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maria53
Posts: 10
Joined: Jan 2010

My husband was diagnosed with EC in late Nov and thankfully was able to have his surgery on Dec 17th. Our daughter works for an Onc and was very quickly processed through the stageing tests and appts for surgeon. He was in surgery for 12 hours due to the need for certainty that lung nodules found were not malignant. So aside from the espophagectomy, gastrectomy and pull up procedure he also had a thoracotomy and rection of lung. He is home now after 14 days in the hospital at Christ in OL Illinios. If anyone needs a Doc in the area his was Paul Gordon and I cant say enough about his care by both the doctor and the nurses in the SVTU (surgical vascular thoracic ICU) at Christ. I am a RN and have been in practice for over 35 years so I have a little advantage over non medical people who are stunned with this diagnosis, but believe me I depended on my many friends who told me to stay off the net for information till this point so I could take this one step at a time and deal with the steps we needed to take. Chuck was discharged from the hospital on Weds and we are in the process of setting up a home program. The biggest challenge will be getting enough oral intake to minimize the need for tube feedings.He is a big guy and target calories for him is 2700 a day. Chemo to start in about 2 weeks and again I will heed my good advice and wait for the teaching session with the Onc till next week to think about the Chemo and make plans. For now if anyone has advice on dealing with diarrhea from the feeding it would be appreciated.Hi is a Jtube. Also if anyone has advice about affordable tube feeding apparatus again it would help. Healthy New Year to all of you and keep up your strengh. Maria

weezie47
Posts: 22
Joined: Dec 2009

Maria,
Welcome to the site. My husband was diagnosed on Dec. 4, 09. We are still testing to see what options are available. I have training as an LPN, but not currently working. My husband has also had 2 kidney transplants. Sometimes I think it is harder, because we do have some knowledge. Your advice about staying off the web is great. I started to investigate and it made things worse. This is the best sight I have found for info because someone has been through whatever the problem is. Goodluck and keep the faith. I will keep your husband in my prayers!

maria53
Posts: 10
Joined: Jan 2010

I know what you mean about knowing maybe a little too much being a health care worker, but I still think that once the dust settles we are in a better position to help our sick family member. The only problem is also taking care of yourself which is very hard to do at this time. Thanks for the prayers. They can work miracles. Maria

Hope_Faith
Posts: 164
Joined: Aug 2009

Welcome to this site. You will find many friends here. My hubby had surgery on the 16th so our hubbies are healing right along together. My hubby too is a big guy, but was given only 1465 calories a day. His surgeon has an attitude against heavy people and so I think that is the reason he was only given that many calories a day (3 cans). My hubby too has diarrhea & tummy pains here and there, but I think that just comes from being on a liquid diet. Has your hubby been allowed liquids yet? My hubby has two infections - one in the neck where the connection is and there is now a leak. He cannot have anything by mouth until it seals on its own. Who knows how long that will take! I can tell he's lost a lot of weight already. He doesn't seem to have much energy and I wonder if it is because he is on so few calories?

Happy New Year to you too and I will add you guys to my prayer list.Shelly

maria53
Posts: 10
Joined: Jan 2010

Thanks for the welcome. I tell you 1465 cal doesnt sound like anywhere near enough for a big guy. We are targeting 1200 alone from the tube feeding at night. chuck is allowed to eat soft foods and liquids, but he cant tolerate much at a time. Another tip I learned from a former patient of mine is that you should not eat and drink at the same time. eat as much as you want and drink as much as you want but space it at least 1 hour apart. Too little stomach tissue remains for digestion if food is diluted with liquid. We are using rice and bananas to try to bind up the inevitable diarrhea from the tube feeding. Another thing to consider is you husband will need extra stores if chemo or radiation will be done later. Chuck also had a resection of his right lung to verify nodules there were not involeved (thankfully not), and all of his post op problems revolved around his lung rather than the gut. He was scanned at least 6 times during hospitalization and his anastamosis is tight. He was allowed clear liquids on Weds and soft (mashed potato) diet since home. I am sure your husband will feel better once he can eat or drink. I would definitely check out his calorie requirements to ensure healing and strength. Maybe a nutricionist from the hospital or home health? Hang in there and good luck. Maria

survivorfam
Posts: 43
Joined: Jan 2010

My husband had his surgery Dec. 10. He also developed a leak and infection at the connection site. He is just beginning to have clear liquids. My guy wasn't very big to start with, 150 lbs before surgery. He's definitely lost more weight but is up to around 2100 calories through feeding tube. He has been throwing up every single morning, but not today, thank goodness. I can't imagine my husband being able to survive on so few calories even at his size. Our home health care people had the wrong orders when we got home and had my husband on only 720 calories. A phone call to doc helped with that. Did your doc order so few calories? Today is the first day he hasn't had diarrhea but still seems to be very sore. He goes back to the doc on Mon. and we are hoping he will get the final word that his leak is completely healed- they were a little iffy on our last visit.

Will keep you in our prayers,
Jane

Pghmomma
Posts: 161
Joined: Nov 2009

Your husband sounds like my dad weight wise. Before surgery he was at 170. He is now down too 155. He only gets 4 cans of his feedings at night because the 5th can makes him too full and causes him to have a stomach ache. So 4 cans are 1000 cal. He also had a leak that went unnoticed after surgery. He passed his leak test. But he filled up with fluids and had an infection so they had to operate again to flush him out and saw that he had an ulcer starting to heal the hole. He is allowed to have clear fluids. He is soo sick of broth and tea, he wants food nowwwww.. He goes back on the 7th and hopefully they will let him have food. He also is having Diarrhea alot since he is just putting liquid into his body.

I hope your husband is allowed to have something other then Clear fluids.

one day at a time,
Tina

survivorfam
Posts: 43
Joined: Jan 2010

My husband went back to the doctor today, and after almost 4 weeks, he is finally getting to start liquids and if all goes well, soft foods in the next few days. He too wants food NOW. It's so hard to say no when you know they're hungry. He will continue to be on tube feedings 24/7 until he puts some weight on. He didn't lose any weight this week so we are grateful that he is advancing.

Praying that your husband will have good news on the 7th.

Jane

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