hi Lynnbibb,

Yes my father sometimes have lots of gas too and we can hear his stomach rumbles and he burps a lot during meals too.

Thank you so much for your prayers, hope your husband is getting better and better everyday too!

I will pass the message to my dad and encourage him to exercise more.

[kiddy]

Hi I also lost 3 stone after surgery luckily I had put that on before to cope with it. Food is a problem I get dumping if I eat too much sugar or fat in a snack /meal. My Bowles are noisy especially at night. I couldn’t burp after op but now 18mths on I get little burps. Been told by dietician to have a SIBO test to see how much gas is in my system and how my body is digesting food. Also a stool test. I eat 6 snacks /small meals a day. Anything from a banana to small plate of meat/fish with mash etc.

I joined a Macmillan group for exercise. I had a contact at my local gym,(search on internet or ask at hospital) had a one to one then joined 4 other women diff cancer (breast). We meet every week and have become good friends. I got 12 sessions free was given a personal program in the gym. I now get reduced price 2.50 to do gym or a class like Pilates. Before that I tried to walk each day or if not wanting to do that walk up and down stairs ,each day a few times. I also saw a physio to give me exercises to build up my right op side.

I come on here and know I am not alone and also have been to OPA meetings.

We have to except we have a different relationship with food/drink our body works differently to before and can grieve for our old life. But we are alive. My husband suffered to we used a meditation app Headspace to help us relax.

Good luck

Debbie

[Iramutiaras in reply to kiddy]

Hi Debbie,

Thank you so much for your reply, from all the replies it seems that one of the most important thing in the recovery is to exercise regularly. I will let my father know and hopefully it can motivate him to exercise more.

[kierank]

Avocados are very high in calories and maybe worth a try . I start each day with 4 cream crackers and cheese . I also like a wafer ice cream . I sit or incline back slightly when eating as i think sitting up straight may compress the "stomach" . I have used a raised bed ie 8 inches or 20cm - and find that gives a very comfortable sleep .

[Debbiewallis]

Hi ....my husband Tony is 8 weeks post op this week and like you and everyone I think .... the weight loss is the scary and noticeable part ! Before the op he was around 12 stone and all through Chemo for most part looked well. But now .....he looks ill , he is just over 10 stone and worries the life out of me all the time ! It's a constant battle with food types and nausea and the dreaded " dumping" syndrome and " sneezing and coughing " with every thing he tries to eat ....and still gets stuck! You have to hold on to the fact that everyone says it's "time" that will help mend and heal .....and the love ❤️ and support we give ! Your not alone xx

[Iramutiaras in reply to Debbiewallis]

Hi Debbie,

Thank you so much for your encouragement and support. Yes, i read that it does takes time to heal..but i never thought it would take this long..10mo post op and my father still cant maintain his weight. Its really scary..hopefully he will get better and better soon and can start gaining..all the best for Tony! Hope he's doing much better!

Xoxo

[Debbiewallis in reply to Iramutiaras]

Stent being inserted tomorrow! Can't wait... Just want him to be able to eat xx

[Iramutiaras in reply to Debbiewallis]

That's great, hope it will help with eating..so he can get more calories and recover faster! Keep me posted! Hope to hear good news from you!