It has been another interesting few days. I have had the privilege of feeding myself by what is called a peg tube for the past several months. This is a per-cutaneous endoscopic gastrostomy tube. We”ll go with peg tube from here on in. It is a tube inserted through your abdominal wall and directly into the stomach. When I first started the radiation treatment for my cancer one was inserted for me on Feb 2nd 2010 in anticipation that the destruction caused by the radiation would make eating and swallowing normally very difficult. The doctors said most people needed the tube to aid in feeding and it turned out I certainly did. The food is a special liquid diet they prepare for you containing all the essentials for maintaining health and in my case the mixture is hung up in a bag similar to an IV drip but goes through the tube into your stomach where normal digestion takes place just as if you had swallowed the food to get it in there.
That first PEG tube stayed in place through Feb and Mar. and was removed sometime during April when it seemed my mouth was healing enough for me to swallow and eat normally again. Durng the late spring and early summer when my jaw started clamping shut this once again became a problem for feeding myself since I couldn’t get food into my mouth past my teeth in order to eat it. I was reduced to essentially a liquid or very soft diet not because I had any trouble swallowing but because I just couldn’t open my mouth wide enough to get normal food inside and then chew it up.
When the good doctors performed my surgery in August they placed another PEg tube in to assist me in getting enough food in to heal and go on with my life. I can’t remember exactly how long that one lasted but it was only a few weeks. Late August or early Sept I woke up one day to find the tube had fallen out of my stomach. I went to West Lincoln hospital tube in hand literally as I had been told that the channel the tube used going trough to my stomach would become scarred like the hole you get in your ear from pierced earrings and that there was no trouble replacing a tube as long as you did it fairly quickly. If it was left out for a length of time the channel would heal over and close up, again just like the hole left in an ear if you stop using it for rings after a while will close up again.
With the new tube in place I went on through the fall and thought little more about it. It juat becomes the way you get your food. Mix up the stuff, pour it in a bag, hang it on the stand and attach the end of the feeding bag to the tube then sit and watch the news or whatever till it has drained into your stomach. THis continued with the tube in place from Sept till just last week when one of the home care nurses asked how long I had been using that particular tube. On hearing the length of time, about 4 1/2 months she told me they should be replaced every 6 weeks or so.
So we come to the last week. I had a follow up with my surgeon on Jan 12th and pointed out the length of time the tube had been in. He agreed that it should have been replaced and proceeded to do so at the end of the appointment. IF anyone is familiar with a Foley Catheter tube that is actually the piece of equipment they are using for my PEG tube. THe inner end of these tubes have a small balloon built into them that is inflated with saline solution once the tube is in place to keep it from pulling out through the hole. The replacement this time was a matter of a few seconds. After getting a new tube prepared he attached a small syringe to the old tube while I was sitting up in an examination chair similar to a dentists chair. Draining the old saline solution deflates the balloon at the end of the tube and a gentle pull pulls it out of the hole. No Pain little mess and not much drama. THe lubricated end of the new tube is pushed back into the hole and then another syringe of saline used to inflate the balloon inside your stomach.
THis was done Jan 12th and I made a note to talk to my medicos and get another new one at the end of February rather than waiting months to replace it. I needn’t have bothered. Move forward till yesterday at about 18:45 and as I went to rinse out the feed bag after just having my dinner, the tube fell out. The little balloon had ruptured for some reason and it just came out.
No panic, take the tube and head on back to the hospital to get it replaced. The nice er doc heard my tale of woe and got a new tube and had me lie down on a stretcher to insert it. This is when the fun began. Stomach hole refused the entry of the new tube. A bit of poking and pushing ensued and he finally got another tube t put just inside the end of the hole and inflate it to stretch the opening. After this he managed to get the new tube in and inflated and all seemed well. During the struggle however I pointed out to him that just a few days earlier the same procedure had been performed with me in a sitting position and maybe we should try that to see if it worked. I pointed out that it had been a no bother 5 second switch and I thought that maybe in that position the stomach and ab muscles and whatever this thing winds around and through were in their normal position which had made the switch so easy. He assured me that my posture really would’t affect anything like that and in truth we are not here talking abut the war of the worlds just a bit of unpleasant pulling pushing twisting and dilating all in all not more than 20 minutes worth to get the new tube in.
Well last night about eleven pm., about 3 hours after my new tube had been placed I felt something pop inside my belly. I thought it mght have been the balloon on the new tube but really didn’t want to go back in right then so I taped it down 10 ways to sunday to the outside of my belly and tried to go to sleep figuring I’d see to it in the morning. Now I didn’t want to dump a feed through this till I was sure it was alright since I thought I might end up emptying a bucket of food into my abdomen outside my stomach if it wasn’t in proper place. I’m not sure if that’s possible but didn’t want to risk it so Back to the hospital again this morning.
This time the doctor was a woman. We reviewed the last few days and she tested the balloon by trying to inject some more saline into it. THis she did with ease and should not have been able to. Prep the new tube, and she reviewed the notes from the night before. After asking about the need to dilate the opening I again pointed out how easy it had been when I was sitting rather than lying down. Unlike the male doctor she said well why don’t we try that then. Presto Digit, new tube slips in in about 10 seconds. Inflate the balloon. test whether it will stay in place and go home.
Now I hate to generalize from only two examples like this and all generalizations are questionable, but it sure seems that the woman doctor was a bit more open to listening to what I knew about this and my body than just expecting the medical training to let her know all that needs to be known.
You can bet that in a few weeks when the time comes to replace this tube we will be trying it sitting up first no matter who is on the other end trying to push it into my gut.
In the meantime it is now time for a late lunch for me so I’m off to the kitchen to prepare my favorite meal. 400 ml of water mixed with 500ml of Iso Source 1.5 cal meal preparation. Let the party begin.