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Rash and tenderness from feeding tube??

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

I hope someone can help me with my concerns about my feeding tube as I don't want to be the type of patient who calls their doctor with a million questions everyday :)

I had a feeding tube put in on Tuesday, June 9th and everything seemed fine. Yesterday while I was doing my daily cleaning of the tube and stoma (sp?) I noticed the left side looks like it is tilted up higher than the right side and I have a rash (slightly red raised bumps) on the left side also. If I gently push on the left side it is a little tender, almost as if the tube is pushing on something. When I rotate the tube daily (as instructed) there is no pain but when I bend over there is an uncomfortable feeling on the left side.

Could this mean the tube on the inside has dislodged itself? Is the rash a sign of infection? I am not running a fever and feel fine other than what I mentioned above. The "wound" where the tube was inserted looks fine and does not hurt and I am following all of the instructions in the care booklet I was provided after having this procedure done. I have not started using the tube yet but I do have some "stuff" looks like liquid that has come into the tube from my stomach and I'm afraid it will either clog the tube or cause an infection.

If anyone has had this happen to them I would love to hear from you, I just don't know if these are things I should be worrying about and don't want any of this to delay the start of my treatment on the 23rd.

Thanks in advance for any help you can give me.

Glenna

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pennynl4
Posts: 49
Joined: Jun 2009

Glenna,

I would call your doctor and explain everything. We have only seen the chemo doctor once and he even gave me his pager number to call if we had any concerns at all. You are your own advocate and need to get some answers. Don't be afraid that you are calling too often because this is very important. You need to call tomorrow morning. It doesn't seem right so you should ease your mind and call.

My husband starts chemo June 24th. He had a port put in last week and I hope he will get a tube. He will be having radiation on his neck.....which will cover both sides of the neck and in his mouth too. We are not sure when he will start radiation.....maybe that same week. He will get his mask on the 18th.

Anyway good luck and let us know what the doctor says,
Penny

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

Hi Penny,

I saw the doctor who put the feeding tube in yesterday and feel much better now. A visiting nurse came out 2 days after I had the procedure and she was supposed to give me syringes for flushing the tube and go over any concerns and questions I might have. She didn't do any of these and I was not pleased with the visit at all. The doctor went over everything with me and said he could understand my concerns and frustrations as I was basically left in the dark about what to watch for and how to care for my tube. He was very patient and went over everything with me, he also gave me the syringes I need and flushed the tube out for me as it had become clogged - and I'm not even using it yet.

He really wasn't sure about the rash, he thinks it may have been caused by the saran wrap I was told to put over my feeding tube when I showered for the first couple of days. He also said I shouldn't worry about it and it wasn't necessary to put anything on it as it should clear up by itself in a few days.

Thanks for the advice and I hope your husband does well with having his mask made tomorrow. Tell him to relax, I've had mine made already and it really was not the terrifying experience I thought it would be. I don't think my way of getting through it will help your husband though - LOL. I pretended I was having an expensive facial in an exotic spa - a good imagination helps :)

Take care and I'm hoping all goes well with your husbands upcoming treatments. I will be starting mine the day before he does so if our treatments are anything alike maybe we can help each other through the rough days. You are both in my thoughts and prayers.

Glenna

pennynl4
Posts: 49
Joined: Jun 2009

Hi Glenna,

I am glad you got your concerns taken care of. I thought the reason for the visiting nurse was to help you with the feeding tube. Glad you went to the doctor.

My husband went to get the mask fitted on Thursday. They even told him he would get a call on Friday to schedule radiation for Monday. I thought that was a little quick. We did not get that call. We were both a little surprised because we were told it could take up to a week after the mask is made to start radiation.

That would be nice if you and my husband could help each other through this. He hasn't visited this site.....maybe because he is so nervous about it all. If he doesn't go on this website, I will still communicate with you. It always helps when there is someone else going through the same thing.

What kind of Chemo will you be getting? And when did you say radiation starts?

I'm not sure if he will be getting a feeding tube or not. One doctor said he would, the radiation doctor said maybe not even though his mouth will be like hamburger and hard to swallow. I am very happy with the doctors, except I wonder why one doc was for a feeding tube and the other wasn't. I guess we will have to wait and see and in the mean time, I hope my husband doesn't lose too much weight. I have been trying to fatten him up, but he lost weight when he had his radical neck dissection and isn't back up to that weight yet.

Take care and and God Bless,
Penny

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

Hi Penny,

The doctor and I both agree that the visiting nurse was supposed to go over all of the cleaning and flushing procedures with me but she didn't bring anything with her (don't know why she bothered to come). I feel much better having had the doctor check it and show me how to flush it twice daily.

I'm still a little confused on how they decide who needs a feeding tube also. I don't know if it depends on where the radiation site is or whether they expect the patient to have difficulty swallowing. Because of the size and location of the tumor on my larynx I have already been experiencing some difficulty and pain when swallowing. I still eat and drink everything by mouth, the tube is a precaution in case I lose this ability after starting treatments. I have been drinking 2 or 3 bottles of Ensure everyday and it has helped me put on a couple of pounds - the milk chocolate isn't too bad.

I start chemo (cisplatin) and radiation on the 23rd, I have chemo and radiation again on the 24th. After that it will be just radiation each day until my next round of chemo which is supposed to be in 3 week cycles. It seems like it took forever for my treatment date to get here but now that it is only 3 days away I wish I had more time - LOL. I guess no one is ever really ready to go through this.

Please tell your husband to stay strong and visit these discussion boards if he can. Most of the postings on here are positive and they have helped me through a lot of my down times. Reading how other people coped with their treatments and to know they are doing better now has been a great help to me.

I would be more than happy to help you and your husband get through this in any way that I can. Maybe we can compare notes on side effects from the treatments and help encourage each other. You can post on the discussion boards or send me a private message on this website anytime you need someone to talk to. I know the importance of having someone to talk to you and will be here for you if you ever need me.

Take care and God Bless you,
Glenna

RoseEm's picture
RoseEm
Posts: 32
Joined: Apr 2009

I had a tube for almost a year. Occasionally, there would be painful swelling or other problems and I would call the gastrointerologist who always would see me, or send me to someone who could check it out. You should never, ever feel hesitant about calling your doctor. Do not ignore the list I'm sure you got of "when to call." The tube wasn't fun, but after a while, it was just part of me - and getting it out is a milestone to look forward to!

I had the Cisplatin and other chemos. I wish you the best. I've been in complete remission for just over a year. Good luck and remember what your goal is.

pennynl4
Posts: 49
Joined: Jun 2009

Hi Glenna,

I can't believe the visiting nurse didn't go over everything with. But at least your doctor took care of all your concerns.

I bought my husband Ensure too and he has been drinking it too. He is trying to gain back the weight he lost from his neck dissection on May 20.

My husband will start chemo June 24 and then once a week for 6 weeks. He will be have radiation 5 days a week starting sometime this week for 7 weeks. He had his mask made on Thursday, June 18.

If he doesn't get on this website, maybe you and I can keep up the communication. I know how important it is to have someone to talk to about this. It really helps to hear how everyone copes with the different side effects.Thanks for all your words of encouragement and support.
Penny

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