Progress! I havent used my PEG for 10 days.

[alfredo]

I’m going to get that sucker yanked out.

I still have issues with certain foods, but I have found that I can drink buttermilk easier than water.

[Solly Mack]

1. Yay! Great news!

I don't envy you the actual removal though. I still remember the agony.

Too stunned by the pain to make words and the noise I made was one I never made before. (or since)

[alfredo]

4. I am willing to endure the pain just for the

ability to sleep on my belly, to hug my wife closely, and not have to be careful of that damn tube.

[Solly Mack]

7. Oh, I know. It is much so better without it.

Still.

[alfredo]

8. Are there any diet restrictions after the procedure?

And do they stitch the hole?

[Solly Mack]

9. None for me. No stitches either but monitor the site.

It closes up on its own - inside and out. Only takes a few days for the outside to close. Inside about the same.

There are the occasional problems after the removal, some serious - keep an eye out for any out of the normal discomfort in the area. You'll be sore for a few days, that's normal. Pain, bulging - things like that.

You'll be left with a scar that will either remind you of a second belly button or a healed bullet wound. Mine looks like a healed bullet wound - puckering but long ago enough to have faded a lot.

Keeping in mind, as always - everyone is different.



I am happy for you.

[alfredo]

10. Right now it is red and a real pain. It looks like I lost some skin.

I clean and dress the area twice a day.

[Solly Mack]

11. I cleaned mine a few times a day.

I seldom kept a dressing on it though. No real drainage of any sort. If it did look crusty I put antibiotic ointment around the entry area but mostly in the early days.

Other than the bulge and changing the way I slept, mine wasn't a big problem. I went from trying to hide it under my clothing to letting it dangle down - I got used to it and didn't care who stared.

[alfredo]

12. I've had drainage from day one. I have to keep dressing on because I have an allergy to the bumper.

[Solly Mack]

13. Bummer. Are you maintaining your weight?

I would gently hold a pillow against my tummy so I could sleep on my side better with the tube and in case I rolled onto my tummy - my preferred sleeping position.

I sort of missed it once it was gone but only because I was so used to it. Treating the area as if the tube was still in place. It took me a few days to not behave as if it was still there.

I felt so guilty about all the food I had left over. Insurance paid for it and I got a 6 months supply from the get-go and only used about 3 months worth. Couldn't return it. Couldn't give it to someone in need - not legally anyway. Total waste when someone in need could have used it.

[alfredo]

14. I initially lost 3lbs, but now I can drink the 2cal and that is good.

I want to drink 2 cans a day to see how well that works. Today i’m Going to have cream cheese and smoked salmon on rosemary crackers. I also found some full fat buttermilk that is 160 cal per 8oz. I think the buttermilk has taught me how to drink the 2cal.

I have a lot of feeding bags. I will take the unopened boxes to the VA. I will drink the 2cal.the syringes will be donated.

BTW, I started at 203 lbs 2-2016, and nw I weigh 168 lbs and it feels great.

[WhiteTara]

2. Congratulations

May your health continue to improve and you enjoy the beauty of Spring! I'm sorry you're sick.

[alfredo]

5. Thanks. Its been a long walk.

[sinkingfeeling]

3. Fantastic! Congrats!

[alfredo]

6. Thanks, I cant wait to have a glass of buttermilk.

[wiley]

15. Good News!

Careful about anything acidic or too hot. Do nectar consistency foods rather than water first though. I used to take well cooked steel cut oats, lots of honey, buttermilk or milk kefir and apples or bananas and blend very smoothly. Add ice to get to right consisitency. Sometime I added a few barely poached eggs in sugar and blended up! Fiber and calories. Avoid cakes, soft breads and anything that can become a paste if you have any swallowing issues. When I could swallow I just could not deal with potatoes or any bread.Too much fat in stuff made me gag. SMALL mouthfuls at first. I assume you are doing the swallowing and preventing Trismus exercises? The first two tubes I had removed would have been easier to deal with had I been instructed to do the exercises before months had gone by. Those muscles are not so easy to recover and trismus is a big problem down the road if you relent.
Good Luck!

[alfredo]

16. I try to keep up with protein and high caloric foods so to maintain wieght.

Breakfast was fried potatoes with rosemary, an egg, and 10oz of full fat buttermilk. Lunch was Avocado toast, then after the waves of ecstasy brought on by some of the creamiest avocados I tube fed some 2Cal hn.

I just found that I can't handle white rice, but can tolerate brown rice. Some meat and soft cheeses work for me. Sour cream has replaced cheddar on Mexican style dishes. Lacto-Ovo seems to be the way for me because I can't handle meat other than some pork and dark meat from Chicken.

Tuesday I will have a barium swallow to see how I have progressed. I haven't been doing my tongue exercises as much as I should.

[wiley]

17. So how are you now?

Still feels like I have a huge gash in the back of my throat. It’s always dry. I got 200 ml syringes though that make feeding so much less a pain. There’s only one huge pill I can’t swallow - putting pills through the tube causes serious acid reflex for me so that’s an improvement. The burns on my skin and especially my neck are still pretty bad but no longer open and bleeding. So that’s god! I make my own tube food still so that’s also good. But they keep telling me it will be months before solid food, and never bread or cookies or firm protein again. Hey I’d settle for fish and risotto and thick soups at this point. I wrap a really long Ace bandage around my waist to sleep and sleeping on my stomach is no problem.

[alfredo]

18. Age defines how long it takes to recover.

The Barium swallow showed I still have issues with swallowing. I got my throat scoped and they found heavy damage from my treatment. I may never be able to free myself from the tube. The damage is a shelf of flesh that acts like a funnel to my voicebox. Stick your tongue out and curl it and you will see what the flesh is like in my throat.

I make a big loaf of whole wheat no knead Dutch oven bread. Today I toasted some and used it to eat some homemade hummus.

Just be patient, keep your spirit up, and be willing to experiment.

Do you have a PEG tube or the low profile style?

[wiley]

19. This site never tells me when people respond

Thanks for your response. If you can eat bread and hummus you’re doing way better than I am. They have me doing ten different exercises and say the scope clearly shows there is no reason other than atrophy I cant swallow. After two years of hearing that I think it’s bullshit. The mucous is incredible. I have a peg tube that doesn’t really bother me. In any case, there is no life I could life that I’m interested in living. My psychiatrist is only concerned that I don’t act out on the butcher surgeon that unnecessarily did this to me. I almost died on the table after the first butchering. It’s really too bad in retrospect they just didn’t let me go. I really should have said no to the radiation.

[alfredo]

20. Hang in there. Recovery is tough and the damage could be permanent.

Still, with brain damage, limited swallowing, Lymphedema, and dry mouth, I still enjoy life.

I was lucky, I got great care at the VA and the Markey Cancer Center. At first they feared they'd have to remove my tongue, but the tumor was all on the surface.

I live for little victories like buttermilk, and Morningstar veggie burgers.