Hello everyone. I have dropped a lot of weight since my surgery and now that I'm in radiation it is extremely difficult to eat. My mouth is burning when I eat and I also have no desire to eat. My doctor was reluctant to put the feeding tube in right away but that might have to happen. The doctor said he'd put a feeding bag in via surgery into the left part of my stomach because the right side has a gall bladder scar. he was not specific about side effects, length of operation, etc. I don't want to have another surgery. Has anyone been through this treatment? What has your experience been like with a feeding bag?

Hi Sheila! Im sorry you are struggling with eating. This is something that will turn into a downward spiral very quickly. You must swallow no matter how much it hurts. You do not want bigger problems down the road with having to relearn how to use those muscles. Even if its a few sips of water several times per day you need to do it. More importantly, you do not want to become dehydrated and end up being hospitalized. So if for no other reason, please force yourself to eat and drink. Daily you should be consuming 2500+ calories and 48 oz water. If you cant get that in every single day then yes you will need the feeding tube. If you do not get enough calories and water every day then you will feel terrible. The worse you feel the more you dont want to eat or drink. It will turn into a vicious cycle with the result being you getting stuck in the hospital for a while.

Im unsure what your doctor is referring to with the term feeding bag. I would think its the usual PEG tube that most people get. When you have a feeding tube put in you will be sore for 2 or 3 days. Usually patients are kept overnight in the hospital. Make sure you leave with full instructions and being taught how to properly feed yourself. All caregivers should also be there so they can learn at the same time.

The formulas can be tricky to get the right one as there are at least 50 different ones. I would purchase Carnation Very High Calorie formula by clicking on the Amazon link on the forum pages. I would substitute 2 cans of the prescription formula for 2 cans of Carnation VHC. It has 560 calories per can but it is thick so you will need to add water if using it in your feeding tube. Make sure you get a feeding pump, if you dont get one ask for it. This way you can sit and watch TV or sleep in bed while you are doing a feeding. Some people have sensitive stomachs and have to use the pump because other methods are too fast. If you get nausea from the formula, slow down the rate and add a can or 2 of water.


Most importantly is your nutrition when you are going thru radiation. I cant stress this enough!!!! Ask your doc for something called magic mouthwash. Its prescription and can be made a few different ways. Mine was lidocaine, malox and benedryl. It will numb your mouth enough to eat. Just swish it around in your mouth for about 15 seconds then spit it out. Something needs to be done right away to get you back on track. You will feel so much better once your nutrition improves. I know it hurts to eat and drink but you must do it.

Please add a signature so its easier for us to help you. Go to the 'my stuff' tab and click on profile. At the bottom is a white box, type your info in there. My advice might be different by knowing your history. For example did you just begin radiation a week ago or are you in your last week? If you are at the end I would suggest a nasal feeding tube as its more temporary and you dont need to go thru a surgery to get it.

Best wishes!

thanks for writing Christine. You gave a heck of a lot of information. I am in my 5th week of radiation and have 9 more days to go. I'm trying to avoid an operation or a feeding tube and I hope I'm making the right decision. I do want to gain weight but I'd rather not have another operation. I know you suggested the nasal tube but my doctor said that wouldn't work for me. I am supposed to see him on Aug 12th for the procedure but I think I should really speak to him first again because he really didn't explain everything fully and with everything on my mind sometimes I don't retain all the information . It's nice to speak to someone who has been through everything. Just knowing that I'm not alone helps out a lot. God Bless

SJones

The "problem' with a PEG is mostly psychological and prominent in boomer age males. I plead guilty. With only nine days to go in radiation and if your weight has remained steady, it's hard to imagine why you would need or want a feeding tube.
I fully understand why you would be hesitant about getting a PEG.
You have the right idea to talk to your doctor to be sure your questions are answered. It turns out that almost all the OCF posters opinions on PEGs simply mimic those of their doctors (myself included). I've done TX both ways, with and without a PEG. Christine is so right on how important it is for you to continue to swallow.
Keep the Faith

thanks so much for your response. trying to put peg out of my mind - will call doctor mon or tues to cancel procedure.have so mant questions popping up all the time. your help is appreciated.

I lasted until about a week post Tx and I finally relented to letting them put in a nasal tube. Takes a few minutes at most and I used it for 2 weeks and it really really helped my stupid butt and I pulled it out at home on a Friday after my doc reluctantly said I could do so. If I were you I would inquire about the nasal tube.

I have a feeding tube and will always have one but the responses have created a question for me. Why do you think this person needs 2500 cals a day? If you were eating reg. food the reg. way that would be a very high calorie count. I am just curious.

The extra calories are because the body needs them to heal during radiation. My dietician said I need 2100 calories and 85 grams of protein plus 64 ounces of water each day of treatment. It varies somewhat depending on weight and activity level.

Your body burns up calories at an incredible rate when you are a cancer patient. It works hard to get rid of the disease. Thats why you need extra calories. Protein is what heals so many of us use protein powder added to our formula or any beverage.

When I was going thru tx, many days I would consume over 7000 calories per day and I still didnt gain any weight.

david!? You did that too? ewww how could you guys pull that out? Ron did it twice! I sit here just shaking my head, I don't think I could do something like that, what if something went wrong pulling it out? Men...