Hi BetterDays,
I was actually just joking about the pizza bit but jokes aside the kind of nourishment I recieve through my dear friend "peggy" is as good as anyone else would get orally. There is almost nothing that I do 'eat' and even though I cannot taste the pureed food, its just the memories that give me the taste. However, I try and avoid any food from outside and would rather have everything cooked in the house - rice, lentils, veggies, deserts - such as jelly, various milkshakes, custards etc. I take a bit of everything turn by turn on a spoon and taste it via my mouth as my taste buds are totally fine. As I cannot swallow, I just twirl it around and bin it. I eat "pringles",chocolates,chew gum and in this case I also go for the pizza and burgers as its not going into my system and it does give a feeling of satisfaction.
However, we come again to the point where each one's body reacts in different ways and there is no denying that. The only problem(s) I have had with my peg is it popping out of the stomach and at times and most it would happen when I was really far from the house or the hospital. The first time it happened I panicked but once the doctor assured me on things - if and when the peg would come out, I would take a couple of handtowels (that I always carry in the car along with a spare peg) to keep the blood from flowing out and then call up my doctor and drive across to meet him. The complete procedure would normally take me anything from two to three hours before I had the new peg in place. Another thing about the peg - I always "cushion" it with thick gauze with Betadine paste spread on the inner side and on the point of insertion. This gives a lot of relief as at times if the peg keeps chaffing against the skin- it can be painful. I change the dressing twice a day.
Regarding flushing etc., I am really not the one persons advise anyone should follow as I never bother to flush it after each time I eat or drink.It gets flushed on its own with the quantity of water I drink and I then also mantain the peg very clean by cleaning it through a shower. With eight years with peggy, I think it has been pretty much okay as I manatin my weight to a decent 68/70 kilos and thats what the doctors want me to mantain. I workout regularly in the gym with weights etc and do a lot of running to remain fit.

Actually, put in a another way - each ones thought process is also different. While one is worried, the other is not. Its a question of how one looks at life.

Take care and say hi to your Dad,
Lots of love,
Ananth

quote:

Originally posted by betterdays:
Hi Ananth,
I really appreciate you taking the time to write. I'm sorry you've been on a tube for so long. Well, we joke about putting gin in Dad's stomach tube, but the truth is he just wants to be "normal" health again in general, so pureeing pizza and putting it through his tube isn't really want he wants. He's afraid to put anything other than his Ensure shakes through his tube, because he doesn't want to dirty or clog the tube. (Yes, he flushes with water, but still...) Do you find tube maintenance a problem? He had a complication with it that hospitalized him for a week, so he's very wary -- and understandably so, I think -- of messing with it. Thanks again for writing and good luck to you.

quote:

Originally posted by ANANTH:
Hi BetterDays,
My name is Ananth. I had cancer and went through the radiation and chemo also. However, it is true that everyone reacts in a different manner and thats a fact one has to accept.
However, the fact at the moment is that your Dad is on Peg feed, which I have been on for the last eight years. I have not had anything orally in all these years and all my food is sent in through my Peg tube. In the first instance - why is he hesitant to be fed through the pegtube? In fact he can mantain his weight and strength the way he wants to if he decides to do so and accepting food through the peg - till such time he can eat. A lot of people on the peg are under the wrong idea that only certain foods should be given (Ensure etc.). This, however, I have found you can give him anything by pureeing it well with milk or water and then straining it. You could even give him a pizza, like I get one once in a way; you can give him a cup of tea, coffee or even a coke. However, it does not mean he is going to get strong on these feeds - you can try soups of his choice, with plenty of vitamins. Fresh Juice, Milkshakes are a great way to put on weight.
You could ask him if he would like to try this and once or if he says yes - there wont be any looking back and he will be well on his way to a great recovery.
You are welcome to ask me anything and I shall try respond to the best of my ability.
Regards,
Ananth

Hello Betterdays

There is much advice in the discussion on
PEG problems and PEGs. You can also search for previous discussions on PEG feeding using the Find button to look up the keyword 'PEG'.

Hope that helps.

Best wishes
Vinod

Hi Ananth,
Thanks for taking time to write again - wow, it's so great that you still work out and run, even with a peg. Is there hope for improvement on the swallowing front? It sounds like, regardless, you have found a system that works. Best wishes for your health.

Hi,
Regarding my eating or drinking orally, that is one thing I will not be able to do in this life time. Though the doctors were contemplating on grafting and creating a new passage, I decided against it. I am already 50 and I do not want to spend anymore time in a hospital ever. I have stopped even going to the hospital for check ups - even when the doctors told me the cancer had reoccured.
My working out and running has always been a passion and it also would keep me fit for any surgery that would be around the corner at any given time and I did not want to be unstable so that the doctors would not be sure as to operate or not. Though the overally workouts and running is becoming a bit tough, I still cope pretty well and enjoy it.

But again - no oral feed ever again and in any case, after eight years I have become so used to my alternate lifestyle on the peg - I feel I may find it difficult to eat again normally. Guess I have become lazy on that score - rather pour the food right in then chewing it and then swallowing it!

