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Feeding tube questions

gingercat33
Posts: 10
Joined: Aug 2010

My mother is on a feeding j-tube after a total gastrectomy. The surgery was July 1, but we had a stricture and that required another surgery so we've only been eating for about 10 days. She is on liquid Lortab that is administered via the j-tube. Has anyone noticed an increase in gas when using this? Or just gas with the j-tube feeding? It makes her have a very uncomfortable night. She takes Zofran, but it doesn't seem to dispel the gas much. You can sit next to her and hear her intestines gurgling away. Also can anyone tell me how long it took their taste and texture issues to be resolved? She feels it will be this way forever, and I've encouraged her to pretend she's in another country where everything tastes different, but she thinks I'm crazy. I know she's just in the dark night of this situation and will come out the other side. But she is struggling and it would be nice for her to hear some words of hope or advice. Thanks.

Terri Lou
Posts: 4
Joined: Aug 2010

I had the same problems with the feeding tube (and more actually).
Ask doc if the "formula" (sorry that's how I refer to the liquid nutrition) can be changed. She might just be having a reaction to something in that particular formula. I believe Zofran is for nausea, so I don't think that would help the gas. Can she take any over the counter meds like Gas X?
Also how long is she expected to be on the feeding tube? In my case, I was able to stop tube feeding when I was taking enough calories from food. That provided a huge incentive for me to eat! But that may not the case with with your mom.
Taste and texture issues come and go and are very different for everyone. Things WILL get better in time. I know it's hard but you sometimes have to force yourself to eat and deal with the taste or lackof it, because yousimply need calories! One thing I heard time and again from others who have been through this is that at first eating is a necessity, then a habit, then it gets enjoyable again. I had my TG in July also, and just one month ago, i was feeling pretty terrible and thinking that I would never feel good again. Now I am doing so much better. You described it perfectly when you used the words "dark night" because that's just what it is. And she will come out of it. She needs to believe this too and it will be even easier!
Tell her to stay positive and eat mindfully. By that I mean try not to be distracted because it's easy to fall into old eating habits, whereas now she needs to take tiny bites, chew very thoroughly, and take a minute or two between bites. I don't know if she has any dietary restrictions, but I can offer suggestions as to what to try to eat, if that would help.
If she's like me, and most people, she's probably trying to judge how she is doing on a day to day basis. You can't do this because you have good days and bad days. Have her pick a day of the week and gauge how she is that day compared to the same day the previous week. Over time, she will see that things are getting easier. If she is able to keep a journal, I think that really helps. It can be as broad or detailed as she chooses. One of the best things about doing this is to look back and see what things were problematic and then you notice how you are overcoming obstacles little by little.
My best wishes for your mother in her recovery, and well wishes for you too as a caregiver!

gingercat33
Posts: 10
Joined: Aug 2010

I just read your response to my mom. These are things she needs to hear. We are doing a little better everyday. She can climb the stairs unassisted and cook her own breakfast! She insisted on being disconnected from the feeding tube last night, so I emphasized that the more she eats, the faster she comes off of it. The recent problem we've had is she has a lot of dry heaving associated with eating and with the feeding tube. This is very upsetting to her. Thank you so much for replying! We need all the support we can get! I'm glad to hear your doing well!

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