Esophagectomy issues. Advice or shared experience please.

[scooby2010]

I'm 4 months post op of my esophagectomy. The past couple of weeks seems like I've taken about 20 steps back from healing. Experiencing dumping after even the smallest of meals and pain/discomfort near the upper part of my "stomach" or what's left of my stomach and chest area. I was maintaining my weight until recently and I've started loosing again because I'm barely able to eat anything. I watch what I eat carefully and have even became vegetarian to see if that would make a difference. I don't know what else to do. There aren't may resources or blogs for esophagectomy besides the recovery process soon after. I haven't been able to find anything else farther out. The mass I had was stumbled upon after a CT scan was done after I had a car accident. My PC ignored my years of complaints of acid reflux and tenderness when she pushed on my stomach during my routine physicals. Any suggests, advice, or shared experience would be greatly appreciated.

[KfromUK]

Hi

As is always the first thought ... get back to your medical team and seek their advice. A CT scan or at least an X-ray should assist?

4 months is still early... but best to check.

On a practical level perhaps try to slow down eating ( if you can!) and remember to avoid drinking for about 30 mins before food and at least the same time after.

Hope this helps

K

[ccfc]

Hi,

I agree it is always best to get checked out but it is still very early days in your recovery. It’s coming up 8 years since my op but I remember in the weeks/months after mine it often felt like I was taking one step forward and two steps back. It does take time to find what, when and how much you can eat. I understand it’s probably not what you want to hear because if you are like I was you will want to get better as quickly as possible. Unfortunately it is a long road and most of us hit a few bumps along the way but you will get there. Best Wishes, James.

[scooby2010 in reply to ccfc]

Thank you James. How long did your recovery take?

[ccfc in reply to scooby2010]

I would say it was at least two years until I worked out the amount and times I should eat. It took longer than that for my fitness to improve and not feel so fatigued. Having said that, what I have learned from this site is everyone is different so my experience may be different to yours. Best Wishes, James.

[kiddy]

Hi

Yes get back to your CNS or dietician at hospital. Eat small but high calorie foods like cheese and biscuits. Snacking is best policy little and often. I couldnt eat high fat milk, yoguart etc as this caused me dumping and fatty meats. Again sip water only with food leave other drinks 30mins before or after.

Best wishes

Debbie

[scooby2010 in reply to kiddy]

Thank you Debbie. I need to get better on increasing my snacking.

[Mauser1905]

Hello Scooby2010

Welcome to the other end of the Oesophagectomy. congrats for surviving through.

its still very very early days for you. baby steps, body needs significant amount of time to adjust to the New Anatomy and you for the New Normal. Do not try to rush anything or you will be setting your recovery for deeper rollercoaster low.

Each day on its own merit. On average if you are having more good days than bad days, you are winning. Your own benchmark is pre-surgery of yourself; for you to compare. every single patient is unique, so are you.

Please visit opa.org.uk/ this website has got all the information you require. thye can also end you by email or by post should you require that way. (Cancer & Awareness Support Helpline: 0121 704 9860)

for dumping syndrome advice and other related downloads visit

opa.org.uk/downloads.html

look for this download for DS "Dietary advice for patients experiencing dumping syndrome after oesophago-gastric surgery"

Most importantly, this forum has ton loads of information of the symptoms you mentioned and real life experiences of the patients and how they have/are managing the same. Please use the search function of this forum.

DS (diarrhea) can be upsetting to your sustenance of weight.

See if your PC offers you Creon and Forceval on repeat ongoign prescriptions. Creon is enzyme to help digest the fats etc and forceval is a multivitamin and minerals nutrition supplement.

Avoid liquid before the meals, between and after the meals for at least 30 min. adjust as you feel right. take creon with acidic juice citrus and only one sip for the tablet to push down, nothing more during the meals. creon needs to be taken prior to meal, then in between the meal depending upon your fat/protein content. but not after the meals.

Weight loss I can speculate to attribute to the diet change and diarrhea mainly. It happens for most of us if not all. However please note if you have bleeding or blood in the urine or stools, fever and vomiting please urgent self referral is required to the AnE or GP.

Another complication to watch out for is the ADH, Acquired Diaphragmatic Hernia. in this the internal organs wihtin the abdomen cavity gets pulled into the chest through the diaphragm. This could be dangerous and requires immediate surgical intervention.

Essentially avoud any physical strain immediately prior to the meals or post meals, rest sufficiently, sometimeswalking, talking a lot can also trigger DS-diarrhea.

