Feeding tube patients: What's your experience?

First of all, congratulations to your hubby. The reason, I believe, that the sight or smell of food, etc., that your husband was experiencing is because during this type of operation, the vagus nerve is severed—so you no longer feel full nor hungry.

Yes, our pump is detachable and rechargeable and he does have the backpack (although he hasn't chosen to use it yet). Formula overnight would be the best solution but it causes nausea. As I said, we break it up. Yes, the Boost is by mouth and it's worth 530 calories. He does take Ondansetron, as well as Prochlorperazine, both of which offer minimum relief of nausea.

After his first session with the hypnotherapist he had an entire yogurt by mouth (usually he'd have one spoonful and that would be it for him. He also ate about 80% of both a scrambled and one piece of bacon—all without nausea. I feel that we've finally turned a corner but it's going to be a while yet until we can talk about getting his tube removed.

Thank you for all your suggestions and congratulations and best of luck to your husband.

Yes, our experiences are very similar - also a J-tube and also the overwhelming nausea worsened by the sight or smell of food, fear of vomiting, also have the goal of 2,000 calories a day plus water 6 times a day. Is your pump detachable and have a rechargeable battery where you can put it in a backpack and have mobility? When my husband was at 4 cartons it was at 76 mL/hr going from 7 pm to 7 am. I assume the Boost is by mouth, correct? If your husband does better getting the tube feeding during the day, then the ability to move around should help keep the formula moving through his gut. We chose to remain free of being hooked up during the day. He also has been sleeping on a recliner chair since diagnosis, that helps a lot. We are a little bit ahead of you in that his tube will be removed next week, he has met the goal of intake by mouth as laid out by the Mayo nutritionist. He still has no appetite, eating is a job and every intake is written down with calorie content, foods are chosen to be bland and fairly similar from day to day. The nausea is finally gone but it persisted for months with some help from Ondasedron 8 mg. Since your husband already tapes the tube to prevent gravity pull, I have no further suggestions on that issue, sorry.

My only experience: any inflammation around j-tube site needs to be taken seriously.

First, formula is delivered at 100-ml/hr (I slowed it down from 110 per). Husband seems unable to tolerate too many cartons in succession and also deals with them better during the day rather than overnight (less nausea). I give him four containers per day, either broken into three separate times, or all overnight. Four containers will give him 1,500 calories of formula plus 530 calories for one container of High-Calorie Boost. I try to get him to consume 2,000 calories total for every 24-hour period. Of course it’s not easy as he asks me to stop the formula if and when he becomes nauseous. Food consumption orally is very little so we must rely upon the formula. As a side note, his not eating very much is due to a mental block—afraid of vomiting. Just the other day he had his first session with a hypnotherapist and we feel that this will be a success. Once he eats regular food and gets rid of that tube, I believe everything will come together.

What you are doing, as it relates to tube maintenance, is almost exactly what my husband has been doing all along. The differences are minor: he uses Hibiclens for cleaning and Desitin as a barrier cream (which includes zinc oxide). He also tapes the end of the tube the way you do and uses the same type of tape that you describe, and also gets the split sponges from Amazon.

He has the balloon-type j-tube, which is the type most likely to come out. The original tube when placed during surgery was in from early June until late October. When it was eventually replaced, he received the balloon type. The problems thereafter were: tube deflation (which was re-inflated) followed a week later by the tube falling out and being replaced (with leakage around the tube for several days); and then recently the tube just fell out during a feeding—it was replaced in the local ER and the leakage has been present since (8 or 9 days ago).

These pictures show how the tube is secured to the body to prevent its weight from dragging the whole contraption down and out by sheer gravity. Also, by using different 1" paper tape from the 2" tape used on the split sponge (with no overlap), I can access the port throughout the day for hydration without disturbing the sponge or the flange. I also tape the tube to the body while tube feeding is going on with the pump - again, to prevent gravity pull.

After you clean the area around the flange and secure the split sponge with 2" paper tape, do you secure the hanging tube to the body? I place it parallel with the flange on either side of the flange and secure it to the body with a couple of strips of 1" paper tape. That prevents the weight of the tube and tip from pulling the inflated balloon downwards. Let me know if this is not clear and I will post a picture of what it looks like when done.

Question for aheid: how many cartons of Nutren 1.5 in 24 hours and how long does it take?
What is the mL/hr? I might have an idea about the nausea, let's first see the facts.

The J-tube just literally fell off once, new tube was put in within 3 hours which is critical, as the body wants to heal itself and close up the hole when the foreign object(the tube) falls. I am meticulous about cleaning the area around the flange - daily now - in the earlier days, there was more seepage and I did it 2 or 3 times a day. The stuff that comes out of the hole is nasty caustic and causes skin irritation and has high potential for infection. For cleaning I use barrier cream generously on a Q tip until it comes out clean especially under the flange. Then, depending on the condition of the skin, I either apply a layer of zinc oxide ointment or a layer of barrier cream. That is a daily decision. I got boxes of 4X4 split sponges from Amazon and change them liberally. I look forward to your answer on the mL/hr.

I survived via j tube feedings for months during my treatment, for which I’m grateful - but, maintaining the j tube was challenging. Mostly infections around it. Resulting from some leaking, but also friction between j tube and skin (that was a regular issue). Antibiotics took care of it.

If you have any kind of j tube issue, I’d address it promptly with the appropriate people. Likely different department than oncology, at least in my experience. Be persistent till it’s resolved.

Thank you for suggestions regarding formula. We switched to Nutren 1.5 and so far nausea is less but still occurs when he takes more than one container in succession. We will give it more time to adjust.

I have another question about j-tubes. My husband had to have his j-tube replaced two times recently. On both occasions they just deflated and fell out. My question is about leakage from the stoma afterwards. The leakage consists of bile mixed with formula and comes from around, not through, the tube. The first time this happened, the leakage stopped within several days. This current event has lasted a week so far. I think this may be caused by movement when pushing the new tube in—perhaps the movement widens the hole in the jejunum but then eventually the opening closes around the tube again. Has anyone had this experience? Is my assumption correct? Or is this something to worry about? Suggestions are welcome.

@dcramer, I hope you saw the helpful posts from several members. How is your husband doing? How are YOU doing?