Anyone Caring For Someone who Uses A Feeding Tube?

Hi @wwill. I'm tagging @nicollissa on this discussion. She too had (has?) and Hickman catheter.

Will, Is the Hickman line a temporary or permanent nutrition solution for you? How long have you had it?

My hickman catheter was placed due to short bowel syndrome as a result of long term crohns disease and many surgeries, blockages, etc. It will be permanent solution as I was loosing weight and malnurished and not absorbing nutrients from my food. I have to explain to alot of people that I eat through my heart,not my stomach. The liquid perscribed nutrition goes thur a catheter in my chest into a large vein that goes into my aorta. It is then pumped thru the veins in my body. I add vitamins to the solution, and have been taught how to administer the feedings and care for the catheter. I have had my catheter for a bout a year and a half. I will have it the rest of my life. Also, I have problems with dehydration due to high output from my ileostomy. I can administer fluids thru the catheter also. I hook-up my feedings around 7:00p.m., and it runs overnight about 10 to 12 hours. It does take some getting used to. Sometimes in I life you do what you have to do. I hope this answers some of your questions. I think the confusion comes from getting fed thru a catheter that goes thru your heart and veins and by passes your stomach; v.s. a tube that goes into your stomach.

So with a feeding tube you do not have any taste of anything and you can not eat anything form your mouth. My doctor told me if I do not start eating more .That he wants to be me on a feeding tube. I just do not if I want to do that.

@fcleaner1 You can see my husband's story above posted in May of 2018. He would not be here without the tube. It was removed 3 weeks ago. Unless you have swallowing issues, the tube doesn't prevent you from taking food by mouth. You can also put your meds through the tube.

I only have expierience with a tpn thru a hickman catheter. If you can still swallow and it is ok with your doctors, you may still eat what they advise. And yes, that you can taste. But I cannot taste my tpn solution, which is what keeps me alive.

I have a GTube and I dont use anything to cover it. Just wash it with the soap water when I shower, dry the skin carefully and attach the end to my bra or with a silicone tape. At the beginning I used the pouch and some slit gauze but the doctor told me just to wash it in the shower and it is working great. Hope this helps.

Hi. My husband's feeding tube balloon deflates about every 3 months and we have to go to the emergency room to have a new feeding tube put in. Any experience with this? Haven't heard from anyone else who is having this happen. Thanks.

@walisky Hello and welcome to MayoClinicConnect. Here at Connect, we help support and help each other. Have you mentioned this problem with the tube deflating to your husbands doctor? Is your husband seeing a gastroenterologist? Usually these specialists have a specialized nurse who is able to help with feeding tubes. Why don’t you give the office a call to see what they might suggest? Have you already learned how to care for and manage the tube and the stoma? Gee, that’s a lot of questions! See what you can find out in the next day or so. You can also go to the wound and ostomy nurses website. They have a function to help you locate a specialized nurse near you. http://www.wocn.org Let us know how you do! This isn’t an overnight fix, but it will give you some future resources

WWILL, What a splendid solution for your independent care for you. Yes, we do what we have to do.

From 1998 to 2000, my husband's mother used a G-tube at home with us as inexperienced caregivers and a family care nurse who didn't know how to provide tube feedings. The home health care nurse firmly changed the plan for a reasonable schedule with a reasonable amount of nutrients. My mother-in-law decided we could manage without a home care nurse, so we advertised for a Monday-Friday aide with tube feeding experience and airway care for a partly-paralyzed throat. In 1998, I took a class in Managing your Home Care Provider presented by Washington State's Protection and Advocacy and learned how to advertise with a concise newspaper ad, how to do a telephone screening interview, A local voluntary care management service provided by a cloistered convent of women who had been health care professionals maintained a list of certified home caregivers and upon our application with a fee, provided a list of daytime providers for part-time employment. My mother-in-law decided to personally interview three of the applicants. One patted her on the head, causing a very short interview. The single parent young woman with nursing home experience was hired for 5 days a week. We learned the payroll process for a domestic worker that the IRS and the state expected. We set up a medication and nutrition and aspiration care schedule and personal care routine, sharing the round-the-clock tasks. My mother-in-law and her son provided payment to the caregiver. Sadly the tube feeding process and aspiration care was not the best, with at least one bowel infection and declining health. Tube feeding with a combination of nutrients, including real food, might have been better. I hope enteral nutriton care for folks with swallowing problems has improved immensely!

@walisky Have you been able to get more education re: the feeding tube? If so, can you tell us about it since it might help others?