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It's gone!!!! Finally got my PEG removed today!

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Hi guys. Hope you are all doing ok. Haven't been by in a while. I have been doing a little better with my eating. Swallowing is still a challenge but I've not used my peg since July and my weight has been stable. I am still tiny. Like 96 pounds, but I have an actual appetite. I have been able to eat some good stuff. I live on veggie curries, I had my first cheeseburger in a year an a half the other day. Today I had an eggs Benedict of sorts (no muffin no Canadian bacon on a pancake) and actually ate in public. :) I still choke when I eat, and still have the stricture despite being stretched twice, but I am learning to cook around it.

I am happy to report that I am now having some really good days. I am even going to attempt to go to the PA Renaissance Faire. I am excited.

After having that peg tube for 18 months it feels great to get rid of it.

hawk711's picture
hawk711
Posts: 525
Joined: Jan 2010

Sweetblood, you made my day!!! I have been reading your posts here and thought to myself, I hope she gets some better news. Today's the day!!!!! I have a PEG and am 6 months out. When I read that you had yours at 18 months I prayed you'd get it out and get back to the "new normal" that everyone is feeling at your stage. Public eating is a huge step, congratulations, really huge congratulations !!!!!!
Stay positive and be healthy,
All the best,
Steve

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

I did a "whatwhatwhat" when I saw your subject line, Sweetblood. Amazing news. Very good to hear. Hope you keep on making improvement.Wow.

D Lewis's picture
D Lewis
Posts: 1521
Joined: Jan 2010

Sweetblood,

That is really really excellent news! I am so very very happy for you! Welcome, indeed, to the second bellybutton club!

Deb

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Yahoooo... PEG free. So glad you are eating again and have gotten rid of the PEG. Very happy for you Sweets. Are you doing the 180 rolls in bed ? Oh yeah, no tube to stop you rolling over, lie on your tummy !! ;o)

Scam

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Hi Deb and Pam! Nice to meet u Steve. Don't think we have chatted before? Thanks for the well wishes, all.

Omg, Scam! I am going to be able to sleep on my stomach! I think I've forgotten how. Maybe not tonight cause it kinda hurts a bit and feels burny. So awesome, I can sleep the way I used to! Lol. Also I hopefully can break my habit of sleeping with my hand over it. I was always afraid Nizzy would get himself caught up in it and pull it out because he is always stuck to me like Velcro. :)

Fire34
Posts: 350
Joined: Feb 2010

Congratulations I know what it felt like to get mine out also. Didn't have mine half as long as you though. Rolling over in bed was great LOL Again congrats
Wishes & Prayers
Dave

miccmill's picture
miccmill
Posts: 247
Joined: May 2010

This is huge. I know how hard you've worked for this and how patient you've been. Congratulations.

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

You are all you again!!!
Kim

Clearblue
Posts: 188
Joined: Apr 2010

I AM SO HAPPY FOR YOU.

YOU HAVE WORKED SO HARD TO GET TO THIS POINT.

FIGHTING YOUR WAY BACK TO WHERE YOU ARE RIGHT NOW; JUST FANTASTIC!!

Your post on the Michael Douglas string (August 18) was fiercely to the point.

May you go from strength to strength for a long time to come.

Clear

plangdon's picture
plangdon
Posts: 7
Joined: Aug 2010

Way to go Sweet. Bet you can't wait until Thanksgiving!

I get my PEG put in this Monday. If there's any advice out there on what to expect, it would be appreciated.

Thanks, Pat

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Don't stop swallowing. As painful as it might be or become, make sure you are passing something down your esophagus every day. Do this to avoid a stricture. You do not want a stricture.

Best,

Mick

Skiffin16's picture
Skiffin16
Posts: 8057
Joined: Sep 2009

Congrats Sweet....moving forward is always a good thing.

Best,
John

Hondo's picture
Hondo
Posts: 5643
Joined: Apr 2009

It is always good to hear from you and to hear you are doing better. Getting the PEG removed is just another part of the on going healing process of a survivor, all 96 pounds.

Take care and God bless and be with you.
Hondo

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Now you have a bullet wound like mine. Awesome news Sweet, so happy you are improving.

Best,
Steve

rozaroo
Posts: 667
Joined: Apr 2010

Super good to hear how well you are doing! I especially love hearing that you could down a whole burger. I can hardly wait for that one lol! Also you are eating in public & we can all relate to that challenge. I spend so much time on the net looking at menu's ahead of time, trying to plan my meal etc & seeing what work's for me ahead of time. You have overcome so many challenges & I remember when I first joined this forum & how much I had learned from reading your post's. Thank you for sharing your great new's & for giving us all hope!
Hugg's Roz

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

Congratulations!!! So happy to hear that you finally have the peg removed. I was so happy to know that I could finally sleep on my stomach again - lol - no such luck but only because I had gotten into the habit of sleeping on my side and I find that I still sleep that way ;-) But it's great to know that you can if you want to.

