I've only had to see my Homeward nurse a handful of times, so I've been quite fortunate with things in that respect. My nurse was ever such a nice man. The last I heard of him (from my dietician) was that he had had a minor road accident last Christmas, and was off work. I haven't been able to find out how he is. We got off on a good foot as it turned out that he used to tend to my little cousin in Peterborough. When you consider I live in Somerset it makes you realise what a small world it is!!

Anyhoo, after speaking to my new consultant (she is fantastic!), she says she will speak to the dietician, and if my meagre oral intake can be boosted to an acceptable calorific level with Fortisips (urgh!), then it seems I can have this wretched tube out. Woohoo! I was looking forward to doing it myself but my GP insists that I let him do it. I may well ask him if I can deflate it and pull it out under his supervision. It may sound daft, but I would feel so good about ridding my body of it myself!

Hi Ray..........don't you dare try to get that tube out yourself. After two years I just got mine out about a month ago. What the nurse did was cut the tube and wrapped it around her hand and yanked it out. It was like one big suction and hurt like hell for a split second and it was over. I actually said to the nurse will ya hurry up and get it out and she said it is out. Talk about like feeling like a fool.I totally hated having it but they tell me it was my survival. I lost 29 pounds and can't put any weight on, taste buds change from minute and I have no saliva. Every day I try to have a smoothie with whipped cream on top sounds good huh? but that can get tiring. I make lots of cream soups and freeze them but now I have a problem with my tongue burning no matter what I eat. I've come a long way and the two things that get me through is humor and a positive attitude but my patience is wearing thin. I'm going to a dietician on Wendsday so maybe I'll have some ideas about some foods we can try.

Hi Joan

Eeek...sounds like you've been through the works! Isn't it the most mundane chore having to eat when you can't taste it properly? In saying that, I made myself some kedgeree this evening and I ALMOST enjoyed it. It takes the edge off of it though when you have to sup a pint or so of milk to get it down.

The first tube I had was a RIG but it turns out that they have to be replaced after 4-6 months. When I had it replaced, the nurse simply cut the retaining wire, pulled it out and pushed the new one in. It was all over and done with in less than five minutes. The latest tube is held in place on the inside by a balloon containing 5ml of sterile water and on the outside there is a retaining disc. My GP confirmed to me that the removal is as simple as deflating the balloon, pulling the tube out and covering the hole with gauze swabs. The hole will heal up in a very short time, but I have been warned that I may "leak" for a short while.

I wish you well with the dietician and hope that you start gaining the weight you need. I don't want to hear you moan if you put on a couple of pounds too many!!!

Keep up the positive attitude and (especially) the humour. WE'LL GET THERE!

Ray

Hi Big Ray and Joan,
I really do not think its a wise thing for you to remove the tube. Let the doctors remove what they put in.Besides, if this was /is your first peg tube it may not be inflatable type as that comes only after the first gets defunct and Joan would have.
I know its a horrific thing to have but for me, I would not remove my peg even if I got a chance to do so as I have got so used to this alternate lifestyle and imagine if such a miracle does happen, I will have start learning how to eat all over again. As far as the weight problem that Joan mentions, I mantain a ery steady weight of 68 kilos - just the right amount for my hieght - 5.11. I manage to keep my weight DOWN by working out at the gym and running everyday - and to top it all I have had the peg on for EIGHT YEARS - during which period I have no had one solid meal or a sip of water. I guess, its not so wretched after all!!!

My taste buds are totally intact and i use them to the best extent possible - if there is something I would like to "eat" orally like a chocolate form example - I put it into my mouth and after having taken the taste bin it. I have done this with pizzas, burgers and even chinese and Indian dishes.

Anyway, I hope you'll both really get the tubes out fast as they are not the most comfortable thing to have. One more thing - I have a new kind of a peg tube which fits onto my stomach and have to just open the top and put in a tube for use. At other times - I just put a small pc. of plaster over it and not because of anything but to ensure it does not pop out when I am doing my weights.

Take care ( I seem to have lost my sense of humor somewhere along the way!!! )
Ananth