10 months after surgery

I am new to site and am looking for answers the doctors don't seem to be able to help with.

My husband had complete Esophagectomy in Oct 07, and although he has no more signs of cancer and does not require chemo/radiation, he is having one heck of a time recovering from the surgery itself. He has been in and out of the hospital since his original release. Every time something new: can't eat, infection, diarrhea, vomiting, etc.

They (doctor's) can't tell us if this is normal, or if it is dangerous... I'm at my wits end and he is losing hope.

Is there anyone out there that can tell us something about similar experience? If this has happened to you and we just need to give it more time, it would be helpful to hear.

He has lost over 50 pounds since surgery and cannot put any back on. It has rendered him helpless in a chair and needing assistance just to walk to bathroom.

Thanks for listening...

Hopeful&tired,

I had the esophagectomy (Ivor-Lewis) surgery 3 years ago, but didn't have this kind of trouble. But, lots of people on this site have had the same trouble for a while after surgery. I'm sure you will get lots of suggestions. My suggestion, and it may sound a little crazy, is to have your husband move all he can. Walk several times a day until he is tired. That gets the blood moving, gets him breathing deeper, and stimulates the appetite.

Good Luck and KEEP MOVING,

Steve 

Too bad that your doctors cannot offer any help.  The vomiting and diarreah are pretty normal.  I don't know about the infections.  My first 8-9 months were pretty difficult because I was a slow healer and had lactose intolerance and didn't tolerate sweets well either.  I kept trying to eat things like custard and rice pudding and all the supplements to help put on weight not knowing that that was what was causing the problem "for me".  One of my doctors recommended that I just stick to rich soups like chicken noodle.  My surgeon told me to try chili.  I did well on the soups at first with saltine crackers and then graduated to spaghetti & meatballs.

I did have a lot of minor infections like sore throats and chest colds, but my family doctor was very familiar with my situation and put me on antibiotics immediately every time I got a sniffle.  He told me not to wait.  I did use the acidophilis regularly.  He was the one who told me to leave milk products alone.  I was able to add milk products back into my diet about 2 years after my surgery and used Lactaid to begin eating a very small piece of cheese.  Little by little my system adjusted.  I still have some problems with ice cream because it is so rich.

It sounds like he could be getting depressed.  See if your doctor will prescribe a mood elevator until he can get his digestive system functioning well again.  Keep checking the board, there are many great responses from people who have been there.

Hi!

I had my esophagectomy 19 months ago, at 10 months post-op I had very much struggle every day. I too was a slow healer. Does your husband have a jejunostomy feeding tube? Sounds like he might need some support with his calories. I had to keep my tube for 9 months after surgery. I lost weight after removing it and had to go to the hospital a couple of times to get calories directly in the blood stream. I still struggle a lot to keep my weight up, since dumping problems are quite an issue. I too react to milk products now, but I just can't leave it alone... I love milk! I'm trying to put it out of my diet...

I just recently discovered that soft, well ripened pears do good! My digestive system doesn't get upset at all when I eat pears. Hard to live on pears alone, though...

About vomiting... I still throw up a little every other day, mainly in the mornings, after breakfast. I'm trying all the time to change this by diet, but it's hard to find the exact right diet. It's different for each person, you have to try different things.

Diarreas... Yes, had that too, and still have, but much less frequent now! At 10 months post-op it was probably 3-4 days/week, now about 1 time/week.

Also it's hard to get any appetite when dealing with dumping symptoms, but you have to try different foods anyway. In most cases, I believe things will stabilize, and the body will adjust, even if it takes years. Some symptoms might remain, though. Anyhow I believe it's important to get some help with the calories, so he doesn't get too weak. If you're too weak it's even harder to eat.

Wish you the best!

Thanks to all the replies. You guys are great. Just got out of hospital again and this time they put in a feeding tube through the nose to supplement calories. I appreciate all the suggestions and will continue to sample different diet plans. I will continue to pray for all of you out there sharing this journey.