I have not posted in awhile as I have been going through so many heath issues lately. Had yet another kidney stone surgery to both kidneys on Feb 16th. This is the 6th stone surgery in 13 months. Adding to the woes I have severe osteoporosis and have had 7 spine compression fractures in the past. It all hit me at once the last week of March.

I went to the doctor office on March 30th getting in via wheelchair pushed by my husband. From there I was sent to the hospital by ambulance. I was diagnosed with a very severe kidney infection, pneumonia, and a new back fracture. Trust me it is "send you to the floor" pain trying to cough due to the pneumonia with a back fracture. I could not even breathe deep, talk loud or spit. I stayed there for five days with a full IV pole as my shadow.

I use my gtube for total nutrition but it was a nightmare getting the nutrition and hydration I needed. The hospital would not support my Real Food Blend packages and cans of 2Cal mixed together brought from home. They would not let me keep it in their refrigerator or even let me warm it in their microwave. After being in the ER bed for 30 hours waiting for an open room they sent in a registered dietitian to see what I needed. What a joke that was as she was clueless.

I told her I needed to keep the formula cold then heat it before use. She stated she would check with her supervisor as to what to do and get back to me. I never saw her again ! My husband mixed my formula at home, brought it to the hospital in five 10 ounce baby bottles each day and set me up with a plastic basin filled with ice to keep it cold. He also brought me a baby bottle warmer to heat it up. Which had to be ok'ed to use by the maintenance department by the way. Don't laugh, it worked ! So much for concern over the patients nutrition. No one ever even asked anymore about what I was eating or how I was doing it. They would bring me more ice when I asked for it thank goodness. I had to take matters in my own hands. I am down to 82 pounds and just can not afford to go without eating. Ok that problem dealt with and handled. But wanted to let those tube fed people here to be aware if you are hospitalized while using a feeding tube to sometimes expect problems. I understand some hospitals are great with their support others not at all.

On top of all this I am literally about go crazy with trismus. My throat and tongue gets so dry I can not even move my tongue to swallow a sip of water. It feels as though my esophagus is going to tear several times a day.

I have been taking oxycodine 1 and 1/2 teaspoons every 6 hours through my gtube for almost two years. I have never once upped or abused it and do fairly well on that dose. My family practice doctor asked me to set up an appointment at a pain clinic as she is moving out of state in May and I need to have someone else monitor this medication. So, on April 18th I went in for the appt. That was the worst experience I have ever had in my life. The doctor there has the attitude every one is a drug seeker and scum. I had copies of two years of medical records including the cancer care, surgeries, x-rays and CT scans. I have never dealt with a more rude individual. She said I was taking to much and she would not "tolerate" it. Of course I left there crying my eyes out and did feel like scum.

My hubby went back to the office alone the next morning and confronted her regarding her attitude. I told him they might throw him in jail but he said he thought we would have enough money to bail him out. Thank goodness he went instead of me as he is nice and quiet and handles things so well.

So was extremely nice "butter would not melt in her mouth" Saying she made a mistake as to the dose I was taking since it was liquid (put through the gtube) and not pills. She miscalculated, oops, sorry. Anyway she apologized and said she would like for me to try using Butran patches for the pain as well as a smaller dose of oxycodine if needed. I plan to try the first patch on Monday. Does anyone here have experience with the patches ? I am so afraid to try some new wicked drug.

Im so sorry to read of your recent problems!!! To me, hospitals are not training the staff who works hands on with patients enough about patients who have special needs regarding their eating, or using a feeding tube. Patients unfortunately know far more than medical professionals about these things. I found out the hard way (just like you) about the lack of feeding tube knowledge during my 9 day hospitalization in Jan. I was without any formula for the first 5 or 6 days and that was with me asking about it every time anyone came into my room for days. Even after asking about it least 8 times a day I got nowhere. The nutritionist dropped the ball, my info sat in their computer system "on hold". Meanwhile I never would get any better if I had no nutrition, I was getting sicker by the day. I finally contacted the nutritionist Ive worked with for 10 years who works at another branch of my hospital. She immediately contacted the supervisor where I was. I had my formula within a couple hours of making that phone call. I can only imagine what would have happened if I brought my own from home. It would have been even longer before I had any nutrition.

I also had problems with the pain meds Ive been on for most of the past 10 years. Its horrible when medical professionals do not listen to their patients. They simply form their own opinion and ignore what the patient says. I hope you are able to work with the pain management physician after your husband had a chat with her. Its crucial to your health your pain is kept under control. Im hoping the pain management professional understands your situation and will help you.

I have heard of the patch you mentioned. Im more familiar with the fentanyl patch but Im going to assume this kind is similar in you must be careful how its handled. With the fentanyl patch you must never fold, bend, tear, rip, cut or otherwise compromise the patch or it could lead to all the medicine being released too quickly. Also no long hot showers or baths too. I think the Butran patch is longer lasting so it may take longer until it kicks in. One thing that Ive learned is when using a patch it helps to keep your pain levels more stable so using the liquid oxycodone or whatever one you have doesnt leave you without any help between doses. With pain meds alone, you will find you have times where your pain is not alleviated until you take the next dose and your pain can get so much worse. But the patch helps to make it not as bad or as intense pain when the liquid meds wear off. After about 2 weeks you will notice how easy it is using a patch with pain meds as a back up. The most important thing is that you are able to keep your pain controlled enough so it does not impact your life so significantly that you are pretty much laying on the couch in agony all day.

Best wishes with everything!!!

As a caregiver I'm saddened to read this; as a retired nurse I'm appalled. Some facilities have patient advocates. Has anyone found one to be helpful? The energy required to stay on top of things is frustrating and exhausting! I remember a time when RNs listened closely to patient's concerns and had time to coordinate care across departments. Sadly, that often is no longer the case.

I dealt with a horrible incident during my husband's hospital out-patient PEG tube replacement that did not go as planned. He was in a weakened condition from rad & chemo tx and the situation became complicated very quickly. His bed was scheduled for the next patient/next procedure and they did not want to provide follow-up care - pain meds, nutrition, etc. He asked me to please just get him out...I was able to do that because I had resources to fall back on, but it was very frightening. GI answered calls with recommendation for ER, the hospital was the problem not the solution! Finally, I threatened to show up at GI office in 10 min with sick, vomiting, husband unless someone called back to discuss situation. PA at GI office called back, straightened out immediate issues on phone, and made early AM appt for next day.

After that incident, I spoke up to all medical personnel that we dealt about how poorly this was handled. I have found the safest place is with the cancer center team. They were fabulous, knowledgeable and kind. I would advise involving them, if at all possible, for any procedures. PEG tube problems are referred to GI office/MD that inserted the tube. They do not seem interested in follow-up care. I have posted about this previously. Knowledgeable dental follow-up for complications is also difficult. I think both situations are a disgrace. I continue to try to bring attention to this in my medical community.