hi
anyone have any recommendations on managing the discomfort afterward. My husband is having both tmw.
He rolls in bed a lot.. a fairly fidgety sleeper and I am concerned that will just be make him more uncomfortable . He has sensitive skin to bandaid/adhesives so the adhesive mediplast tape to hold the tube next to his skin will likely be irritating. I have ordered some stockinette mesh bandage so he can wear that around his torso/abdomen to keep the tube in place for night time.

Any thoughts.. suggestions re the early days with the tube, any spillage of gastric contents? and managing the pain>
thank you
paz y luz to all . xoxo

Mrs W,

If the tube is properly secured, there won't be any spillage. Of course, if spillage occurs because the tube isn't held up while it is open, then the gastric fluids may flow out. It is extremely important not to let this happen as you probably know, the fluids are caustic and can cause serious injury.

Your husband should clean the insertion site daily. Try not to rub, just dab at it with saline as rubbing will cause granulation and that may cause leakage around the insertion site. A wound nurse suggested using a barrier cream like Pro Shield Plus on the site before putting the bandage back on as it will protect the skin.

You will get the hang of it fairly soon, I am sure.

You can pick up drain sponges. They may come automatically with the other feeding tube things from your medical supply company. These are 4"x4" gauze pads with a slit half way thru them. They go between the feeding tube's plunger and the body. They get changed after showering or every day if not showering as often. Just make sure to watch closely for any redness or signs of infection around the plunger site. I use a little antibiotic ointment around that area before putting 2 drain sponges on. Also get some paper tape from the medical supply company or the hospital pharmacy. Tape the open ends of the drain sponges so they dont fall off.

What worked the best for me was a pregnancy belly band. I also was given something similar during one of my hospital stays. it was white and very stretchy with velcro closure so it could be adjusted to fit almost anyone. Ive also seen this was available by the hospital pharmacy's durable medical equipment section. Im sure your hubby (like most men) would have a fit about wearing something like a pregnancy belly band over their waist. But it really does work and holds everything in place.

Unfortunately, most of us who got the feeding tube had a couple days where we were pretty sore. Not as many here have gotten a port. But, also remember everyone is different so hopefully your hubby wont be as uncomfortable as I was. I had both the port and the feeding tube and felt like I was hit by a truck for a couple days. To me Im just amazed at the level of discomfort I felt and how this was supposed to be an out patient procedure. I hurt so much they kept me overnight. Just make sure his doctor prescribes strong enough pain meds. Sleeping after the procedure will help him to feel better.

Good luck tomorrow!!!

I have a g tube for feeding and a port. I use "tubie" pads instead of gauze. I buy these from ladies on the Blenderized RN.com site who make them. It is a round surged circle of very soft fabric with a slit half way through. Each has Velcro closure or snap closure. I do much better with these than the gauze. I would be very happy to send you one in an envelope to try. Send me a private message with your address and I will get it right out to you. When I do have a redness problem, I clean the area and apply desitin......a baby diaper rash ointment. Clears up in a day or two. I also use a tape by Reliamed that is incredible. I can also send you more info on this and samples if you'd like to try it.

Thats so very kind of you, Jo!!! Thats exactly what this community is all about... working together

Mrs W.

Have your husband try a tighter fitting shirt at night. The tension from the fabric will hold the port and or tube in position when not in use. (Personally, I can't wear any shirts without an undershirt to protect my port.)

I think your husband will also find that his movements when sleeping will reduce rather quickly. (You wake up pretty fast when its pushed or pulled on.)

Have a spare port available, (in its box), for any emergencies.

Really, after the initial day or so of pain and discomfort, the port or tube will just become another small detail to deal with.

Ideally, this will be a short term issue and will be removed as quickly as possible.

WOW... you are all so amazing and awesome. Christine, BJMPittsburgh, Jo. thank you.
the procedure went well but they had to use General anesthesia because of the trismus ( he currently has a 22 cm range). Even so, the thing no one mentioned but I happened to know about that prevented an ED visit at night was from the trapped C02 when they insufflated his stomach. This casued phrenic nerve trigger and so much shoulder and back pain.. it was a rough weekend.

The suggestions are so helpful. I will go and check out the site you mention Jo. thank you for offering to send one. .. No need, I think they will be useful. .Christine.. the pregnancy belly band is also a great idea. The stockinette mesh is working really well...so we are good with that for now.


the next step is the frustration with delays since the rad onc was away for a week.. so getting to treatment has taken longer than we are comfortable with. It seems a SCC needs to be aggressively treated asap. He isn't having surgery so ...

The trismus is now his issue.. with some pain of the neck/jaw and tired tongue when eating.

he is exercising...

yesterday was the first day I saw anger, frustration and depression in him. This place, at times, feels surreal.

thank you so much JO--the kindness from your heart.. for giving to us in the midst of your own needs.
so appreciate your generosity and thoughtfulness.

Oh, you are quite welcome. Sounds as though you have things going well. You can also go to the site called Joseph's genetic journey. You can fill out a form to receive 6 round tubie pads and 1 or 2 belts. The belts are amazingly comfortable and protect the tube. By using a belt you won't even need tape. I really, really like the belts. All of this is free with volunteers making the pads and belts. It does take a few weeks to get them as they are a very busy volunteer group. It is completely free, you just need to let them know on the form his waist size. Mine fit perfectly.

Mrs W. -

I'm sure you've been inundated with details and suggestions about everything your husband has had to and will deal with in the very near future. So, I'm going to add one more!

The pain and frustration associated with the trismus will probably get worse during and after radiation. Try to encourage your husband to engage in static stretching of the jaw. I've found that by stacking tongue depressors and inserting them between the teeth worked best. If he has 22mm (almost an inch!) have him start at 16 depressors. (Tongue depressors are 1/16th inch thick face to face.) Insert and hold open the jaw open for 30 seconds. Repeat 8 times in succession once a day. Once the pain subsides at this height, add a depressor and repeat.

There are devices out there that accomplish the same thing and are probably more appropriate.