Post Ivor Lewis Surgery - feelings, hopes and fears

Thanks for your reply. Personally never really had probs eating. Started with sloppy food when I got diagnosis but now just eat anything. In my mind size of tumour must have reduced with chemo as swallowing has improved immensely during course of chemo. Have a ct scan in 2wks after last cycle. Obviously everybody is different but I’d like to think in time my life habits don’t change much. We’ll see. Cheers

Dear Pete,

I now realize that I had found your blog, waiting outside the surgery room for my husbands operation. The thoracotomy part of his operation to remove part of the esofagus was a last minute call, it was not planned like this in the beginning. So in the middle of the 10-12 hour wait they made me sign an additional waiver for this procedure, and whilst waiting I remember seeing your chest photos to get an idea about the incision and such. I would like to say once again how immensely grateful I am to all those people who have shared this vulnerable journey with the rest of the world. Your posts have cheered us on wonderfully during the first weeks of the recovery.

In line of sharing and as well as contributing to the content here, I would like to mention the progress we have had these past couple of days with our medical team. My husband has been worried about the downward graphic of his weight. He is showing real effort to eat as much as he could, but really, it has been impossible to stop to weight fall.

We were discussing this with the nutrionist, and after questioning about when would be the alarm bells for really low weight, she referred us to the gastroenterologist. After some long discussion with him, we have learned more about the chemistry of being 100% stomachless with half an esofagus and the new anatomy. For a better quality of life, whenever possible, he recommened to blend out the food. Just like your wife thougtfully did for you. Obviously, when you are eating out this is not possible, but at least for home cooked meals he suggested that this would improve the digestion and passage significantly. This may seem obvious, but then also one thinks that as time goes on you must also conquer solid food and keeps going at it. He said that in terms of quality of life, there is no medal for that, and whenever possible he should just take in food that is best state for his new anatomy. That aside, we have also discussed extensilvely the absorption of things, and he recommended my husband start with Creon. This is going to be taken with meals to make up for the lack of pancreatic enzymes. It turns out that the bloating, gas and occacional diahrroea is not due to the flora and fauna of the intestine, but rather due to the lack of enzymes that need to participate in the digestion process. They will also do a poop test in the following weeks to further understand what is going on. Hopefully with this medication they expect the overall absorption to improve and stablization in weight.

Our later chat with the nutrionist was a little bit daunting as she was quite blant about the weight gain. She thinks that it is very difficult to put it back on, and the aim should be maintain what you have. She also said that any weight gain would be around 200 grams per week if any. So when you think about the apx 10kg lost since diagnosis, at a stable rate it is at least a year to put all of it back on....

She also says that it would be impossible for him to pass for example two eggs for breakfast, and that he should stick to one. These kind of rigid statements frame things harshly and we would like to think that there is room in the future for larger portions. Really, one just wants to scramble two eggs for breakfast :)))))

They have also emphasized that light exercise is a must for a better recovery. So, no more napping all day, and to start with walking 10 mins, 15mins and then finally up to 30 minutes. They have told him to refrain from more than 30mins of exercise at this point.

There will also be a blood panel within two weeks to see levels of certin vit and minerals, etc.

So, armed with all of this I am really looking forward for things to get better for him on this rough path to new normal.

avw, by the way, they told us that after some electric tests the toxic neuropathy recovery is improving. So means one more month for those thioctic acid pills and then we will see. My husband is a huge lego fan, and cant wait for his finger tips to improve for better building experience

All the best,

Hi Oyita You are very well informed. Really interesting. Please pass on my best wishes to your hubby on his Journey. Regards Pete

Hi Oyita

I’m sorry for the delay in responding, but I hadn’t logged into this account for ages.

Re post op eating, it is unfortunately very much trial and error. It is very individual, and I don’t think the generic advice is bad, but it doesn’t necessarily fit everyone. My husband was lucky in that despite a TG, he was physically able to eat large portions quite quickly, about 3-4 months post op. However, eating caused huge anxiety, he was almost scared of food, and in the early months had huge dips in energy (dumping) and often diarrhoea after food.  It was frustrating that after getting a good size portion in, despite the anxiety etc, it wouldn’t stay in very long to be absorbed etc!

He lost about 20kgs from diagnosis to the end of post op chemo which started 7 weeks post op.  You don’t mention if your husband is having post op chemo but this definitely increased the weight loss issue.  Once treatment finished, he started to recover mentally, and within 6 months was eating anything he wanted, including sugary foods, steak etc.  The only thing that remains to this day is that he can’t eat and drink at the same time, and has to leave a 30-45 min gap.  He can have wine with food though as long as he sips it. All in all, a good result, far better that we would have predicted in the first few weeks after surgery.

i think the body needs to get used to the shortened digestion tract, and it takes time. The only thing to do is to keep trying and most people eventually find an equilibrium again and things start to improve.  Be patient, it is a very long road with bumps along the way, but one day you will look back and be amazed at what he can eat after starting with broth and jelly post op in the hospital.  Don’t worry too much about the weight loss, he can try to get it back once he stabilises.  You can also ask for calorific supplements from your hospital dietician although these didn’t agree with my husband, it’s worth a try.

ps. We just had Sunday dinner, he had a full adult plate and chocolate cake for dessert!

