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.

The therabyte is usually very expensive (anywhere from $350 to $800 without using medical insurance) and does the same thing as the tongue depressors. Ive used both and for me the tongue depressors did better. I had the help of a great physical therapist who really knew how to get the most range of motion out of me. Theres even another device thats similar but Im sorry I forget the name of it.

When doing rads, scar tissue builds up making jaw openings limited. Feels to me like they contract slowly over time. Unfortunately often patients dont see any major advances. One thing I noticed, as soon as I stopped or cut back on the exercises, my jaws tightened up again. With lots of hard work and dedication your husband can make some progress, it may not be as much as hoped but he should gain some range of motion after doing the exercises.

Good luck!!!!


Interesting study comparing therabyte to using tongue depressors

The other is called Dynasplint, which was said to be better than Therabite, although I never used either. I've used tongue depressors too, and manual manipalation with my fingers by crossing my index finger and thumb, placing the thumb on the top teeth, and index finger on the bottom teeth, and slowly stretching, holding, repeat several times.

There is another type of acrylic resin "cork screw' devise for trismus that didn't look too friendly for my teeth, and invisioned it getting stuck too, so I never used it either.

I meant to chime in earlier about feeding tube issues. I hear a lot about seepage around the stoma and in almost nine months now, I have used less than ten gauze between my tube and skin. I have had few acid issues and my stoma is rarely red. All my doctors have asked me what I do and they ask to see my stoma every visit now to catch me irritated or in pain. A new GI Doctor even asked some nurses to come look. I work really hard to keep the acid manageable and I only clean my stoma once a day when I get up in the mornings.

I got rid of the 4 X 4 gauze as my skin is sensitive and tape is a bad thing for me. I have worked with the DME I use and switched to 2 X 2 which stay well withiut tape. I also have used baking soda at the first sign of seepage to eliminate skin breakdown. If a little baking soda doesn't help, I have even sprayed Spry xylitol spray since xylitol is antibacterial.

My supply list includes Clobetasol, one of the strongest corticosteroid ointments when any red pops up. The only bacteria of concern to me is staphlococcus aureus that causes skin infections and Mupirocin, generic Bactroban, works the best for skin infections. With a bad injury, I used Desitin as a protectant for 4 days.

I also only get seepage with formula and it is worse when I travel with a continuous feed pump for hours.

In the 4 years Kris had the PEG, he never used anything. No gauze, nothing.
He never had any issues, except the occasional over granulation. For this , he used Maxitrol eye ointment. ( it works)

Tammy

Tammy, this is the first time I've heard of anyone else not using anything. I'm glad to hear it. I have silver nitrate sticks left over from my bad burn. If I get a granuloma, that's what I'm using. It might hurt but it repairs things quickly. I'll have to check out what's in Maxitrol. Thank you!

I had two peg tubes, one for five years with intermittent use, and for the most part, didn't use any gauze or buffer either. I found the moisture from them promoted bacteria, even though drying the area with a hair dryer, and applying Bactrim or clotrimizole ointment when needed, and some doctors said you can develop a resistance from frequent use of the antibacterial or antifungal. They were probably trying to talk me into taking the peg out after treatment was done, but it wasn't my first or would be my last treatment, and I didn't want to go through removing and putting one back in again like before, so I kept it, and eventually needed it again.

I've used the mesh type band to secure it sometimes, other times nothing. Tape made my skin itchy and red also.

Good luck

Paul B, I have some tape I would like for you to try if you would like. It is amazing. It is used to tape an ng tube to newborn NICU patients cheeks in some Seattle hospitals. I buy it on Amazon and use to secure my long g tube across my stomach. I use three strips at a time. I am allergic to most all tape and the sensitive skin tape was outrageous to buy. It leaves no residue, stays on in the shower and has never accidentally come off. If you would like to try it, send me a pm with your address and I will send you several strips in an envelope.

Jo, do you know the name of the tape? It sounds like this could be a big help to many people here. Thank you!

Thank you, Jo! I had my peg tube taken out in 2015, after the tube cracked from wear and tear after 5 years, and wasn't using it anymore anyway. I needed another procedure because the stoma wasn't closing on its own, probably from having it for a while, but everything is ok now. Sounds like tape many would try, as Christine mentioned.

Thank you

The tape is called self-adhesive dressing Retention sheet. The company is called Reliamed. I order a couple of boxes at a time. It runs about $ 12.00 a box. It comes in different sizes, I use the 4 inch x 11 yards. It comes in a roll and has grid lines on the back. I cut the strips on every other grid line making each strip about 3/4 inches wide. It takes me about 20 minutes to cut the whole roll and it lasts about a month and a half. I use three strips each time, so, I use about 24 strips a day changing it after a shower, each feeding and each medicine dose. I have never had a piece come loose even in the shower, it is easy to remove and leaves no residue. I can not say enough good about this tape and have left several 5 star reviews at Amazon. I started out using regular tape which caused real problems, then changed to sensitive tape which quadrupled in price the third month even at Walmart till I was told about this tape. My niece who works in an NICU at a hospital in Seattle tells me they use this tape on the babies faces to hold down their NG tube. The hospital quit ordering it and the nurses were so upset they bought it on their own to use for the babies till the hospital started ordering it again. If anyone would like to try it, I would be glad to send some in an envelope to them, just let me know.

Oh my goodness I misunderstood, I thought you were still using the peg. But, glad to know you are not !