Although 14 months post op, but only out of hospital 7 months because of many complications resulting in 5 months ICU, my husband is still feeling nauseous every day & suffering cramping & diarrhoea most days after small meals. He was 14.5 stone before surgery & now 10 stone. The surgeon says this may be his new weight.
Does anybody else suffer with diarrhoea on a daily basis & if so does it settle eventually. Imodium didn’t always help!
His feeding tube was taken out in October.
Thank for any advice
Rose
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Animalmadwoman
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It's called dumping syndrome. Its pretty common post oesophagectomy. Within the DS subsymptoms vary significantly within patients.
Weight loss is a given after oesophagectomy. New Normal, everything literally.
Eating is trial and error. Typically most people develop intolerance towards specific foods ,such as containing dairy, sugar, chocolates, gluten, lactose etc.
Keep a diary and try and weed out if something specific triggering diarrhoea dumping.
Given he had long hospitalization he seems to have taken heavy toll and his recovery with relevant to ICU stay.
Hi Mauser1905, yes, he tries hard to do all the right things re leaving a gap between eating & drinking , small portions etc etc, it settles for a while then comes back. The Imodium seem to take hours to work, even the instants. As you suggest, trial & error.His taste in food has changed dramatically post op , he used to love coffee, cakes, biscuits , chocolate & desserts , but now dislikes it all, he sometimes can tolerate a small spoonful of ice cream.
He wasn’t expected to survive after post surgical complications & was unconscious for 5 weeks, then sepsis, then pneumonia... the list goes on.
It’s heartening to hear that this is pretty common & it does settle eventually . I think the constant nausea the worst.
Rose, stay strong and optimistic. Those days shall pass too.
I was in coma for a month had failed most organs and I am still here alive and kicking. Doing my day job, travel internationally etc
It gets better, healing takes longer time, just top of my head I can work out that he will require much more time to feel better and body requires significant amount if time to readjust itself.
Take each day on its merit. Try to win daily battle. Most wins will be great overall.
Change of daily scene will be helpful.
On and on. Please have a read on this lovely forums old posts for similar themes.
Please dont be disheartened. This surgery is very major ones and complications have much more collateral damage, first hand experience. I am surviving to tell the tale.
But remember it gets better. Only takes time. Must manage expectations realistically and purely based on your own circumstances. Generic comparison can be misleading managing your individual expectations. So watch out that please.
Thank you for your wise & encouraging words . I makes a difference hearing you’ve had a similar ‘journey’ and that you are now thriving & even travelling the world for your work! That is great
Chemo, radiation, surgery, chyle leak, ICU, Sepsis, heart failure, blood clots in my lung and arm etc etc.
My surgery was Dec 2018 so your husband and I are about the same post timing.
I have a very sore back from being in ICU for months flat on my back. A lot of muscle waste.
I was beyond nauseous when I finally got home from the Hosptial and they tried everything to help me.
The only thing that has worked for me is CBD oil. After taking it for 3 days I got my life back, eating still an ordeal with dumping syndrome but by far the worst was the nausea.
I’m not sure what country you are in but if you can get cbd oil it is really worth a red hot go.
I was so bad I could not function but life is good now.
Hi Pam thanks for your reply. Nausea seems to ‘go with the territory’ & I think that’s what is most debilitating . Cleve ( my husband ) got anti sickness meds whilst in hospital , but when you look at side effects ... diarrhoea is one of them!
The one he has now is a small tablet called Prochlorperazine, a buckle which you put up between top lip & gum to dissolve slowly. He says it really helps.
Did you lose much weight Pam & are you able to eat as normally as possible albeit much smaller meals? We are in Southampton UK. ( New Forest) regards Rose
The nausea hits some people worse than others. Mine was extreme and it sounds like Cleve’s is as well.
I lost 68 pounds and I am currently needing to work hard at maintaining my current weight.
I can eat almost anything in small amounts but there is no rhyme or reason to when or what will cause dumping syndrome. I have it at least once a day still. All to do with the vagus nervous being cut and how our bodies react to food in our system.
I used to be a lover of Pepsi and Coke but that is the one thing I cannot have at all. I cannot have carbonated beverages.
Horrendous disease and one of the biggest surgeries and recoveries a person can go through but still on the right side of the ground and enjoying the new normal.
Janashlin indeed! Life is precious. I often ask Cleve , when he is feeling sick & depressed if he would rather have died and thankfully I get an emphatic NO ! It’s as you say accepting and getting used to a new normal.
He doesn’t cope well with hot drinks tea or coffee or anything sweet, so no high calorie treats.
