Struggling a little to make the best of what we have.

[lynnbibb]

Hi All,

As you know Dave had IL surgery in January, with a 5 week hospital stay and complications including his new plumbing going on strike for 5 weeks.

He is back at work full time and pyhsically done as well if not better than we hoped, although still tires.

Our problems are with eating and bile reflux .

Dave has the obvious lack of space so can't pack much in, which to be honest we were prepared for and could cope with IF this was the only problem. However he has other issues.

No feelings of hunger OR fullness which results in not wanting to eat and being ill if he eats even a teaspoon too much.

Having to constantly go back to the hospital for gullet stretches which are really unpleasant and only seem to make small temporary differences. The nurse did indicate he may have to have these every 4/6 weeks for life last time he went in.

Food sticking due to stricture.

Nerve damage to his mouth making EVERTHING including tea and saliva taste of salt, which isn't helping with the lack of interest in food.

Dave is only a small, guy and has lost a fair amount of weight. He is also having problems maintaining his weight.

We REALLY want to move forward and are desperately trying, but there seems no direct way without one or another symptom getting in the way. he is not a man prone to depression or low mood, but is begginning to struggle. Any constructive ideas would be really helpful.

Many thanks, Lynn x

[ccfc]

Hi, I am four and a half years post surgery and I went back to work for 16 months but found it too tiring so I retired on medical grounds two years ago. I still never feel hungry or full and was told that will always be the case. It's a matter of judging the size of meal you can eat and that comes over time. Over the first 18 months I had to have several stretches but none since then. I think it takes time for the scar tissue to settle down. It's still early days for him so even though he may feel down at times there is still a fair way to go on the rollercoaster. Hope this has been a help in a small way. Best wishes, James.

[lynnbibb in reply to ccfc]

Many thanks for your reply ccfc, and the encouragement , I think maybe we are expecting too much too soon!!

[ELI55]

Hi Lynn,

My husband has just passed the 3 year mark since his op. Your husband is doing incredibly well if he is back at work full time after such a short time, as recovery is long and challenging after this surgery.

I remember despairing at mealtimes - I don't know who dreaded it more, me or hubby! He had a stent fitted owing to a leak and we had the impression that he would be fairly restricted in his diet. Well, I'm glad to say that after a truly miserable 6 months when he first came home (after 2 months in hospital, 6 weeks with feeding tube only) he gradually made progress and eats just about everything. As I read all the time on this site, it's all about trial and error both in quantity and type of food. Definitely little and often, anything that he finds he can manage - every mouthful counts even if it seems a tiny quantity. My husband still never has an appetite as such, but once he gets eating he is o.k. and we do now eat out . He had one stretch about 3 months after he came home, and so far hasn't needed another. He still suffers if he overeats (being sick with a stent is no picnic), although he is now able to eat reasonable portions.

I was in touch quite regularly with the hospital dietician who reassured me that things would settle - I assume/hope you have access to one? I have also read somewhere (I think something the hospital gave us) that a small sherry can stimulate the appetite - I can't say we have tried this, although I resorted to a few more gin and tonics myself during the worst of it! I also remember that when a friend was having chemo (and her taste buds went haywire) she found sucking on pineapple cubes cleared her mouth a bit.

My husband also suffered some depression - he was convinced that it had been pointless having the op and that he would never enjoy a quality of life again as initially he was so poorly. If it becomes a real issue please consider getting some medical help as living with a depressed person is very wearing however much you love them. He did come through this fortunately.

I'm sorry I can't offer much practical advice, but I do know that things can improve, even if it doesn't seem that way just now.

This site was my salvation, as I knew nothing about dumping, blood sugar and all the rest of it from the hospital. I wish you both the best and will keep an eye out for some better news from you - take care of yourself too.

best wishes, Elaine

[lynnbibb in reply to ELI55]

Thankyou so much for your reply Elaine, and I'm so pleased your husband has gone 3 years, that's wonderful!!

We seem to have had very little support from anyone TBH, but manage mostly.

Dave was similar, in hospital for 5 weeks, and purely jej fed for that time with an NG tube to drain bile as he couldn't even process that. he also had double pneumonia and a rare sepsis, he had nightly jej feeds for 4 months, but insisted he could manage without the tubes, and I guess has done well really.

Like most carers, I think I find it difficult knowing what to do for meals as no 2 days are the same. so can't form a pattern at this stage, I also find it distressing to see the one person I most care about struggling so much., but the sherry sounds like a brill idea, and not particularly for Dave!!!

Thankyou for your reply and hopefully there will be better news on the way in the coming months x

[ccfc]

I tried the sherry before meals. Not sure if it worked or not but I soldiered on with it anyway. Doctors orders and all that. James.

[kiddy]

Hi he has done so well getting back to work full time. You have to eat by the clock at least 6 small portions a day, the hunger has gone but doesn't' he feel weak if he hasn't' eaten? I had mine 15mths ago. My portion sizes have increased but still only child size meals with things like cracker and cheese, fruit in between. I don't eat big portions of veg but try to inc protein at each meal time. I too suffer if i eat too much and i get dumping syndrome for too much fat or sugar inc milk yoguart and ice cream.

My taste buds took along time to come back especially after having post op chemo. I also had problems and anxiety over eating things which reminded me of sticking eg bread, chicken.

It is still early days for him.

Good Luck

Debbie

[lynnbibb in reply to kiddy]

Thankyou Debbie,

You sound like you've done really well too.

He's never mentioned feeling weak, but like most, still gets fatigued easily. I think anxiousness at meal times is natural after everything you've been through, and I know Dave does too, but his gullet is also building up scar tissue, and he has to go in every 4/6 weeks to have it re stretched which he hates. he's had 3 already with a 4th due next friday.

Thankyou for explaining about the taste buds, we are keeping our fingers crossed that taste will return if only a little eventually.

Good luck x

[pegcburke in reply to kiddy]

Debbie--You are the first person on this site, or another one I read, that has said you can't eat fatty foods in addition to not being able to eat sugary foods. Most of us that are post-surgery get dumping syndrome from food with too much sugar, but it is very frustrating to not be able to eat food that is too fatty. I've found that between the two restrictions it is very difficult to find foods I CAN eat, and I've lost so much weight--about 60 lbs., and have shrunk from a hefty size 14 down to size 4. If you have any suggestions, I'm definitely open to them! It's difficult getting enough calories in each day to maintain my weight, much less gain back some of it, which I would like to do. Heavy sigh...

[lynnbibb in reply to pegcburke]

We are vegetarian, and Dave struggles getting calories in. he was only 11 stone to start and has lost weight since surgery. We avoid as much fat as we can but drink whole lactose free milk including making milky pudding (ie rice pudding), so quite calorific.

I also bake cake with wholwheat flour and butter, but minimum amount, and make healthy breakfast bars with baked oats, peanut butter and maple syrup. High in calories, but quite low in fat.

Good luck pegcburke x

[kiddy in reply to pegcburke]

Hi i would talk with your hospital dietician. Trial and error i can eat some cheese so include that each day. I have crisps, nuts not healthy but keep weight steady. Fatty meat for me is a no no i keep to lean cuts and cut up small avoiding eating late. Some people drink almond milk which is plant based and can be used for cereal, custard etc. Dr said you shouldn't avoid everything but try again at a later time. Also coconut oil can replace butter in some recipes and using an alternative sweetner to sugar may help. Try to avoid drinking with a snack or meal by at least 30mins.

Good Luck