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Just Seeking Happy Thoughts...

FaithInScienceToo

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FaithInScienceToo Contributor
FaithInScienceToo
Posted

Hi, all...

I just finished my new signature...I look at it, and it reminds me of how 'overwhelming' my health issues have been for the last 15 years...

I just realized that I forgot to add the anal fissures and 2 surgeries that followed those...

I sit here afraid to have the colonoscopy and endoscopy done in 3 days....but, when I look at all the crap this 'dis-ease' has put me through...I wonder how I could POSSIBLY fear those tests...I've had colon tests before...with and without barium, etc...

I think, perhaps, I just feel like I am 'at the end of a VERY long battle'...and now it's OK to feel exhausted about it all...even if I feel I 'am winning'...or perhaps I fear I will learn 'more bad news'...and find that I learned about my gluten problems 'too late'...

Oh well...

Just reaching out for support...anything...a poem you may like to share...a prayer (even tho I am agnostic) ...anything that I can read Thursday evening to make me smile and feel peaceful about the tests...

I feel like a little kid who has never been to a doc before...don't know why....just 'tired' of it all, maybe...and fearful...as anyone would be...

THANKS,

LOVE, Gina

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celiac3270 Collaborator
celiac3270
Posted

I can't think of any appropriate prayers (I'm not terribly religious...just spiritual, perhaps, so I don't know many "official prayers"), and don't have any poems. What I can say, though, is that we'll be thinking about you and many of us have been through at least one, in some cases, both of these tests--and we survived. We'll be thinking hard for you on Friday and wishing you the best. Just remember when you go into the tests that you'll have a group from here praying for you or sending positive waves your way. Keep us posted....

KaitiUSA Enthusiast
KaitiUSA
Posted

This is a verse I read that really calms me when I am overwhelmed and afraid...

"Be anxious for nothing, but in everything by prayer and suppication, with thanksgiving, let your requests be made known to God; and the peace of God,which surpasses all understanding, will guard your hearts and minds through Jesus Christ" Philippians 4:6-7

I know that you are agnostic but I want you to know I hope things go well and I will keep you in my prayers. It will all be ok :D

Canadian Karen Community Regular
Canadian Karen
Posted

Hi Gina,

I just wanted to tell you that we are behind you to give you any support we can.

I too was in the same boat as you, thinking the diagnosis had come too late....

I had continuing symptoms (chronic diarrhea, anemia, etc. etc.) for years and the gluten-free diet just wasn't getting it under control. The doctor mentioned to me the possibility of refractory celiac which put me into a panic..... After most people here mentioned that there MUST be somewhere I am getting gluten from, I did an extensive search..... I found out the the Gax-X chewable tablets that I was eating like candy for my gas actually had gluten in them!!! Also, Clamato Juice that I was drinking had gluten in it.

My GI doctor sent me down to a professor who specializes in celiac and after doing a colonoscopy, he sent away the biopsies to a pathologist who made the diagnosis of collagenous colitis. So after a decade of permanent diarrhea, we finally knew the answer why.... I am now being treated with budesonide and have great success with it..... I finally see a light at the end of the tunnel!!!

Just wanted you to know that when it seems totally hopeless, there is still hope. I had myself convinced that I had been diagnosed too late and that it was only a matter of time before the cancer came to claim me..... Now, I feel that I am now back in control of my health and on the right track finally....

Sending you positive and healthy vibes....

Karen

tarnalberry Community Regular
tarnalberry
Posted

Happy thought...

I read over your sig...

And saw that long list of symptoms...

And read "but not any more", or something to that affect, after almost all of them.

If that's not a cause for happiness, I don't know what is! :-) Less pain and discomfort is always a good thing! :-)

Guest BellyTimber
Guest BellyTimber
Posted

Gina,

I feel sorry that I was so grumpy and cross with everyone the other day.

Something I get from your post is what I feel also, though the circumstances are different: it is natural for us to feel a mixture of flatness and worry of a strange new kind, this late in the battle.

I know I have to go the route of no further tests but I don't feel like I know it; I am finalising a letter to my doctor requesting he diagnose celiac disease in all but name so he can write a strong letter for the attention of my employers' doctor and also advise me, acknowledge where I'm at and that there have been complications.

I am finding it difficult to maneuvre these doctors into my plan. Perhaps I have to leave them both in the hands of some thing or one greater than me that knows better and more than me.

This was written by a young person in the light of his suffering, hoping for more independence:

"...with all my haves and have knots I remain a total optimistic person because I have many well wishers who constantly encourage me to achieve my dreams..."

(Tito Rajarshi Mukhopadhyay)

(quoted without permission - moderators, for future reference, do you advise only lines in the public domain be quoted on this board?)

Best wishes for Thursday and Friday and after,

Michael

Guest gillian502
Guest gillian502
Posted

Gina,

Just wanted to ease your mind about the 2 procedures you're about to go through. The endoscopy is so painless and quick one could do it awake if one wanted to...and the colonoscopy isn't nearly as troubling as people had me believe when I had mine done last year. Please don't waste time worrying about it, they are so simple to endure for most people. Even my prep for the colon. was much easier than people I spoke to said it would be. Not worth all the fear and worry I put towards it at the time.