I had my esophagectomy done last April of last year for acholasia which I had for many years in which is a swallowing disorder I had for many years where the food gets stuck in the esophagus and the esophagus muscles no longer contract to push the food down and it was ready to rupture. I also had septis, pneumonia and also had a leak where the stomach is attached to the remaining esophagus. Was on a breathing vent for 5 days among other tubes. I would put dumping as a normal occurrence with this surgery. It is like having Crohn’s disease without the diagnosis. I also go for monthly dilations since I keep getting scar tissue due to the leak and have swallowing issues but till the cycle of the scar tissue is ended will need dilations in which I had 7 since surgery. Had triple bypass this pass November and wasn’t nearly as bad as the esophagectomy due to complications. My dumping has eased off a bit but after eating you get that full feeling and then bathroom time. Trying to keep my weight so have to eat foods with calories in which heart rehabilitation Has you doing the opposite. I’m unique and they understand my eating habit. I cut down on fried foods a lot and sugar products can cause dumping , I feel eating what you like in intervals so you feel yourself and enjoy your quality of life is important also. You are teaching your stomach to be your esophagus so it takes time but in turn it does take a toll on you and your body. Exercise is good also for digestive and blood flow. You and your husband will win this and the process is slow but in the end it will be worth it. Hang in there.
Thank you for your reply, no doubt about it , it’s life changing surgery!
In a way it’s reassuring hearing you all have similar after effects, unpleasant as they are for you.
Yes, he will hopefully find the strength of mind & body to get through it all. The main thing is against all the odds he survived. He does have the added burden of PTSD after so long in ICU , the delirium & hallucinations were horrendous.
We are both so looking forward to the Spring & better (dry🙏) weather. It will be good to spend more time outside.
I also had hallucinations also but only when I closed my eyes. It was loud and weird with people in the medical field standing over me. Sometimes I would see images of the devil, skeletons and very loud dreams in short naps. When I opened my eyes it would be gone.
Rose I have PTSD as well but it has gotten much better.
I went to see a psychologist for quite awhile and found it very beneficial to understand why and that it is normal given what we have been through to stay alive.
The nightmares were horrendous and flashbacks still get me but I am
Much better. Mine all seem to be icu related and I can’t handle medical scenes on TV and going to the hospital for scans etc require lots of self talk to get through.
Make sure you look after yourself as well. I am quite conscious of how hard our ordeals have been on our families. Some days it is harder to watch and support than being the patient.
We all need a decent spell of sunshine and just get out there in the fresh air
If anyone is at the stage with their treatment (not us)
Which allows them to think of holidays abroad contact MacMillan nurses they have a super book (free) with loads of travel insurance advice also how to travel with medications/stoma bags/travel help etc x
My op was 8 years ago and only one month in ICU so nowhere near as bad as you.
Over time I have tried many things to help the diarrhoea and the only one that has worked was called 'Energast' which my doctor recommended and it is not a drug. I do not know if you can get it where you live, taken daily it stops the Diarrhoea. Everything is so overwhelming when you return home but 'it will pass' and these three words I say to myself when things have got really rough - best of luck
We are in UK , but I will try & track down the Energast .
Wow & years post op that is brilliant !
No doubt about it though it is a horrible disease , but Cleve was lucky to be offered his surgery. Things have usually progressed to far before it’s addressed. I feel he was very lucky to survive.
I didn't have any complications post surgery but daily dishes was stopping me from getting back into life again. About 10 months after surgery I saw a gastroenterologist who suggested trying amitriptyline to slow down the bowel. I take 1 tablet at teatime and it works. Has been 18m now. Still the occasional day when it is a problem but on the whole life is livable. Imodium does help as well if I want to go out walking . If you havnt already, ask to see a gastroenterologist. They can arrange tests as well for food I tolerance eg lactose and overgrowth of bad bacteria.
Food diaries along side pro lens a
So may help sort it out though it is a pain to keep
Up. On bad days, kids just remind myself that I am lucky to be. Ali ve
Thanks for reply. He always took amitriptyline for back pain ( for years) which was very good . Unfortunately, after his many complications post op, one of which was bradycardia ( heart rate dropping suddenly) he now has been told he mustn’t have them as they would be dangerous. He does keep lamenting the fact that they were good though.
I’m pleased to hear that you had a good experience , although such a big op!
In time I’m hoping things will settle.
It’s great to get all the support on this group 🤗 many thanks & all the best in your progress.
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Targeted therapy- New drugs - any good for stomach cancer?
Date for Dad's op!!!
Post oesophagectomy (10 weeks ago) had dumping syndrome now experiencing chronic diarrhoea, for days on end.
NAUSEA
