Ivor Lewis post op

[Carisbrooke-24]

My husband is now 15 weeks post Ivor Lewis 2 weeks ago we had a an emergency his bowel had moved up into the diaphragm and had twisted causing acute pain and vomiting . Another operation was performed to rectify this has any body else had this problem. He is still losing weight now looks skeletal but eating well .I’m at my wits end on how to stop the weight loss we are now 2st 7 lbs lighter hospital seem not to worry . Keep advising high fat dairy which he actually can’t tolerate. Need to find a way to start gaining some weight .He eats well and snacking between meals Help !! This operation is so life changing and very stressful times .

[Mark4]

Clearly this is a stressful time for you but I wonder if your anxiety may be feeding the stress ? It’s really early days after a big operation it will take time and relaxation to settle things down particularly after the emergency operation - it takes a while even without complications and weight loss is normal .

Really good he is eating well and snacking too it will just take time

[kiddy]

Hi there,It is very early days still. Sorry to hear your husband had to have another operation. His body should settle at a weight soon but he may need supplements . Eating by the clock every couple of hours unhealthy snacks too. Make sure he doesn’t eat too bigger meals as it can have the effect of dumping.

I couldn’t eat high fat as in milk, yoguart, ice cream and some cheeses.

Cheddar was fine so cheese and biscuits was good as a snack. Sugar can also be a problem.

I take creon and take a vitamin with preobotics which helped me and my bowels.

Exercise as in walking good too to strengthen the body.

Try to relax

Best Wishes

Debbie

[liz_crisp]

Hi I'm now 11 years down the line but went from 12st to 7 stone. Now back up to 11st. It takes ages and I was skeletal. Don't worry about gaining weight. The gut is going through huge changes and you may well find that dairy becomes acceptable in time. I didn't eat meals as such just nibbled all day long anything I fancied, healthy or unhealthy it's calories and energy that matter right now. Everyone is different as to what they can tolerate but small portions and lots of them are better than meals. As Kiddy says Creon helps many. It's trial and error but sounds like he is doing well take care.

[rayw55]

Try Not to worry, I lost almost a third of my body weight at my lightest and have now got back to a steday 12st6. I was 15 before and went down.to just over 10. It's a long journey but I'm at 11 plus years now so my advice is for him to eat what he wants when.he wants and keep trying stuff I could handle chocolate at first but now eatvabout a kilo a week things will get better

[New-beginning]

Hi I am 10 years post op, however 4 years after op my bowel moved into my chest cavity through the diaphram due to wretching caused by a sliding hernia, causing me to feel sick , it happened after I managed to stop in a garage and knew I was dying , I managed to call an ambulance who arrived as I passed out my heart had stopped they managed to restart my heart but it stopped on the way to hospital , they didnt know what the problem was , after CT scan they discovered my bowel was in the chest cavity restricting lung and heart function, an emergency operation removing a third of my bowel bwing twisted theymanaged to save my life , as my family were informed it was unlikely I would survive , after an induced coma of 3 days and 2 operations I walked out of hospital 6 days later. This operation is major and disrupts your internal functions, you lose your sense of taste, you cant eat except small quantities , eventually appetite returns and weight will eventually gain, I lost 5 stone down to 11 stone and now weigh 13 , its a long journey , I can eat most anything now as taste buds return and appetite improves, I found Bovril educated my taste buds in the early stages post op. Hang in their life will get better.

[Quicksilver_1]

Hi there. Yes, I had the same thing happen to me about 12 weeks post ivor-Lewis. It was also an emergency too. Generally feeling sick, and with constant hiccups. I lost about three stone overall, so don't worry too much - I guess it depends how much you started off with. In my case I was probably 13 or so, and it has taken me five years to put back on about one of those! Initially I found that the lactose (ie sugar) in milk was a big problem, that and any other sugary foods will cause dumping. You can get Lactose free milk, and a dietician should be providing some high calorie drinks (though I didn't get on with those). It's going to take a while for his new plumbing to settle down. So you want low GI foods - eg some berries rather than whole fruits, porridge, etc. Anything that releases sugars slowly rather than too quick. His body will tolerate the sugars more over time and he'll learn what works for him. My favourite at the time were some nice buttery crumpets. Chew everything really well. Very gentle exercise will help and build up very slowly but make it regular. Weighing yourself every day can cause anxiety, as your weight can fluctuate over a single day, so don't get overly worried to begin with. It's a massive operation he's had, and it's going to take a while. Just keep putting one foot in front of the other, one day at a time. Best wishes.