I hope your results turn up a simple answer to your symptoms, and that all is healthy!

Gillian

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luvs2eat Collaborator
luvs2eat
Posted

Please don't be afraid of the tests. The colonoscopy is actually fascinating... I wasn't asleep at all and watched mine, asking the doc questions the whole time. I've not had an endoscopy but when my friend had it done, her doctor asked her which "island" she'd like to go to with her preop drugs. Pick an island and enjoy!!

Reading thru your various diagnoses and ordeals... I guess ya gotta feel good about the many strides and take the set backs as only temporary till a better diagnosis is made.

In any event... you can whine to me anytime you want!!!

plantime Contributor
plantime
Posted

Here is my favorite verse:

"Those who wait on the Lord shall renew their strength; They shall mount up with wings like eagles, They shall run and not be weary, They shall walk and not faint." Isaiah 40:31

To me, it says that God will take care of me and everything will be all right.

FaithInScienceToo Contributor
FaithInScienceToo
Posted
  • Author

Hi, All:

Here I am, just began 'prepping' for tomorrow's procedures...and wanted to read your thoughts...

THANK YOU for your lovely replies...I cannot quantify how much they mean, other than to say that your posts have truly calmed and strengthened me...

...tomorrow seems a lot less scary now...

Your prayers, positive thoughts, shared stories, and the offer to whine anytime...haha...are SO sweet...and accepted with deep appreciation...

I'll post again afterward, as soon as I can, to tell you that I was 'the trooper' that you have helped me be...

MUCH LOVE TO YOU ALL,

Gina

angel-jd1 Community Regular
angel-jd1
Posted

:o AHHHHHHHHHHHHHHHHHHHHHHHHHHH the prep is the WORST part of it. Trust me!! I hope you got yourself some baby wipes (flushable kind). After you get through the prep, it is smooth sailing from there. You will do fine.

-Jessica :rolleyes:

Guest gillian502
Guest gillian502
Posted

My prep was so simple due to the fact that I had a b.m. earlier that day, then barely ate except for jello and applesauce, then did the prep at night. That way there's really nothing to it! Just a tip for ya! lol.

gillian

FaithInScienceToo Contributor
FaithInScienceToo
Posted
  • Author

Dear Net support group:

I am happy to report that I am done with the procedures, and it went well, other than needing a bottle of magnisium sulfate on top of the jug of 'lytes,' due to my throwing up some of the first prep fluids...My boyfriend was so supportive and never complained about our not getting to bed 'on time,' and my needing to get up often during the night...plus my monopolizing the bathroom this morning before leaving for the surgery center.

I was put under a general, fast-acting anesthetic and also given a narcotic pain killer via IV (which is still making me a little groggy, but in a nice way), so I didn't feel a thing.

The doc wrote "normal stomach, ? normal duodenum, and normal colon" on the discharge form. I will now google into the effects of Celiac on the duodenum, so that I will be prepared for the follow-up visit in 2 weeks. Not sure what he saw in there at the site of the duodenum to make him put a question mark next to it, as I did not get to see him pre-discharge, but I will become informed about any possibilities before my visit.

I want to THANK YOU all again, so very much, for your loving and generous support.

It made a HUGE difference in the level of stress I felt last night and this morning to know that others like me are 'out there' and that we care about each other's health and safety...and take the time to make a real differrence in each other's lives...I couldn't possibly go through this so calmly 'all alone'...Thanks for taking away many of my fears...by 'being there,' and sharing your time, wisdom, and love -

I do hope you will all have a beautiful weekend.

I leave in the morning for an overnight car trip to Santa Cruz...The weather is gorgeous around here just now, and it will be so nice to get away...

My love (Paul) and I will be making dinner for his brother and his young niece tomorrow night...I am planning to make a gluten-free crab alfredo penne :-)

It still feels funnny to have to plan meals in advance, but it also feels so good to know that whenever I cook, I am 100% safe...I think I may even be blossoming into a pretty good chef.. it seems to one more positive aspects of this 'dis-ease.'

Wishing you much joy-

With love, Gina

bklyn Enthusiast
bklyn
Posted

Glad to hear that your tests are over - been there, done that. I was so stressed when I was scheduled to a colonoscopy and endoscopy at the same time, I got so sick (nauseated) that I couldn't drink the prep. My GI only did the endoscopy and then about 2 weeks later ( when my stomach settled down) I had the conoloscopy. Enjoy your trip!

mela14 Enthusiast
mela14
Posted

Please let us know how you are doing.

i was worried about you......and thinking I have a lot of the same problems. I am alsoo going through a difficult time so I know how you are feeling. email me if you ever need to vent.

I am curious if you ever found out what the ? was for? Are you still waiting on the biopsy results?

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      High DGP-A with normal IGA

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      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
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      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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