posted
Hi everyone...Well, I had a long talk with my fiance a little while ago and he begged me to go back on the TPN for a little bit. He is worried because I just cannot eat much, and he is worried about my weight loss. He started crying, telling me that he cannot deal with the prospect of losing me.
I am doing this for him. I am so stubborn that if it were not for him, I would just refuse under any circumstances. But I love my fiance so much and want a future with him so much that I am willing to do the thing that I hate the most.
I called my LLMD and we are going to resume feedings next week for at least a few weeks. I hate the world right now. I really hope that this is only temporary. I do not wanna be a bride who is fed through an IV in her arm. UGH.
Just wanted to give an update. Thanks. Jess.
Posts: 870 | From ct | Registered: Nov 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I'm glad you are takikng this step and, in kindness, feel the need to add that
You have to do this for yourself. Not for anyone else.
Forget the bridal image you have in your mind (either way) as the inside of your body is what needs all your attention right now.
It's okay to feel miserable about it but I hope you will feel good about your decision to do what it takes to live.
There's much that can be done with fashion to cover an arm. Not much that can else besides proactive nutrition that can save your life at this point (without nutrition, your body can't fight lyme).
And it's at that point now. This is your life, not about your wedding. It's about the health of your body.
Plan your life, not (just) a wedding event that will be over in an hour or two.
Plan a life, not (just) a marriage. You have to have the first before the second.
Make your decisions for your own sake, it's a huge weight to put on another person to make THEM solely responsible for your choice to live.
I know you may not feel like being strong right now but strength comes in many ways and it will help you from the inside out when you grab ahold of it for yourself.
I know this is not fun. Still, I hope you can find hope in your positive choice to start back with nutrition, however your body can obtain it.
Nutrition gives you life. Gotta have it.
I'm sorry that the work of that nutritionist apparently has not been of help to you. Have you been able to connect in person? I'll post that again in case it's not handy:
Living (Well!) with Gastroparesis: Answers, Advice, Tips & Recipes for a Healthier, Happier Life
December 2011 - About the Author:
. . . currently the only Certified Health Counselor specializing in gastroparesis management and one of very few health professionals with both personal and professional experience with the condition. . . .
posted
Judie-yes, he cares about me like no one ever has. He loves me truly and unconditionally.
I am so sorry about what yr ex fiance did to you. Anyone that abandons someone they purport to love when they are ill and at their lowest moments is a terribly insensitive and selfish person, IMO.
I appreciate the kind words and encouragement about it being temporary so much. I really do hope so. Its so disheartening to not be able to just do something as basic as eat like a normal human being.
I told my fiance earlier that I feel like a freak and he told me, "You aren't allowed to speak like that about the woman I love." ..He really is a keeper. Thanks again. Jess
Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
I totally agree with your fiance...and he is certainly a keeper!
Remember, your beauty comes from within...don't focus on the outside so much to the detriment of what's inside.
So, so glad you are going to be getting more TPN - please look at this as part of your treatment and not something to be hated...it is a good thing for your body...something your body desperately needs.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Prayers being sent your way. Your fiance sounds like a gem and a wonderful support for you right now. Get well soon!
Posts: 2386 | From New England | Registered: Aug 2011
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posted
Cozy, Dp and Daynise-thanks so much for the well wishes and support. It means so much.
And I just wanna give a special thanks to you, Razzle. You have helped me on this issue more than anyone else on this board, and you have been a constant and unwavering source of support for me. It is appreciated more than I can ever properly express.
And yes, my fiance is a total keeper. It took me 32 years to find a love like this, and I am over the moon happy about it. I have never had a man love me so unconditionally. I really am struggling with this TPN stuff, but I am going to do it.
Thanks again so much. Jess.
Posts: 870 | From ct | Registered: Nov 2012
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posted
You should be grateful that you have an alternative to dying. Seriously. I hope that is not too blunt!! Be grateful it is keeping you alive so you can hug your fiance again and again.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
Jess,
Do you know what exactly is keeping you from being able to eat normally. Is it gastroparesis?
Have you ever had an endoscopy or colonoscopy. Have you been evaluated for gastritis and/or h. pylori?
Do you have a good GI doctor?
Posts: 2541 | From Northeast | Registered: Jan 2008
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posted
Thanks Lymetoo. To be able to hug him again and again I will(somewhat ) gladly go through any pain or annoyance. Jess.
Posts: 870 | From ct | Registered: Nov 2012
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posted
Tickled-it is gastroparesis, colitis and a few other assorted goodies. I have had 12 upper endoscopies and 7 colonscopies. I have had h pylori in the past, as well as severe gastritis. It is a JOY to be me oyyy lol. Jess.
Posts: 870 | From ct | Registered: Nov 2012
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Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
Yes I have taken Flagyl..horrible drug for me.
And Kudzu, thanks so much for the support always. You are so kind to me, truly. xo Jess
Posts: 870 | From ct | Registered: Nov 2012
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
I have been sick for many years and stomach problems have always been a huge part of it for me. I had a couple endoscopies and colonoscopies and they revealed gastritis but my GI was horrible and didn't offer anything. Next GI same thing. Said take Prilosec for life. Neither tested for H. Pylori.