[Carisbrooke-24]

Thank you both for that info oh boy it’s a tough journey . Interesting about the dairy side of food my husband seems so intolerant to high fat and the protein shots given by the hospital are a no no pain and feeling nauseous.One step forward good to know other people are on this pathway .

Weight is a real problem as only 12 st when we started and 5ft 10 so slim then now thin .!! Best wishes .

[Janashlin]

This is a major surgery and quite a few of us have had complications but still here to share our stories so that’s a plus!

I lost 66 pounds and was skin and bones. I ha e gained some back over the last year but not a lot.

My advice would be not to worry too much about the weight loss and try not to have that be the main focus. My partner stressed about it and kept offering food and to be honest it wore me out. Dairy bothered me as well but I can eat it now. The first 6-12 months were miserable but after that it got quite a bit better. I still have dumping syndrome everyday and eating is a chore but otherwise life is good.!

[champagnelover]

Hi Just like everyone is saying here it is still very early days for your husband - my op was 12years ago and I was 9 stones and lost 2 stones afterwards. Like you my husband was very anxious about my weight loss and was always trying to find foods I would eat. My surgeon told me I would eventually gain weight and be the weight I was in my 20s and he was right. I gradually put weight back on until I was 8 and a half stones! I was like that until these lockdowns and now for the first time I've actually put put on weight! It was all that comfort eating! Please be assured that he will gain weight and the little and often is definitely the key.

[Tigerbuddy]

I am so so happy and relieved to read all of this information, It is almost 2yrs.since my surgery and I went from a healthy plump woman to a skeletal wreck, still can't bear t o look in the mirror because I see an old old woman looking back at me.I want to eat everything but cant diarrhoea was a Nightmare but very slowly getting that under control, I hate my weighing scales because I'm eating but not putting on weight and that in itself is a worry but from what I'm reading here it seems to take a long time. So a huge thank you to all of you who took the time to tell of your journey and may you all have good health and happiness in the future.

[Janashlin in reply to Tigerbuddy]

That old woman in the mirror is a fighter, be proud of her!!

[Molly14]

Hi - I had emergency bowel surgery 3 months after Ivor lewis - it was tough going - I was only 48 when diagnosed and had never weighed over 8.5 stone - I really struggle to maintain my weight now and only just weigh 7 stone - I can’t look in the mirror - my diet is shocking and my eating is a complete military regime - however I’m nearly 6 years on and have learned to adapt and manage my side effects - I’m very active which doesn’t help the weight issue - it’s a different life and I still take it one day at a time - all the best

[AlanWare]

I have the same problem. My surgeon says, I need another op to pull it back down. Unfortunately my Health is such, The the anesthetist said I would not survive the op. So I have to hope that the bowel will not twist. Good luck.

[Trudivo]

Hang in there, Carisbrooke! My husband also had this happen, 4 years after his Ivor-Lewis operation. He’s two months out from that op, and healed well from it. Worst problem was soreness where they tacked the colon, and bloating, which went away. It seems he has had a procedure every year, between stretchings, a pylorctomy, and then the colon. It’s a rough road, for sure. Just like everybody has said, what he tolerates and what he doesn’t changes all the time. Early on, I made a bunch of different soups, put them in 1 cup containers and froze them, as it seemed this was the only thing he tolerated consistently. He also used protein drinks a lot, because sometimes a liquid diet is all he wants. Sometimes he interprets “liquid diet” as being frozen mudslides, but at least he’s getting some milk😊. I know how hard it is being the caregiver.... a lot of times I just feel useless, because no matter if he is eating what is recommended, he still gets the dumping syndrome.... unfortunately, it’s just something you get used to. My husband was 255 before his op, and down to 150 at his lowest. Now he maintains pretty well at 175-180, which is probably the weight he should be.

