@gastrogirl

I am doing okay. I am sure I will feel even better when .. hopefully.. the doctor takes these staples out Tuesday.. there are only 3, but hey I have to lean back and sometimes I unintentionally lean too hard on them. In my sleep I wind up on them too. I am already walking better. I am sure soon able to sit in the car without pain.. and make that trip to the Mayo Clinic. Maybe play with my granddaughters more actively. I can hope 😃

I am sorry the person you know found no answers. Sometimes even the best have no idea how to help. I hope the person keeps trying to find a doctor who may have the answers. If they tell you they cannot help you ask them who might be able to… is my best suggestion.

On the feeding tube.. I had mine in for a little over a year maybe 13-14 months. There are several types of gastric feeding tubes. Some have a button/stoma/flange. and some not.. mine did not. Not sure what they call it. These may be wrong words. Sometimes the correct word just will not hit my mind.

I just had a gastric tube coming out a hole.. the internal end went into what they call the remnant stomach… I had a gastric bypass and the other part of the stomach is called the pouch. That is where my food goes now. With you it will be your stomach. There will be a balloon between the stomach and skin.. meat layer .. to hold the tube in place. You have to keep the external area around the tube clean. Around the tube when it got irritated is only time it hurt me. They told me to use rubbing alcohol to clean around the tube. I then took a small piece of gauze pad and cut a slit in it so I could place it around the tube. I taped it in place with tape that is easy on the skin.. can't think of name brand of it right now. My skin still got irritated around the tube. They said I could put some antibiotic ointment around the hole, but not on the edge of the hole. Yes, uncomfortable. The formula is smelly. The gauze will catch any leakage.. which I had very little. I changed the gauze twice a day. I am attaching a couple of photos to show my bag. Sorry.. I never took a photo of the tube going into me. On one side of the bag is water and the other is the formula. when full it weighed probably around 3lbs.. which is a lot when you are weak. I could not carry it to start with.. my poor hubby was my pack mule. It comes with a pole .. much like a IV pole for when you are sitting. I found it awkward to walk with the pole. Most of the time I put the bag on a table or chair. The pole was mostly used to hold the bag when my husband prepared everything.

Some people have a formula that they put directly into the tube with a syringe. Mine was a constant feed. My husband did all the figuring on the rate .. which takes some figuring as you are weaning off onto food. I had to maintain my weight for two months without using the feeding tube before they removed the tube. The tube kept me around 140lbs. That is what they wanted me to stay at.. just in case I started losing again. While taking care of my mom I dropped to 117lbs. The Mayo doctor said if you do not gain weight you will need to go back on the tube. My blood pressure was making me feel awful because it was low. My family doctor told me he wanted me to eat salty food and to eat, eat, eat.. so I did and I am back up to 1401bs. I honest feel better between 130-138lb. So if I could lose a little I would feel better. Being able to walk better should help 😃.

If you do have to have a feeding tube someone will tell you how to use it. With me the company rep came to my hospital room. Unfortunately my room was very busy.. I had no idea what she was telling my husband and the doctor was trying to tell (dilaudid medicated) me instructions and hubby trying to listen to two people at a time. Hubby should have ask the rep to wait until after the doctor finished talking.. lesson learned. Hubby was so tired.

Anyway we had everything to get us started.. they said a nurse would come out to set it up.. the company the nurse was with called and said it would be a few days before they could come. Of course I couldn't wait on them for days. I told hubby we can do this together. The bag shows how to wind the tubings around.. The rep had given hubby a card and he called her and she helped on setting up the rate and such. The nurse came twice and took my temp and blood pressure and asked how much I weighed. Hubby had bought a scale to keep up with my weight… this is all at the campground. I could not leave area until my six week checkup. At my two week check up I told the surgeon I did not need the nurse. I can keep up with my temperature, weight and blood pressure. So he had her dismissed. UPS delivered my formula to the campground. We had enough notice to change delivery to home address.

After I was off the feeding tube.. which feels weird coming out. The machine went back to the company. I had formula and bags leftover. I donated them to Easter Seals and a 6 year old got the formula and an elderly lady got the bags.