Log in or Register to participate in these discussions

Trouble with food after complete gastrectomy - rejecting

Trouble with food after complete gastrectomy - rejecting

Posted by racer58 on Jan 26, 2019 10:45 am

My husb has had a complete gastrectomy - he has no stomach, spleen etc.  He is having major problems with getting food to stay down. He is unable to eat or drink anything. He thinks his body may be rejecting food as no need as no stomach. They are experimenting with enzymes and yogurt but that comes up also. Has anyone had this happen or can you suggest something that could help. He started acupuncture before being admitted and on iv. Thx. chris

Re: Trouble with food after complete gastrectomy - rejecting

Posted by Elsie13 on Jan 27, 2019 5:06 pm

Hello racer58‍ .  So glad you have found us here at cancerconnction.  Sorry to hear your husband is having these problems. Miguel‍ , nancy180‍ , Brighty‍ , do you have any suggestions for Racer/Chris? 

Re: Trouble with food after complete gastrectomy - rejecting

Posted by ACH2015 on Jan 27, 2019 6:00 pm

racer58‍ 

Hi Chris,

Has your husbands surgeon etc. provided any follow up with gastric rehabilitation teams or a dietitian for suggestions towards managing the symptoms? that

I am including this link from the Canadian Cancer Society http://www.cancer.ca/~/media/cancer.ca/CW/publications/Stomach%20cancer%20UYD/32091-1-NO.pdf that talks about stomach cancer. Starting on page 11, there is good information abut symptom management. Most importantly is the suggestion to discuss concerns with the medical team, dietitian etc. Common suggestions are to consume several smaller meals rather than the normal breakfast - lunch - dinner. This allows for easier digestion. Also, your husband may need to use a trial and error method of consuming foods, listing and avoiding those foods that trigger vomiting or diarrhea. This is a huge change in both you and your husbands life - surrounding eating.

This link talks about "dumping syndrome" http://www.cancer.ca/en/cancer-information/cancer-type/stomach/supportive-care/?region=on#dumping and sounds like what you describe about the inability to keep foods down. There are suggestions to assist in reducing the inability to hold down food and the need to ensure nutritional balances, vitamin, mineral and hydration values are maintained.

I looked through the community and could not find any recent posts or members in your husbands situation. This link is full of good information and suggestions from the CCS about the challenges faced when you have your stomach removed. http://www.cancer.ca/en/cancer-information/cancer-type/stomach/stomach-cancer/?region=on

When in doubt, check in with the specialists to seek remedy and assess any potential complications for as quick a solution as possible.

Keep well and let us know what solutions come your way.

ACH2015 - Andy.


 

Re: Trouble with food after complete gastrectomy - rejecting

Posted by Brighty on Jan 27, 2019 7:38 pm

racer58‍  thank you for posting.   I'm sorry you find yourself  in this situation.    My fiance  had esophgeal  cancer  and could not get anything  down orally, not even water.    Unfortunately  for him his only option was a feeding  tube.      That might be necessary  in your husbands  case, at least for the time being, until another  solution  can be found.     You can put almost any liquids in the tube.      He lived on ensure for quite a while .    You can put his meds through the tube as well as  shakes.   Was a feeding  tube  discussed with his doctor?   The most important  thing  for him at this point is for him to keep nourushed and hydrated as well and keeping his weight and strength  up for any other treatments or procedures he may have to go through .   He needs to have the strength  to endure it.    Gwt those calories  into him any way possible!!!!     Please keep us posted as to what is happening  or if you find out any more info.   

Re: Trouble with food after complete gastrectomy - rejecting

Posted by Huelam on Jan 28, 2019 8:41 am

Hi there, 
I’m really sorry that you have to find yourself in this situation, watching your loved one suffers and feel so helpless.It’s my first post here at Cancerconnection.ca although I’ve been joining the group for quite sometime. I have been reading posts silently via emails. And it helps me tremendously not feeling alone while battling cancer ( Breast cancer unknown stage stade 2 since February 2018)

I decide to jump in answering your question because my mom had a similar problem after having her whole stomach removed in 2017 (Stage 4 Non-Hodgkin lymphoma with enlarged lymph nodes in stomach bursted hence gastrectomie - I was one of her main caregivers)

In my mom’s case, she had problems keeping food down even with water after around week 3-4 post op. It came gradually once or twice a day then progress to the point she couldn’t keep anything down. She was at a rehab center at that time and doctors and dietitian were all scratching their head, not understanding what had happened with her. They thought she had problems with swallowing but a MBS (Modified Barium Swallows) test came up negative. Finally they sent her for a tentative endoscopy test and found out that because of the scar tissue forming inside where the connection between her esophagus and duodenum, it had a tendency to collect food and with time it became a blockage with nothing passed. They had to use the end of endoscope tube with camera to “ flush” it and had to monitor it closely for that. It’s not quite common the surgeon said. 

Hope it would help you in discussions with your husband medical team asking for endoscopy (they were hesitate to order the test because it considered invasive after gastrectomie). It seems to me that she couldn’t have a feeding tube insert neither  (My mom since passed away)

Sorry that I didn’t have a properly introduction before giving you my input. Wishing you and your husband all the lucks in fighting this awful disease. Huelam


 

Re: Trouble with food after complete gastrectomy - rejecting

Posted by racer58 on Jan 28, 2019 10:20 am

Thank you so much for sharing your info.  He had a scope last week and all looks normal in there so we are still scratching our heads. they've upped his nausea meds to 3 times a day and are giving him enzymes so will see how that goes.

