3 months post op

[lynnbibb]

Hi all,

As you know, m OH had Ivor Lewis in January and suffered a mass of complications (double pneumonia, sepsis, and his stomach stopped working completely for 5 weeks so even bile had to be drained).

Pyhsically he is brilliant and would LOVE to phase back in to work, but is still having massive problems with food.

He has had scar tissue which is preventing him from eating without vomiting, or the use of sips of fizzy pop to dislodge the food throughout a meal. He has had one stretch, and is due for another in 2 weeks. He also still has his Jej in which bothers him.

Please could other people tell us what they eat as we are struggling terribly with his diet. We have always tried to be healthy and eaten vegetarian stir fry's, curries, homemade soups etc. As he can no longer eat rice, bread. crisp veg, jacket potato etc we are struggling to keep his calories up without the heavy use of biscuits and unhealthy foods.

Sorry to sound like we are whinging, we are just keen to try and progress forward. many thanks xx

[Magpuss]

This may be totally irrelevant but my problems with vomitting didn't stop until the jej was removed. It wasn't due to be removed, and it wasn't thought to be causing any problems but when two of the stitches that held the plastic 'tube holder' in place came out they were replaced, and somehow or other the doc managed to stitch through the tube itself as well as me and the plastic 'fitting'. He'd had to give me four injections of local anaesthetic instead of just the one because he couldn't get the needle in. He didn't know he'd made a mistake and I was so sore that I didn't attempt to use the jej that day or the following day. I knew that something wasn't right as soon as I next tried to use it though so I phoned the hospital and they saw me the same day, when it was decided to remove it. The vomitting had stopped from the day I stopped using the jej so my consultant thought it would be safe to try me without it, he never regarded it as the cause of my problem, but I did. Maybe your husband could speak to his doc about not using his jej for a day or two, just to see if he notices any difference - I do hope so, I remember how miserable I felt about constantly being sick. Good luck to you both.

[lynnbibb in reply to Magpuss]

Thanks for you reply Magpuss, and so glad it sorted in the end.

I know Dave feels nauseus a lot and di wonder if the Jej was responsible.

Sadly the sickness is caused by food obstructing in the oesophagus due to scar tissue. He chews and swallows well, but most things stick, and if they don't stick they are slow to move down. Each small meal can take up to an hour to eat, and he is starting to get really down about it. Meal times really do worry him although he still keeps trying!!

[worthbanner]

The problem I found early on after the operation was simply eating too much and occasionally too late in the day (after 7pm). I would cough and be unable to stop it before retching. Oatmeal is my staple for breakfast every morning for months now and without it I have had intermittent problems the following day--not vomiting but gas. Also chewing gum most of the day but particularly right after meals has greatly bettered any reflux problems. It's a matter of experimenting and will get better as time goes by both from increased knowledge on the patient's part of his tolerances and, of course, the healing process. Best of luck.

Worth

[kiddy]

Hi i used to still get food stuck in first three months i was told to up my ppl from 1 to 2 and take gaviscon at night. I had a lot of soups ,mash potato tinned meat like chicken in sauce, mince from m and s. fish pie. I couldn't tolerate milk products but other people would have rice pudding, yoguart and add fortified milk to them. Have you spoken to the dietician at the hospital? It does get better. I think the healing process has a lot to do with it and being anxious . I had my jej up to 6mths after although I wasn't using it. It was relief to get it out.

Good luck

Debbie

[lynnbibb]

Thankyou Debbie.

We see the consultant on Monday , and I think Dave is hoping the Jej will be taken out then. he has another stretch booked for the 20th, so are really hoping that will help as I think the physcological effects from the symptoms are something we hadn't even considered affecting him as he's not prone to depression usually.

Onwards and upwards!!

[haward]

At this point in time don't worry about unhealthy food. Eat what you can. Butter, double cream, cremefraiche, nice fatty soft cheese will all help. Mix them into everything you can. Once the after effects of the operation recede worry about what's right. Now; worry about what's possible. Chocolate cheers you up and keeps weight up; and it's lovely.

And you're not whinging! The after effects are awful. We all know how hard the first few months are. Stay in touch

Haward

[Temprell]

Hi, had similar problem at first, had oesophagus and pyloric valve stretched, ate things like mashed potatoes and gravy ,everything i ate had to be washed down with fizzy pop, a good way of getting calories is to drink protein shakes like athletes have, it does get better , best wishes michael.

[lynnbibb]

Thankyou SO much for all your replies ~ it does help!! We knew the after effects would be life changing, but knowing it and living with them are different things!!!

Dave sees the consultant for the first time since he had surgery tomorrow, so fingers crossing that the Jej will come out. Each step is a step nearer settling into a new pattern.

Lynn xxx

[tallbear]

Hi there,

Only just saw your post as I am on a weekly update.

I eat healthy and am also a veggie. Quorn well cut up up is my saviour.

A lot of the things other people have mentioned I can't tolerate so what I do is

have soup and mix mashed potatoe into the soup and cut up quorn sausages or quorn steaks into really small pieces and add that to the soup.

It goes down easily and if you make it in a batch you can just have half a cupful every half an hour or so. I've also lost a lot of weight but this manages to keep it at a new constant and at least I am not losing anymore.

I am eighteen months post op.

Good luck with it all

Richard