I was down to 98 pounds after treatment and the only way I could gain any weight was to add one or two Ensure Plus to my daily intake. I managed to get up to 104 and can maintain this weight without drinking the Ensure. I'm not crazy about the taste but I told myself it was like a daily medication that I HAD to take.

Good luck with eating regular foods, it sounds like you are already getting a pretty good start in that area and it will get better!!!

My best to you,
Glenna

JUDYV5's picture
JUDYV5
Posts: 392
Joined: Jun 2010

It is such a good feeling not to have the tube hanging there. I feel like I have to eat constantly. I bring my snacks with me when I go out (sporting events). I tell the person at the gate that I had cancer and I need to bring things in with that I know I can eat. I usually pack a couple of ensure, a muffin, fruit cup, etc. The kid looks in the bag and in I go in. Have a great time at the Faire. Congratulations on your membership to the 2nd belly button club.

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Good to 'see' you guys!

I do still drink ensure. I am eating/drinking like 2400 cals a day and still boney. Lol. I don't get it. I did call down to the PA Ren Faire to make sure I can take food in. I know they don't allow it. They said I could, so I hope so. I am prepping my yogurt and bananas and my figs and marscapone. Also have my trusty and ever present BoltHouse Farms drinks.

As far as thanksgiving we'll see. I have been doing my own cooking and eating alone. I don't like to, but I do much better that way. It takes me an hour to eat. Also I cannot talk while I eat. When I'm eating with people they don't seem to remember that. Also, my granmothsr will literally stare in my face and watch me try and eat. I cannot deal with it. It's unerving and stressful to me and then I cannot swallow.

The last time I tried to eat up there when a bunch of family was in it didn't go well. I have two family members who don't know what the heck they are talking about, but feel free to make comments to me. The last time I had enough and he got my full wrath. My cousin, as soon as I walked up there said, "I have a weed wacker with your name on it. Why don't you work and do something constructive. " Huh? This is a greeting? Then he made a couple more stupid comments and he got it. I don't wish bad on people, but just sometimes I wish they could walk in my shoes for a bit before they make comments on what they feel I am capable of doing.

Hello Clearblue. Please pass on my regards to your wife. Speaking of Michael Douglass, he was on the cover of People magazine so I bought it. I sent them a letter. Maybe it will get published, who knows.

Thanks so much for the well wishes and sharing in my joy. Even tho I don't visit everyday, I hope you all know that I think about you guys every day, and you're in my daily prayers.

Greg53's picture
Greg53
Posts: 830
Joined: Apr 2010

After all you've been thru, glad to hear you're improving!

Positive thoughts coming your way!

Greg

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Awesome news Sweet.

Best,

Mick

pattyanny's picture
pattyanny
Posts: 523
Joined: Jul 2009

I am soooo happy for all the progress you have made! You have come so very far, and although you are only 96 lbs - you are a pitbull! I admire your strength and courage, and the removal of the PEG is just awesome! Miss you, and I will be in PA at the end of September!
Love & prayers, Patty ((Hugs))

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Greg, Mick, Patty, thanks! Patty I think I am coming to the island for my highschool reunion. Maybe we can meet? I haven't gotten the invite yet so I don't know details. PM me and lemme know. No pressure. :) I think it's in november. Don't know what they are thinking. Don't they know i have to drive thru the Poconos?! Not fun in winter.

pattyanny's picture
pattyanny
Posts: 523
Joined: Jul 2009

Just let me know when you here about your reunion - it would be great to meet you!
Lol -cannot imagine driving thru the mountains in November. We'll have to wait and see!
Yippee! Patty - 121 lbs :)

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

God bless you, Sweetblood. I remember how happy I was to get rid of that sucker sticking out of my stomach, and I only had it four months.
Boy, what a relief that must be.
Congratulations!

--Jim in Delaware

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

to hear of the news, Sweetblood. You bested me by three months, girl, and know you gotta be very happy to get rid of it. Really is most excellent to hear of this happening.

kcass

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Thank you Jim and Kent. It is a releif. I think it is healing up ok. I was worried because there was some granulation tissue there. It's itchy. :)

Pumakitty's picture
Pumakitty
Posts: 653
Joined: Mar 2010

Sweet,

I am so happy to hear your good news. I am sure it is such a relief.

Kathy

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Thank you, Kathy.

It's healing really good and I even gained a pound this week. I am actually eating a croque-monsieur right now!!!! Never thought lo these 17 months that I would do that again. :)

Signing in at 97lbs and hopefully climbing!

Sweet

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