[amsy]

Yes it is very stressful! I went through exactly the same thing 12 weeks after the Ivor Lewis op - my colon had got trapped in my chest. The surgeon who repaired it mentioned he had to tighten the diaphragm to stop it happening again. Since then, the weight fell off and I got quite ill and very weak. Eating was so uncomfortable (still is), but I had a jejunal feeding tube put in and things have improved. Best wishes to both of you - it is quite a journey! Xxx

[Fizzy35]

The dietician can prescribe a health supplement drink to take 1 2 /3 times a day along with food

Most prescribe a milky type one but there is actually a fruity flavoured one available to those who can’t take dairy

Maybe try phoning them to discuss?

They can be tryout best friend when struggling with food issues

Also try having little bowl of sweets/ nuts/ crisps/ nibbles beside him all the time. It’s all calories.

And if he can tolerate soya try adapting some of your recipes accordingly?

Best wishes it’s a difficult juggling act whilst you find out what works for him.

But you will adapt !

[Fizzy35 in reply to Fizzy35]

Sorry should have read

They can be your best friend when struggling with food issues

Oops !

[grandylynda]

Yes, zI had my emergency just over 2 years after IL. Most of my intestines were in my chest. They said I could have died. Lost a lot more weight after that op and 18 months on still a bit below the weight I was before. I can tolerate some dairy but not much. The initial advice I had was to concentrate on protein and cards.

[Notknowmuch in reply to grandylynda]

Clif Bars are a great snack to have too.

[girlbrickie]

Hello..I had this same surgery in nov 2005...I had most of eosophagus removed and part of my stomach which was pushed up to area beside my right lung and shoulder.I had rooftop incision ie from bellybutton and down to each hip..and under right breast round the bra line to the back and up to my shoulder. The scars are huge and wide and deep..even yet..they have never really got to,look any better.

The pain from eating even a spoonful too much of a sweet food..like meringue caused what is called du ping syndrome and the pain and sweats were horrific and so I learned to avoid high sugar foods and high fat foods are a no no nut you can ask doctor for creon capsules which help because once the stomach has been removed or reduced it’s impossible to break down fats and creon helps brilliantly.

I found that eating just about six spoons of food four times a day was plenty and I’d have an ice cream like a magnum for a special treat but remember to take cream to help break down the fats.

Get in touch with OPA. And find out if they have a support group near you or if you can talk to,a survivor on the phone. I’m in Scotland in Ayrshire but was in Glasgow when I had my surgery done by Mr Grant Fullerton. If I can help please call me.. Wilma. 07907959728.

[girlbrickie]

Hello..I had this same surgery in nov 2005...I had most of eosophagus removed and part of my stomach which was pushed up to area beside my right lung and shoulder.I had rooftop incision ie from bellybutton and down to each hip..and under right breast round the bra line to the back and up to my shoulder. The scars are huge and wide and deep..even yet..they have never really got to,look any better.

The pain from eating even a spoonful too much of a sweet food..like meringue caused what is called du ping syndrome and the pain and sweats were horrific and so I learned to avoid high sugar foods and high fat foods are a no no nut you can ask doctor for creon capsules which help because once the stomach has been removed or reduced it’s impossible to break down fats and creon helps brilliantly.

I found that eating just about six spoons of food four times a day was plenty and I’d have an ice cream like a magnum for a special treat but remember to take cream to help break down the fats.

Get in touch with OPA. And find out if they have a support group near you or if you can talk to,a survivor on the phone. I’m in Scotland in Ayrshire but was in Glasgow when I had my surgery done by Mr Grant Fullerton. If I can help please call me.. Wilma. 07907959728.

[Carisbrooke-24 in reply to girlbrickie]

Thank you so much for your info oh my you have been through the mill . We are finding dairy becoming a real problem so I am now on a reduced dairy diet for him . Protein Shots have caused more problems than help pain in the stomach and nausea so have binned them. We will hopefully get there just didn’t see this set back coming . All the very best to you .Chris

[Carisbrooke-24]

Good Morning , thought I would do an update on my husband we are now almost 5 months post op from having the Ivor Lewis procedure.Things have been difficult but at last weight is slowly going on .

Our Upper GI nurse has now suggested he takes Creon enzyme as this apparently helps the body absorb fat .

Does anybody know if this works any info greatly received.

Now he’s eating well and no pain .

[Janashlin in reply to Carisbrooke-24]

Glad to hear things are going well, it’s a tough recovery.

I tried the Creon but made no difference for me however we all seem to react completely different to things.

[Carisbrooke-24 in reply to Janashlin]

Thank you for taking the time to reply .