Yippee! So, glad to hear his surgery went well and he's back home :-)

They actually had me eating real food before I left the hospital and I was in the hospital for 8 days. I think some surgeries are done a little differently and different Drs. have different ideas. I heard of one woman on here that said they had her not eat any real food until a month afterwards. That was a surprise to me, but there was a reason - I just don't recall what it was. If she still comes on the board and reads posts, maybe she'll remind me :-)

At any rate, I'd do what the Drs. say and I know when I started eating, my gastro told me to be sure and take slow, small bites at first. I didn't eat a large volume at the time - just enough to test the waters...so to speak :-) I got more and more confident and learned my new way of eating....how much....what....etc. :-)

I'm so happy his surgery is behind him - YEH :-) Brenda

Thanks Brenda for the info, wow they had you eating before you came home thats great, my husband is jealous! yes they told him after his appt next week if all looks good he will be graduated to clear liquids, broth, jello, juices, etc. for a week & then the following week to a thicker diet like cream soups, shakes, etc. & then on to a regular but very small diet & continued tube feedings at night so I guess it will be a month from the actual surgery before he gets a to eat real food, now he had a very minamally invasive surgery only 3 small incisions 2 on the abdomen & the largest one by his collar bone so maybe that has something to do with it, how was your surgery done? did they remove your whole esophagus or just part of it? my husband had the whole thing removed, just curious to know how other peoples surgery was done, it's so amazing the things they can do now through only small incisions.

Wonderful news. so glad everything went well. It may have been me that brenda was talking about. It was exactly 6 weeks that i had nothing to eat or drink by mouth.

I had a leak at my neck where the small bit of esophagous was attatched. I had a couple leak tests and they found a small leak so i couldnt even sip water until my 6 weeks after surgery leak test.

i really got used to no food or water after awhile. but as soon as the test came back ok. i took my first drink of cool water and it was soooo good...

.This is when i lost all my weight. the feeding tube was used for 12 hours at night. It has been almost 15 months since surgery and i have gained back 7 pounds. i now need to watch it because i could keep gaining and i feel since i was over weight at the time that i am at an ideal weight now.

Good luck. and we are all here for you!! cindy

My doc is the head of thoracic surgery at Mayo. Unlike most other surgeons treating EC, he ordered absolutely NO food or even water by mouth for a minimum of one month. Thought the thirst was awful. He kept the feeding tube in and, due to hospital malfeasance in my home town hospital (plus 6 weeks in a nursing home rehab), I wasn't introduced to real food for about 2.5 months. Had I been able to stay in Rochester's hospital following surgery, my recover would've been done in half the time.

It sounds like your husband had the laprascopic surgery? I didn't hear about that until after my surgery was done :-) But a gentleman I met on here had it - about the same time I had my surgery - and he is doing well with just some adjustments with eating, I believe. I know he's enjoying life with his family :-)

If you haven't read my journal yet, I think I go into a little more detail about my journey, but I was cut down the front left side of my neck - about 6-8 inches (I believe) and a rainbow (or shark bite look of the upper jaw) cut on my upper stomach - pretty much all along the top portion of it.

They did remove most of my esophagus (I think about 85%) and removed about 15% of my stomach. That's approximate.

They insisted I keep my feeding tube in - 1 month past surgery date, but I was soooo ready and really pushed for the surgeon to remove it at that time. He did it right in his office :-) They really don't want to remove it until they decide if you need follow-up chemo (that's my opinion of my Drs. anyway). And, maybe to make sure that you are going to be able to eat enough without problems. I never used my feeding tube, once I left the hospital. But, I tried to make sure I was getting in enough calories to not lose even more weight - but I never ate a large amount. Small amounts every 2-3 hours :-)

Thanks, DancingGrandma for posting :-) I thought it was a month from my memory of following you along your journey on your Caring Bridge site, but I see it was actually 2.5 months - wow! Well, I am so proud you hung in there during some very tough times and came out tougher than it!!

I remember just once telling one of my sisters - I always thought I was a really tough person (when it came to fighting a health problem), but I think this may be tougher than me. But, nope - I was wrong - I was tougher in the end :-)

Always, I hope your husband adjusts well to food again, when they say it's ok. I definitely was graduated starting with clear liquids, etc. But when it went well for me - the next day they tried the next step (full liquids?), etc. You know for days in the beginning you can't have anything. From memory that thing was stuck in my nose or something, yes? I tell you, I don't mind one bit forgetting some of the stuff :-) But I'm happy to recall it to help anyone else.

