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Kathflan's Message Board Messages

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Check with your insurance company.  Many have nurse case managers/advocates who can help.  I would also check at the hospital.  Hospitals have case managers/social workers who usualy help with discharge planning and care issues. 

Hi Bart,

I think that some type of educational materials would be an essential resource for those post esophagectomy.  In 2008, at the age of 37, I had surgery to remove a tumor near my esophagus.  Unfortunately the tumor had infiltrated my esophagus and they had to perform a total esophagectomy.  This was not an outcome discussed prior to the surgery so it was a bit of a shock to wake up to.  After two weeks of waiting for the pathology, I was fortunate to find that my tumor was benign.  

I'll be the first to admit that the adjustment for me was overwhelming.  There are limited resources for the post-operative issues and until I found this site and some wonderful survivors I was lost.  I didn't realize the myriad of issues that went along with the surgery it self.  There's the difficulty eating, reflux, lactose intolerance, and dumping syndrome.  I also noticed the difficulty in getting used to the new feeling of swallowing liquids - it was strange and uncomfortable.  I vomited often and experienced constipation that put me back in the hospital.  I waited until my throat was so small that I couldn't swallow pasta to contact the doctor for a dilation (I thought the difficulty swallowing was typical post-surgery).   The psychological effects from the surgery were also a lot to deal with.  The shared experience, advice and helpful tips I have found here and through other people who have had the surgery have been invaluable to me and my family.

I think if I had a resource like you are hoping to put together, these issues would have been more tolereable and somehow knowing what to expect makes things esier to deal with.  I would be more than happy to share with you the things that worked for me in dealing with many issues. 

I am happy to report that I feel like I have adjusted well to my "new normal".  I would have never believed I could feel this good again.  Most people are shocked when I tell them what I have gone through.  I know that I am very lucky to have not had a diagnosis of cancer and not had the additional issues to deal with that so many others do.  There are so many amazingly strong and supportive people here that I'm sure you could make an excellent resource for those about to face surgery.

Kathy

I am 2.5 years post esophagectomy.  I recently found a great deal on an adjustable bed and got one.  Since that time, my reflux episodes have decreased by about 95%.  I have also found that I now wake up in the morning without the burning and mucous in my throat that I had been experienceing.   I highly recommend investing in one of these if you are able to. 

In the past, I used Maalox chewables and liquid in addition to my taking aciphex.  Sometimes when it was real bad, I would eat some Cheerios after the maalox and that seemed to cut down on the burning.  I would also move to the recliner and wait for it to go away and then sleep in an upright position. 

Anyone else experience cramps/pain below the ribcage.  This happens at times when I cough, bendover or spontaneously.  The pain is sever and I have to stop whatever I am doing (including driving).  I found ice helps sometimes.  Just curious if anyone else experiences these and if you have any advice.

 

Thank you!!

I had it done 5 or 6 times the year following my surgery.  It was like every montrh or so it would close up.  At first I would wait until I could not eat to call the doctor, but then I started going as soon as I noticed a problem.  One day it just stopped happening.  I would definitely let the surgeon in New York know about it.   It is definitely different for everyone.  Hope he feels better soon.

I had about five dilations after surgery.  My surgery was 1/18 and my last dilation was 11/08.  I used to think it was not helping as the dilations would only last a few weeks.  My last dilation it seemed as though things just clicked and suddenly it was better.  Definitely talk to your doctor....sometimes these things just take time.  Good luck.  I hope you are better soon.
If you google "post esophagectomy diet" you will get a few links to educational hand-outs from the medical centers.  It is difficult to figure out what you can and can not eat.  I made a few mistakes in the beginning as well.  Glad that your husband is doing so well after surgery (minus the bagel incident).

I had a total esophagectomy 1/08.  I continue to have bouts of reflux (as many do).  I was told this reflux is not really acid as my stomach doesn't produce much.  I will be asking my GI this question oin my next visit but was wondering if anyone knew if the other substances (i.e. bile/food) will cause damage to my "new" esophagus (aka stomach) like acid does to the esophagus?  I was put on a medication called sucralfate which forms a protective barrier and seems to help a little bit.

One reason I ask is due to the post about adjustable beds.  I was thinking of getting one but decided I can deal with the reflux.  I then thought if I am causing long term damage to my body by just dealing with it, it would be worth the investment to get the bed.

 

 

I had the surgery a year ago.  I always had trouble withthe 6 meal thing as well.  I now eat 2-3 meals and have 2-3 snacks a day.  My meals are smaller than post surgery, but bigger than after surgery.  I always had trouble gauging when to stop and would suffer the horrible pains from eating too much.  Every time I would do it, I couldn't understand why I hadn't learned my lesson yet;)  It got a lot better.  I still occasionally over eat but I think my mind is beginning to reconnect better with my GI system. I still do not drink with my meals.

 I started drinking soda about 6 months out of surgery.  I would pour it and let it sit for about an hour and then drink it.  One day, I stopped tolerating it (got really bad stomach pains).  I am now gradually re-introducing it as a special treat(somtimes risking stomach pain).  I had a lot of trouble finding a beverage to drink as I have had trouble tolerating juices and milk.  Right after surgery I drank a lot of caffeine free iced tea with extra water in it.  I now really enjoy cola flavored icees/slurpees - not the healthiest drink, but satisfying.  I haven't tried a beer yet because the carbonation factor scares me.  I think if you want it, you should try it.  I do enjoy an occasional glass of wine.  I did find that wine can stimulate my appetite and helps me eat better.  Beer may do the same.

 Good luck with your scan.  I will keep you in my prayers.

If you haven't already, try a google search for esophageal dilation.  As the pp stated, dilations are done for different reasons and the number of times is probably based on a few different factors.  I have had 4 procedures done as the scar tissue builds up at the site of reconnection after esophagectomy.  Did the doctor who performed the procedure in the past explain what was going on that itr needed to be done?
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About Kathflan

Esophageal Cancer

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