PEG tube scheduled

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Lavender Lady

Distinguished member
Joined
Jul 6, 2010
Messages
445
Reason
PALS
Diagnosis
08/2010
Country
US
State
WA
City
Lake Stevens
I have a surgery date for feeding tube. It is december 6th. I am a bit nervous about this, not the actual surgery but about the tube. I am a large woman and it's like one more thing to make me feel worse about my looks. Now I will have tubes hanging out of my body. Yuk! Sorry guys but this disease sucks and tonight I am not very accepting of it. I just wish I could wake up tomorrow and it would be gone like some bad dream. Please Lord take this cup from me. Let not my will but your will be done in me.
 
Dearest Rox,

We are who we are inside. I can say that you are a beautiful woman, dear heart, and mean it with no qualifiers. I also believe that this tubing won't be obvious to others, anyway. The bodily changes we're getting are sort of a fast forward, as the muscles disappear and leave us in an old, sagging shape. Initially, it was a shock to me. When Phil made it obvious that it didn't cause him to run screaming, it sort of "magically" made no more difference. Sending you a hug and praying for you to feel acceptance about what you cannot change.... peace to you.
Love,
Ann
 
Thank you Ann. Some days I am more accepting then others. I have a wonderful supportive husband who will love me through this, it's just the thought1

Blessings,
 
I know, Rox. It isn't easy.
 
Rox, please know that having a peg tube is not that bad. Sure, no one would want one but they are so helpful and don't have to be obvious.

None of us are the same people that we were before ALS, I think we are better. Better not in our bodies but better in what matters, our spirits.

Thinking of you and sending strength
Barry
 
Rox, I am also a plus sized woman. When I look at myself in the mirror from my wheelchair I think "I look like a pat of butter melting!" Barry is right, no one looks the same physically anyway after ALS. This disease, tho', comes also with so many gifts. We are allowed the time to mend relationships, or strengthen them. Ah, and the kindness of strangers that we see. We no longer have to do chores.

I urge you to trust your husband, who hurts when you doubt yourself, and throw all those silly earthly yardsticks away. This is your time to be loved. Your time to be cared for. We are getting closer to God every day. You are in my prayers.
 
I feel bad about my appearance too. I was super fit before ALS and now I have a real pot belly. OTOH I've been enjoying eating all my favorite foods. Now that is coming to an end, I too will be getting a PEG in a few weeks. At least it will put an end to coughing and choking on food. I have a tiny tube in my chest already, the central IV line for the ceftriaxone clinical trial. So this will be just one more. We can be tube buddies Rox!
 
Hal are you on the ceftriaxone now and if so, do you notice anything positive?
Laurel
 
Hi Laurel, no, I haven't noticed anything from the cef. It's only been a month though. Our clinic is 100 miles away so it was a lot of stressful and tiring travel for weekly checkups that first month, not to mention the surgery. I think that stress set me back some. From here on it is only monthly visits so it should be easier.
 
Hal thanks for getting back to me. It will be a fairer test now that you aren't over extending yourself. It seems that people trying the drug have had some success. I am rooting for you. I do think they will find a bacterial trigger is one factor in developing ALS.
Laurel
 
Barry, Pim and Hal, Tube buddies we will be and better for it. i will let my husband love on me and help me all the way. Barry I am taking time with family and freinds that I never would have otherwise well not to this extent anyway and i have drawn closer to my maker. i have lots of help around the house and it is such a blessing. It is hard adjusting to the changes I am going through but I am so grateful for all of you who understand the best. Love to all,
 
My husband got his G tube this past thursday and is doing well with it. He was having head to toe spasms prior to surgery and so he had stomach spasms after the placement but they are now subsiding and just feels like a torn muscle. Sore but tolerable. He also doesn't do too well with pain of any kind and he seems like its lots better today. they now have him getting contiuouse feeding through it to ensure he doesn't get "re-feeding syndrome" since his body is malnurished from not being able to eat properly. Hopefully we get to go home in a couple of days. He's having a hard time adjusting to the reality of everything he has been told was going to happen with this disease and now its becoming more of a reality so he is a little more depressed but we will continue on our journey and keep things going for our 2 small children as long as God allows. I hope you do well with your tube placement too.

Amber
 
O Rox, it is a tough journey, and i wish I could make it all go away for you, and the rest of us! But you have the right attitude about just letting yourself be loved, unconditionally. Isnt that what we all really want? Its not what we can do, its who we are and if the 2 get mixed up, we can make ourselves really miserable. But yes, it is scary, and I understand totally about the body stuff. Time to let go of that too, huh? Where are you having the tube put in? I will be praying for you big time on Dec. 6th! Let me know the time, and I will go to my church and be with you in spirit thru prayer. love you
 
hiya, i will be thinking of you. i scheduled mine for dec 9th - tummy buddies forever!
 
Tomorrow is surgey day. I am a bit nervous and it is just one more step on this journey. I have fallen 3 times this week. I am sore but not hurt badly thank God! I will update soon.
 
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