H 

I came to realise fairly early on that eating and drinking at the same time was not a good idea.  My portions are about the same as those of my 9 stone wife. I manage to maintain a more than healthy weight for my height which must mean in general I’m absorbing food ok - most of the time!

Dear H,

Thank you very much for taking the time to reply to me. I really appreciate it. Based on the clinical experience of our medical team, my husband recieved all the chemo pre-op. He was able to complete 7 cycles out of 8, as towards the last cycle the cumulative effects of toxic neuropathy and some edema on his lungs became critical. So they decided to omit the last cycle and go ahead with the surgery.

At that time we were really pleased that they were finished with the treatment and looking back, i am even thinking that maybe they could have stopped at cycle 6, but thats over now. I cannot imagine the burden of post op chemo as it would be very cruel for a patient that is recovering from this huge operation.

My husband also does get anxiety when it is time eat, and I kind of think that it is due to introducing new things to his otherwise regular plate from a day before. If he has one good day, then this is followed by two not so good days.. I do wish for him to be able to eat fairly better within 6 months. Meanwhile I am a little bit shocked about the whole absorbtion challenge that I have learned in more detail over these past few days. I don't know why but, due to they did not touch the pancreas and bile duct during the roux en y, i was not aware that the absorbtion would be distorted this much because the pancreas would not know how much enzymes to screte... This to me means that eventhough you eat so many calories because you will not absorb there is really not much point in investing that much energy in doing that. It is like you are a prisoner to your absent stomach that you have to be around food you can eat every two hours and it is a real challenge. 

I don't have any background in medicine, and in my naive way I would like to think that hopefully his body will learn to compensate for this lack of biofeedbacks over time. It could be like deaf people developing more of other senses such as hear or smell. It is how i imagine it in my head. The body must some how learn to signal the pancreas and the bile duct for whatever they have to do. Otherwise thinking that my husband will turn into a bag of bones will keep haunting me. I can now feel his ribs when i gently hug him, and it is so sad. My husband was quite slim to begin with, so there is not much more fat to lose from at this point.

Reading about the success stories on the path to recovery help us a lot, so for this I thank immensely for everyone who contributes to the content here. 

Lastly, If I may ask, was your husband able to go back to work? If so, how far out was he from his operation?

All the best,

Oyita

one more point to ask everyone in general:

so out of doctors recommendation my husband did have a go with a glass of coke cola with a meat heavy meal on couple of occasions where he mentioned that he had better time digesting it.

So, we were wondering about other peoples experience with coke and digesting meat?

It cannot be good for you, but according to him it does help to push things down... and so we were wondering maybe the acidity helps to compansete for the lack of enzymes or whatever.

Fizzy drinks do help push things down, which is great if one has the sensation that food is stuck. However pushing a load of solid food into the small intestine at one time can lead to dumping syndrome.

Also remember that there are something like 10 newly discovered hormones secreted by the gut in response to certain stimuli. I am not a medic so quite what they do I don’t know but they can affect other organs including the brain and affect things like hunger and mood.

Hi Oyita

it is frustrating, I know. It takes time, but most people do get there and find their own rhythm eventually. Putting on weight is hard but can be done once everything has settled, and how long that takes is very individual. There are people on this site who are almost back to their normal weight but over a few years rather than a few months. 

My husband did go back to work after around 6 months post end of treatment. He started with shorter days and 1 year post diagnosis was back at work full time. He had to eat more often at work, and got more exhausted than before because he was weaker generally, but was starting to get stronger again by around 1 year post op, when he unfortunately had recurrence in his lymph nodes.

he was 78 kgs (he’s 6 ft 2) and had just started putting on a couple of kgs. He then had to have more chemo, and dropped to 64 at his lowest (scarily thin, I know how horrible it is to watch your husband wasting away in front of your eyes). He is now clear again and trying to put on weight (he’s 68 kgs).

It’s slow, and hard, and you have to be patient and have the belief that he will get there. The body adapts. Creon  helps, as does time. Be glad that he’s thin but he’s here. The rest is small details that will improve.

Happy to help if you need any advice.

H

Dear H,

Thank you very much for the wonderful perspective and encourgement you have written beautifully.

Patience is one virtue to learn and cherish in this fast paced modern world, and more so for younger generations. It will be key to this recovery journey.

All the best for your husband as well! I cannot imagine how challenging it must have been to fight this monster once again. But hearing that he has beaten it is excellent!

Warm regards,

Oyita