Food diary is also helpful to find out what triggers your DS. remember DS is not a single symptom but a combination of couple or multiple symptoms and most patients suffer some form of DS, in varying magnitude.

Immediate concern would be arrest the diarrhea, stabilise the weight loss. weight gain is not urgent priority neither a primary goal. Often than not, weight gain as primary goal in early phase of oesophagectomy recovery may give adverse outcome.

Stabilsie weight, sustain it, improvise self-control over the DS episodes and triggers. Once this is successfully achieved then you can try improvise on further outcomes in regards to the weight.

Hope this helps.

P.S. PC has been always subjective on picking up the Right patients in Right time; most of the time. Fortunately it was discovered by any means and this is indeed very fortunate news than many of the cases.

[scooby2010 in reply to Mauser1905]

Thank you for the info, I will definitely look into the sites.

[052517]

I remember that anything lactose was a trigger. The recommended high fat cream, ice cream etc.. made it worse. Try eating lots of protein like soft poached eggs, and cheese. Baby steps

[scooby2010 in reply to 052517]

I will definitely increase my egg and cheese intake for the extra protein. I’m ok with dairy but I realized this evening that heavy cream is not my friend.

[Nana2KK]

My husband is 4 months post op as well and having the same issues. Almost identical. Thanks for the input as we have been concerned that his weight keeps creeping down. I’m thankful for the question and these answers. It gives us hope to hang in there.

[scooby2010 in reply to Nana2KK]

I had my op on April 19th, at the peak of COVID due to an increase in complications and symptoms. I was in the ICU for 2 weeks afterwards because the 1st chest tube didn’t drain all the liquid from my chest so they had to put in another one. Then the nurses wouldn’t listen when I said I thought my sutures were infected. The NP for the cardiac doctor seen the infection and pushed and squeezed on the area to get out the puss and said I was good to go and I was discharged. I got discharged on April 29th only to be readmitted the following Monday due to the infection. I went to my doctor and he actually tried to cut out the infection in his office. I cried and screamed so then instead of continuing, he admitted me back to ICU. The next day he went in and cut out 3 sections of my side where the infection was. Finally went back home the following Thursday with open wounds and a home nurse to help change my wet/dry dressings each day. That pain of the dressing change was probably close to labor pains. I returned to work full time the beginning of June. I didn’t realize the recovery time would still take time. Thankful though to be alive and with my family. Praying for your husbands recovery as well.

[sperrygw]

Smoothies I had to put protein powder on shakes to

Maintain any weight

[Cygnet11]

Hi,

I’m now just over 6 months post surgery and just getting to grips with my new eating regime. I was fortunate enough to maintain my weight during chemo but I started to lose weight quite rapidly after surgery.

Sadly my consultant was a away on holiday for 6 weeks following my surgery and I was unable to see him. My problems stemmed from having a distorted and stenosed pylorus. Once I was able to get to the hospital it was a simple matter of having my pylorus dilated to the correct size. Just a simple procedure that was completed in a matter of minutes without any discomfort. The difference was staggering. I was then able to eat far more easily.

Sadly a few weeks later I had a bout of what I thought was dumping syndrome. I persevered for a while but things didn’t seem to improve with mornings being particularly bad. Although I made a mental note of what food I’d eaten I really wish I’d made a written food diary.

Much of the time I thought I was dumping was in fact down to the fact that I had become lactose intolerant which is apparently quite common following our type of surgery.

In hindsight it’s easy to recognise the difference but at the time I just thought it was something that I had to put up with.

Experiment with lactose free products. They so easily available at your local supermarket and really don’t taste much different to “normal” milk products.

Don’t get me wrong I do suffer from dumping but I am getting used to what to eat and what causes me problems and hence how to avoid it.

Hope this helps to point you in the right direction or perhaps help to eliminate any potential causes.

Don’t be disheartened, it early days yet ..!!

Best wishes,

Mike

[scooby2010 in reply to Cygnet11]

Thanks Mike for the advice. I don’t do much lactose, never eat fried foods, and actually I eat very little of anything because of the pain afterwards. I did speak to my doctor and he did inform me that after all the surgery and dilation of my esophagus, I have an ulcer. I’m back on my ulcer meds and if the pain doesn’t get better in the next couple of weeks, he’ll have to do another endoscopy to see if anything has changed. I work about 50hours a week and by the time I get home I can barely function because the pain and I’m just so drained. I’m trying to not get discouraged but it’s hard.