Cindy, I wondered when they did the leak test on me, if it leaked what they would do. I was afraid they might have to go back in and sew it up again. Sounds like they just give it more time to heal, which is good, but that had to be scary when that happened. I'm so glad that your recovery has gone very well too :-)

I pray we continue to do well - all of us :-) Brenda

Glad to hear that he got through everything in great shape. It is interesting to hear about the scope thing. I had a groin hernia dealt with that way, but my esophagus was removed the old fashioned way. Scar from the jaw downward to the shoulder following the collar line. Another huge scar from the belly button up to the ribs, with series of cross scars over that one.

This was maybe larger than normal since I had another old hernia (not fixed at the time) in the same area. The surgeon said he fixed that too, for a two for one special.

I tell people at the beach I had starred in the movie Aliens. When I climb into a hot tub, some of the crowd vacates, so it does have uses. My wife says I need to wear a shirt in such places, but I don't care.

Thanks to all for your responses, I do have a few questions though, what is this leak test that a few of you have mentioned? he's already eating ice chips & small sips of water & everything seems to be o.k. how do they do the test? also the fatigue he's experiencing since he came home has been extreme, he's exhausted just walking from room to room is that normal? & last question most of the pain he's having has been in his throat near the incision area & near his feeding tube did any of you experience any of these issues? all of you always offer helpful info & it's so much appreciated because it makes us feel like were not alone through this process. Thanks again

The leak test was done on me in the hospital. I think I was still in ICU (probably on my 5th day), as I was in there for 5 days - that was standard for the hospital where I had mine done here in Ohio. They had me lean back against a table that they raised from horizontal to vertical, so I could just stand against it. Otherwise, I guess they would have had me get on the table, so I was glad the table could come up to me :-) Had me drink something (and as it went down) the machine they used was showing if I had a leak. In other words when they attached the two parts, was there a gap(s) anywhere. At least that was my understanding. They needed to know this before they had me start to eat, maybe even drink? It's been over 2 years, so I'm sorry my memory doesn't hold onto every detail, but I'm sure at that time my focus let me get back in bed and is there a leak. :-) Luckily for me there was not. So maybe your husband already had it? I think (from memory) it seemed like nothing more than maybe like an xray?

I was very fatigued, so I was more than happy to just walk to eat and back to my chair with my head rested back. Just sitting up to eat at first was tiring for me. Especially right after eating I was extremely weak. It was almost as if my new-found esophagus(stomach) had to learn of the adjustment. But, I do want to say day after day, my strength came back little by little, but it came back :-)

I had surgical pain, which I expected. My feeding tube usually gave me pain around where the tube went in, because it's easy for that area (external) to get moist. You want to keep it as clean and dry as possible. I'm assuming they have you put a dressing around it after cleaning and drying the area? I did use something like desitin around the area where my feeding tube went in to help keep it dry. There was something called "butt" something that a new mother told me works better than desitin, I used it instead, but the name escapes me :-)

I had the leak test like Brenda described, i stood up and leaned against a table. they gave me something yucky to swallow and the watched it go down on a screen. if they moved the table in different directions they could watch it go down. on my second time i had the test it was ok. It was like a x ray that they watched as it was swallowed. it wasnt fun to do considering i was in pain at the time. i also took a long time to get any energy back after i got home. just walking to the bathroom was a chore and i was out of breath.

there can be pain at the feeding tube sight. to me it was very irritating. just watch it and make sure it doesnt get red or hot since this could be infection and you would need it looked at. Take care..

The weakness sounds very normal after the operation. It was 2 months before I could ride a bike 3 blocks, or walk the dogs. Now, 11 months later I do walk about 6 km a day, but I am not normal yet. Weak for 2 hours after eating, and I can not go 5 hours without eating, or I will collapse. Food is fustratingly good, but I can not eat enough with getting all dumpy (the dumps).

So in short, weakness as you describe so soon afterward is normal.

Thanks ladies for the info on the leak test, the only thing I remember them doing is around the 3rd day after surgery they said they were taking him for a chest xray but he didn't mention anything about having to drink anything & he was back to the room in about 15 mins so I doubt thats what they did. I know next week when he goes for his 2 week follow up appt the Dr. is doing a scope to see how everything looks,did anyone else have that done after the surgery? It's so strange to me how every Dr. seems to have there own way of treating this type of cancer & the surgery.

My specialist mentioned that he was surprised that the surgeon didn't do scope afterward, so I gather it is done but is dependant on the surgion's whim.

About 1 1/2 months after the surgery my surgeon went back in to dialate the esophagus. He had advised me that this might be necessary. The esophagus had constricted as the surgery healed. My next endoscopy wasn't until about 8 months after the surgery. I had my chemo and radiation after the surgery (most on this site had it before). The endoscopy was a few weeks after I completed all the treatments. They took a biopsy (which was negative for cancer) and again dialated my esophagus. That was in September. I have not had another endoscopy, but I did have my second Pet/CT scan since the surgery (also clear).