Re: Trouble with food after complete gastrectomy - rejecting

Posted by racer58 on Jan 28, 2019 10:48 am

Thanks so much Brighty - very helpful,

Re: Trouble with food after complete gastrectomy - rejecting

Posted by nancy180 on Jan 29, 2019 12:26 pm

Hi all, 
Hm, I still have a small portion of my stomach so not exactly the same problem. I loved my feeding tube. I would have kept it forever except the staples start to really hurt. 
I developed a bad leak after my surgery so I couldn’t have even a drop of food or liquid for 6 weeks. So I had a feeding tube for about 5 months. 
For a year I went between terrible nausea and then vomiting/diahrea. Now after 3 1/2 years I have pretty well settled into a food routine. 
Perhaps you need to go back on a feeding tube for a while. You can eat on a feeding tube so you can have a bit of both. 
This surgery is so drastic that our systems rebel. I still keep ondancetron and gravel on hand. Most I eat no meat at all, no salad or raw veg. I can eat most cooked veg and I make lots  of stir fries. It took 2 years before I could touch any fruit. In fact I broke down at Christmas and had a mandarin, which came right back up. So canned mandarins are ok but not fresh. Apples have to be peeled and sliced very thin. You get the idea. 
Hoping to return to normal eating is wishful thinking. My first year was spent figuring out what I could eat that would stay down . Now things are pretty good but there are many things I can never eat again. 
If I couldn’t keep anything down I would’t hesitate to go back in for a feeding tube. It will give you time to build up your strength while experimenting with which foods you can tolerate. Good luck and it really does get a lot better!! 
Nancy
 

Re: Trouble with food after complete gastrectomy - rejecting

Posted by racer58 on Jan 29, 2019 1:31 pm

Thanks so much Nancy - I think this is the new normal - hit and miss. I found some great sites ie: recipes on the numerous cancer sites avail. so doing all we can to make this work. A tube was mentioned but maybe he's unable to have one? I'll have to check into that but possibly not ready for that yet?

Re: Trouble with food after complete gastrectomy - rejecting

Posted by nancy180 on Jan 29, 2019 2:50 pm

Hi again, 
when exactly was the surgery? How long did he have a feeding tube? When was it removed?
I often eat 1/2 cup of food several times a day but never at night. Have to sleep fairly upright. 
Eating out and planning big meals is an excersise in frustration. I don’t eat out ever! And I prefer to eat alone. I have one friend I’ll eat with but she’s used to the problems. I choke and cough a lot when eating. That won’t change. 
If he can’t keep food down he’s better off with a tube and then he can stop worrying about it. It will give his system time to adjust a bit. It will never be like it used to be. So perhaps you guys need to have a talk with his team. 
Good luck and all the best. Keep us posted. 
Nancy

Re: Trouble with food after complete gastrectomy - rejecting

Posted by racer58 on Feb 7, 2019 11:40 am

Brighty:
racer58‍  thank you for posting.   I'm sorry you find yourself  in this situation.    My fiance  had esophgeal  cancer  and could not get anything  down orally, not even water.    Unfortunately  for him his only option was a feeding  tube.      That might be necessary  in your husbands  case, at least for the time being, until another  solution  can be found.     You can put almost any liquids in the tube.      He lived on ensure for quite a while .    You can put his meds through the tube as well as  shakes.   Was a feeding  tube  discussed with his doctor?   The most important  thing  for him at this point is for him to keep nourushed and hydrated as well and keeping his weight and strength  up for any other treatments or procedures he may have to go through .   He needs to have the strength  to endure it.    Gwt those calories  into him any way possible!!!!     Please keep us posted as to what is happening  or if you find out any more info.   

 

Re: Trouble with food after complete gastrectomy - rejecting

Posted by Miriam on Feb 15, 2019 4:37 pm

racer58‍ 
Hello all!   I am new to these discussions.   I was diagnosed with a stomach cancer in January 2018.   Chemo, every second week, followed right away for two months.  At the end of April 2018 I had my whole stomach removed, as well as the bottom part of my esophagus.  An attempt was made to give me more chemo at the end of June, but after two rounds I was declared not yet strong enough for it.   
At the end of August 2018 I started radiation and chemo at the same time for 5 weeks.  I was pretty 'beat' at the end of that.  The last 3 treatments were cancelled.
Now I am recovering from all this.  
I seem to be able to eat reasonably well now.   But the volume needs to be small, and preferably nothing too hard.  I also developed lactose intolerance after the surgery.  Luckily there are now many 'lactose free' items available.  Also I found out that most of the very nutritional drinks I could not tolerate.  Chewing well is mandatory.  
Drinking thickend liquids, like a berry soup, seem to go down better than water.  But always in very small quantities.
I am afraid that I cannot give much more advise to your husbands problems.   Definitely the medical team would be the first stop for help.  
 

Re: Trouble with food after complete gastrectomy - rejecting

Posted by Miriam on Feb 20, 2019 1:48 pm

racer58‍ 

I forgot to mention that after my radiation/chemo in September 2018, I was hospitalized for 3 weeks to get extra nutrition via the port on my chest, which is connected directly to the vein.
This is called 'TPN' - total parental nutrition.   The port connection makes is so easy.  
Perhaps your husband has also a port installed by now for the chemos.