A month ago I wrote regarding mucus that was delaying my husband's recovery. Thank you all for the help and support.

He is now 14 weeks post tx. The mucus and feeling of rubber bands across his throat has subsided, but has not resolved. At least it is not causing a choking/gaging feeling all day long. Mainly it is a problem upon arising and in PM after using dental trays.

Increasing his diet has been very, very slow. I'm wondering how this went for others. He has a PEG - 5 cans 2 Cal/day. No weight loss. We are substituting smoothies for feedings as tolerated. He can swallow solid/soft food but has all the other issues - lack of taste, no appetite, no saliva, etc. We are checking into nutritional & alternative medicine consult.

Does appetite ever return while still receiving tube feedings? The problem is not a lack of food ideas. He wants to eat and is optimistic each time he tries something but doesn't enjoy eating. Each time there is an issue - doesn't taste good, too difficult to chew, too dry, sticks to teeth, etc. Any suggestions?

On the positive side, his stamina is increasing and personality is coming back (it was lost for a several months). I'm glad that others here can understand these issues but am sad that so many have to suffer with this. Lottie

Lottie,

It took a long while for my appetite to return. At first, I'd get full, or worse, nauseous after just a couple of bites and the lack of taste was so discouraging. I still can't taste a lot of stuff, and some foods just taste like dust, so what I concentrate on, more than anything is texture. If something has good texture, I can tolerate it even if it doesn't taste right.

Foods that have really worked for me have been eggs poached in water over hash browns, soups with pasta and soft vegetables including Asian noodle soups, baked or poached fish, and strangely, slightly soggy cold cereal. And always, always sauce, gravy, ketchup or whatever... it has to, has to be wet.

I've decided that food and eating is, for now, like exercise. Its not especially enjoyable, but at the end of the day, its what's best for me. And I know that it will get better. It just has to!

Me too...I finished tx on 11-4-08 and eating is hard, everything your husband feels is the same for me. I drink VHC, Juven, Ensure and Boost drinks to break up the monotony. Sweets came back so I can enjoy hot tea with honey, I'll have soups but I'm not eating a lot of solids. It's tough but every new week is better then the last. It's the way it is...recovery is very slow. I'm not worried about eating I figure that will come in time. I go for the nutrition and calories.

Lottie - my husband had no appetite either and was getting all of his calories via the PEG. We asked the doctor about an appetite stimulant, and he said no, just use the PEG tube less - that will stimulate the appetite. He was right. The only way your husband will feel hungry again is if he IS hungry! As soon as Tim started to not use the PEG (just cutting out two cans per day at first), he noticed his appetite coming back. He seems to be one of the luckier ones in that he's been able to eat pizza (not the crust ends though!) - it was the first real thing he ate!

What Margaret wrote is true - your husband just needs to look at eating as something he HAS to do, not necessarily something he's going to enjoy for awhile. And from what you've written about his "issues" - pain while eating doesn't seem to be one of them, which is a good thing!

Tim really wanted to get rid of the PEG, so that was the motivation he needed to make himself eat and not rely on the PEG. It was definitely frustrating and more than one meal ended in tears (both of us). But after he hadn't used the PEG for a week, the doctor said it could come out, which it did last Tuesday.

Your husband will get there too!

I didn't have the Peg but the eating part post Tx is both physical and mental. It will just take lots of time but slowly and surely things will improve and I hope, like me, he will once again enjoy eating everything just like before. Understand I was not satisfied until about 16 months post Tx so tell him to hang in there.

Interesting Time...yup and lots of it.. when I go out to eat or even at home here (home doesn't matter as much) it takes me a long time to eat sometimes gotta reheat the food a couple of times before I am done. Yummy...but eating out everyone seems to be waiting for me...They all still smoke so I just tell them to go out and have a few they come back and well I would just be finishing up...Can't accuse me of not enjoying...Oh yeah last night I learned rice is not a good food post free flap surgery. If I could donate some of my extra pounds to you folks I would gladly do it. I believe in sharing...

At almost three years out from nuking, I still have the 'problem' of something like mint ice cream (Tillamook came out with Tilla-Mint!) will taste great at first but my taster changes after a few bites and then I don't taste it. Gotten worse, of course, when they removed a lot of taste buds with the front part of my tongue.

If your hubby is holding his own with the eight then he is doing something right..Dianne I bet you use the nuker as much as I do for keeping even oatmeal or cream of wheat hot. LOLFor 1/2 of a sandwich with just a tad of peanut butter, plenty of butter and some jelly, it took me 20 minutes to eat all of it. Now I keep a big glass of milk beside me and wash food down when I have that problem.

Thank you so much for your help everyone.

The day after I posted my message, my husband started trying more foods. Not sure what happened... but he became less tense about attempting to eat. To our surprise cold cereal went relatively well. There is definitley a mental component and that is also true for the caregiver/cook.

WendyinPgh - I will ask MDs about cutting back on tube feedings. However, he is not hungry in AM either. I read an old post that said some patients are never hungry until PEG is actually removed.

GI office uses guideline of 1 month maintaining weight, without tube feedings, before removing PEG.

David - I told him about your 16 month time frame and he appreciates being prepared for that possibility.

Lately things in general seem a little more normal, as side effects are starting to decrease. Lottie

Man the recovery is tough, maybe tougher than the Tx because we never know when it's going to be over and since each of us can recover differently it's hard to predict what his might be so just tell him to expect a long recovery and lets hope he's pleasantly surprised.