PEG Tube Insertion June 8, 2006

PEG TUBE INSERTION

(Percutaneous Endoscopic Gastrostomy)

Dated: June 29, 2006

by Peter C Ellis

pcellis2001@rogers.com

MY DECISION

Two months ago, I decided it was best for my health to have a PEG (percutaneous endoscopic gastrostomy) feeding tube installed into my stomach. I told my wife at that time that if I continue to eat orally and aspirate food into my lungs I was just asking for trouble. My decision was based on the risks and complications that could or would develop (as explained to me from my respirologist, physiatrist, speech language pathologist and my GP) if I was to get aspiration pneumonia. The solution became very evident. I just have to stop eating orally permanently, stop the aspiration of food into my lungs and get a PEG tube. This means that I would not eat orally again for thr rest of my life time.

The above medical professionals who have looked after me for last ten years, all collectively, insisted that I had to have a PEG tube now. I resisted their advice for a year but finally two months ago, I agreed and accepted their position. The PEG insertion was done on June 8, 2006 by a gastroenterologist. Three days later it became infected and my surgeon prescribed antibiotics for ten days. The infection has now gone and the hole into my stomach (stoma) has started to heal.

My reasoning for getting a PEG tube was based on the following logic: Owing to the fact that I have chronic obstructive pulmonary disease (COPD) and that my forced expiratory capacity, a year ago, in the first second (FEV1) was 34% of normal. This is complicated by my bronchiectasis. I was told that I would not have much reserve lung capacity to fight pneumonia. In the last ten years, my FEV1 reading has decreased by 2% per year. Today, I expect it to around 32% of normal. I believe when FEV1 is below 25%, one will then require oxygen. On July 19^th., I have an appointment to see my respirologist at the Rehabilitation Centre on Smythe Road.

I have had bronchiectasis for seven years, a disease that is caused by aspiration of foreign particles into one's lungs. Three years ago I had respiratory physiotherapy which taught me lung hygiene and coughing strategies in how to clear my lungs of mucus which I carry out every day.

LIFE STYLE CHANGE

Two and one half weeks later, I have really found out that living with a PEG tube is a huge life style change. It has really curtailed my daily activities as I have to spend four hours a day connected up to my 500 ml feeding bag on the I.V. pole using 400 ml/hr Kangaroo pump. I have four feedings a day, each one lasting one hour where I consume 375 ml of formula or 450 calories. I estimate that I spend another hour in doing preparation work as follows: putting new dressings around the stoma; flushing my PEG tube with water, using a 35 cc syringe, before and after each feeding; filling the feeding bag with formula and priming the feed tube lines with formula; etc.

FORMULA

After three home visits and discussion, my dietitian decided that I will require 2,100 calories a day, based on my present weight of 186 lbs. and height of 6 ft and 1-1/2 ins to sustain myself. Because I was taking a teaspoon of Metamucil with water every night when I was eating orally, my dietitian concluded that I would need fibre in the formula.

My dietitian then recommended Novartis Isosource HN with fibre having 1.2 calories per ml. I have to take six (350 ml) cans (300 cals) of formula each day to make up 1,800 calories. The remaining balance of 300 calories is to be made up from either having two Novaritis thickened juice containers (237 ml) and 160 cals each (nectar consistency), or a pudding and thickened pint of beer. This means that I have to have four feedings a day, each lasting an hour. I find this very time consuming!!

I am not allowed to drink orally any liquid unless it is thickened up to nectar consistency with Novartis thickening powder.

HOME CARE NURSING

For the first two weeks, a home care nurse came to my home daily. Now, she comes only twice a week on mondays and thursdays. They look after all my medical home care needs such as tube feeding supplies, stoma cleaning medical supplies and my well being.

Yesterday, I asked my nurse to order me some 500 ml gravity feed bags because my bulbar polio friend in Toronto who has had a PEG tube for a year now, says that it only takes her ¾ hr. to feed herself 500 ml by gravity feed with only three feedings a day as compared to my four.

My dietitian then agreed that I should try using gravity feed bags. Based on three 500 ml feedings a day, I could expect to save at least one hour in the beginning if I tolerated it. Gradually I would try to lower the feeding time to three quarters of an hour. My time connected up to the I.V pole would then be 2 and ¼ hours as compared to 4 hours, a savings of 1-3/4 hours.

TUBE FEEDING SUPPLIES

Comprise of one I.V. Pole, one Kangaroo Enterable feeding pump rated at 400 ml max per hour, one Kangaroo Pump set easy cap closure 500 ml feeding bag with delivery tubing and twenty five Sterile Softpack 35 cc Catheter Tip Syringes for flushing.

STOMA MEDICAL CLEANING SUPPLIES

Comprise the following: Cotton tip applicators, 2x2 in Topper Drain swabs, surgical tape, gloves, Flex-Trak Anchors, bottle of saline irrigation solution, hydrogen peroxide, etc.

Ontario's Heath and Long-Term Care Program--Assistive Devices Plan (ADP)

The Ontario ADP will cover the cost of an enteral feeding pump only for people who are on continuous feeding for six or more hours a day. I guess I am out of luck!

Ontario's Heath and Long-Term Care Program—NUTRITION PRODUCTS

The Ontario Drug Benefit Plan (ODB) will cover the costs of my expenses for my Isosource HN with fibre 1.2 once I get a prescription for it from my doctor. My dietition has filled out and Ontario Drug Benefit Application form and faxed it to my GP last Monday. Tomorrow I have an appointment with my GP to discuss this further.

THE NEXT DAY

Well, when I saw my GP, she immediately filled out and signed The Ontario Drug Plan Nutrition Products form which I then gave to my pharmacist with a prescription for 240 days for my Isosource HN with fibre 1.2. Instead of paying $ 60.00 for one case of 24 cans I will only pay $ 6.11 for ten cases of 24 cans which is actually worth $ 600.00 without a prescription. My pharmacy will deliver 10 cases to me on Friday afternoon.

TODAY’S TUBE FEEDINGS

I am now on three tube feedings a day taking in 500 mls per feeding in 1hr 20 minutes for each feeding. I like this much better. I will also try using gravity feed bags next week where I hope to reduce each feeding down to one hour. I have now regained 4 pounds and weigh 182 lbs. My nurse is coming only once a week.

AN UNFORTUNATE INCIDENT

Two days ago when I getting out of my car, the external cap or plug which closes the PEG tube to the outside came off and all hell broke loose. All the contents in my stomach came rushing out the tube and soiled my underwear, shorts, socks and shoes. Now I use a paper clip with gauze to clamp the tube. This is part of the learning process. The same thing happened to my bulbar polio friend in Toronto while she was sleeping in bed. My nurse has ordered some gaget that will prevent this from happening again.

JULY the 9th. UPDATE:

I am down to three feedings a day, each taking between 3/4 to 1 hour, using gravity feed bags instead of the Kangaroo feed pump bags.