I hope your Dad is feeling better. Do give him my regards - even though I know he will have no clue as to who I am!! . Take care and look after yourself.
Lots of love,
Ananth

Hi,
Thanks for writing back. I'm so sorry about your experience. I'm sorry if this is too personal, but can you share what happened that the peg became permanent? Thank you so much for taking the time out of your own situation to help and inform others. It's much appreciated and I wish you success and healing.

quote:

Originally posted by ANANTH:
Hi,
Regarding my eating or drinking orally, that is one thing I will not be able to do in this life time. Though the doctors were contemplating on grafting and creating a new passage, I decided against it. I am already 50 and I do not want to spend anymore time in a hospital ever. I have stopped even going to the hospital for check ups - even when the doctors told me the cancer had reoccured.
My working out and running has always been a passion and it also would keep me fit for any surgery that would be around the corner at any given time and I did not want to be unstable so that the doctors would not be sure as to operate or not. Though the overally workouts and running is becoming a bit tough, I still cope pretty well and enjoy it.

But again - no oral feed ever again and in any case, after eight years I have become so used to my alternate lifestyle on the peg - I feel I may find it difficult to eat again normally. Guess I have become lazy on that score - rather pour the food right in then chewing it and then swallowing it!

I hope your Dad is feeling better. Do give him my regards - even though I know he will have no clue as to who I am!! . Take care and look after yourself.
Lots of love,
Ananth

Hello again
Nice to hear from you again. Nothing ever is too personal when it comes to an issue like this and unless we share our experiences I feel a lot of people will be a pretty unhappy lot.
The overdose of radiation in my case made the walls of the air and food passage extremely weak and thin to a point where at a point they formed a leak linking each other. Normally when this happens (its called a fistula) everything that one swallows goes into the air passage rather down the food one. This would mean if I had to drink water etc - I could die of drowning as all the liquid would go directly into my lungs. As I understand it - fistulas are pretty normal after radiationbut heal by themselves withen nine days.The initial MRI showed just one fistula and the doctors put in a Ryles tube (through the nose) for feeding for those nine days. However even after the 9th/10th and so on nothing seemed to be healing. The doctors then decided to operate and seal the fistulas by using the tissue around the passages.

Everything seemed to be fine - only on emerging from GA - my doctor gave the news that I did not have one fistula but together four of them. There was enough tissue to cover three of them which had been done but the fourth was still open. They decided to insert a peg into my stomach and a ryles tube through my nose. The ryles tube through the nose was not for feeding but with the hope that the tissue would form around the tube and all the fistulas would be closed and I get back to normal eating.

However, this entire idea backfired as the ryles tube created an infection - a fungal infection that began spreading towards my brain. The doctors had no option but to remove it and treat the infection. As all this was happening - my air and food passages closed down totally and I had my tracheostomy in any case. Breathing was not a problem but there was no way I could eat or drink orally. The peg became an intregal part of my life and has been so for the last eight years.

The doctors, as I mentioned, gave me an offer of wanting to reconstruct my food and air passage by grafting skin from some part of my body. However, I was not keen on spending any more time in the confines of a hospital room and being wheeled in and out of the OT. The other point was the grafting - neither the doctors nor I were very sure if my chest would be able to take the strain of a new passage as I had had a number of infections which had left my cheat muscles pretty weak. We also decided that as I had coped for so many years without eating or drinking orally - it would make more sense to remain on the peg. Yes - had I lost weight drastically - it would have been a differnt issue but here I was in top shape feeding through the peg tube. At times I had to reduce my weight on the doctors advise.

I did not depend on any dietician for my health recepies but depended on my wife and mother who made some of the most innovative foods - pureed in such a way - that it would slide easily through the peg. Not once did I have a full box of Ensure - as I hated the stuff. My food has been extremely healthy, full of vitamins ,protiens - found in the form of milkshakes of various kinds, fresh soups made at home with various lentils and vegetables, a lot of fruit pureed and mixed with cream to make it slide through the peg. I drink my water, my cokes, my medicines are all crushed and mixed with water before pouring it down the peg. Just to add up everything -my peg is my my life. Whenever I feel like eating something orally -say a chocolate or an icecream or a pc. of Pizza - I take bites of them chew on the them to get all the taste and then just bin it. This way my taste buds work fine and one feels that one is eating normally.

Coming back to the peg - once the infection began subsiding the doctors decided to remove the tube and not insert anymore. This meant that there was no option but to let the food passage close down totally. The doctor made me keep a temprory stoma button on my tracheostomy with the hope that one day - I cou;ld go for lasers to create new passages. However, I think I have far passed that stage where I used to long to eat orally or feel bad watching others eat. Its now just a way of life - a life that I have adapted to and no longer worry too much if I will ever eat or drink normally.

Wow - thats quite a bring session I have put you through. How is your Dad coping. Do keep in touch as it will be nice to know his progress and if i can be of any help, please do not hesitate to ask -and that is ask anything.

Lots of love,
Ananth

Hi Ananth,
Thanks for sharing your story, although it's an unfortunate one. Thank you also for inquiring about my Dad. He had a couple more bad weeks after I wrote but then he had an upswing and just this past week he's started drinking his Carnation Instant Breakfast shakes by mouth, something he's been unable to do since probably February or so. He said they taste 60% like they should, so that's something. I'm hoping he can upgrade to soups soon, so I can cook for him again. I don't feel very helpful right now. Not that it's about me, but it's hard just doing nothing while someone you love suffers. Thanks for the taking to time to write to us all! You've got a great attitude despite your cirumstances, it's very inspirational. I only hope you get something from here, too, that helps you, rather than the other way around. Best wishes.