I finally did Metmetrix testing with my current LLMD and it revealed H. Pylori. I did 2 Prev-Pacs for it and got a little better temporarily only to backslide again. He said there was no good way to tell if it's gone for sure.
This past fall I got C Diff after taking Clindamycin for a dental infection and had to take Flagyl for the C Diff. That was 3 mos. ago and I felt better than I had in a very long time after the Flagyl but slowly I felt symptoms return and now gastritis is flaring again but that's the longest stretch I had w/out stomach issues.
I think I still have the H. Pylori and I don't feel testing is reliable and I will probably be doing another course of Flagyl but much longer this time. I think the Flagyl hit the H. Pylori too and I really hadn't done any Flagyl in all those years. Thinking H. Pylori became quickly resistant to all the other abx I've taken throughout the years.
No pun intended but my gut tells me maybe something similar may be at play with you. It stinks however that Flagyl isn't a good drug for you. I hope I tolerate it ok this time around.
Posts: 2541 | From Northeast | Registered: Jan 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Along with other issues, h.Pylori could be a huge matter. It requires a combination of medicines under very specific dosing. You may want to revisit that.
tickled has some excellent points about that.
Gluten may also be a huge connection here. I know you are not ready to address that and have said so recently. Still, if you go gluten-free for just two or three months, you might be pleasantly surprised.
It can't hurt, it's tricky at first but flavor and food is still delicious, and it could help so much. It could be the life saving piece of the puzzle.
If you do, though, be sure to Google:
HIDDEN SOURCES OF GLUTEN -
Posts: 48021 | From Tree House | Registered: Jul 2007
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tickled1
Frequent Contributor (1K+ posts)
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posted
Again, those Amy's mac and cheez' that contain coconut oil really helped sooth my stomach and I believe it is the coconut oil in them that helped and they are gluten free.
I also recommend D lactate free probiotics and maybe aloe juice or gel to sooth the GI and fish oil.
Posts: 2541 | From Northeast | Registered: Jan 2008
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posted
Thanks tickled....I used to eat the Amys a lot. I just haven't felt like eating anything lately. The other day I ate a smoothie for breakfast, some gluten free toast with peanut butter for lunch and an apple for dinner...not good . Jess.
Posts: 870 | From ct | Registered: Nov 2012
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I couldn't say it any better. Many people w/o options to save them would do anything for a chance!
quote:Originally posted by Lymetoo: You should be grateful that you have an alternative to dying. Seriously. I hope that is not too blunt!! Be grateful it is keeping you alive so you can hug your fiance again and again.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
Please revisit the possibiltiy of H. Pylori. It took me a long time to figure out what a problem it is for me. I've been reading about it and apparently it is incredibly difficult to eradicate. Wishing you the best Jess.
Posts: 2541 | From Northeast | Registered: Jan 2008
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
Oh, and when my stomach is acting up the Amy's Mac and Cheez (gluten, soy, and dairy free) are one of the very few things that agree with me.
Coconut oil is anti-bacterial, anti-viral and anti-inflammatory so I think that's why.
Ok, I'll shut up now. LOL
Feel Better!!!!!!!!!!!!!!!
Posts: 2541 | From Northeast | Registered: Jan 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Ditto to tickled1, re: h.Pylori - "it is incredibly difficult to eradicate" (end quote)
As far as feeling bad the day you ate some gluten-free bread, the fact that it was gluten free is likely not the reason you felt ill that day.
Avoiding gluten for one day is not going to make anyone feel ill. However with complicated cases, it can take a month or two being totally free of even hidden traces of gluten to see if there are benefits.
When so, the benefits are often life-saving. Gluten can cause death, really, in so many different ways even aside from the GI tract.
It's just worth serious consideration since it could be such a strong winning number as you try to find the full combiniation of winning numbers to move ahead. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
keebler, oh I know all about gluten free. I was gluten free entirely for months and it had no impact on my symptoms sadly. I have not eaten gluten again in the past week...mainly because I have not eaten much of anything in the past week . Thanks. Jess
Posts: 870 | From ct | Registered: Nov 2012
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
quote:Originally posted by Lymetoo: You should be grateful that you have an alternative to dying. Seriously. I hope that is not too blunt!! Be grateful it is keeping you alive so you can hug your fiance again and again.
Very well said! There are so many less fortunate.
Posts: 1748 | From United States | Registered: Dec 2011
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
Didn't someone on here get relief from several years of constant nausea after having gallbladder removed? Do you still have your gallbladder?
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![[Smile]](smile.gif)
..He really is a keeper. Thanks again. Jess![[spinning smile]](graemlins/spinsmile.gif)
- please look at this as part of your treatment and not something to be hated...it is a good thing for your body...something your body desperately needs.![[group hug]](graemlins/grouphug.gif)
![[Frown]](frown.gif)
. Jess.
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