Nicole Update

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NicolesMom
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Nicole Update

Post by NicolesMom »

Hi Everyone and welcome to our new members!

I am new to the board myself, though not the patient with LC. My daughter who is 25 years old was diagnosed about 2 months ago and has been having a hard time accepting that she has LC as well as adjusting to life with it.

Nicole continues to suffer with bouts of D and has pretty much has had constant abdominal pain that gets little relief.

The acute symptoms have pretty much calmed down though she still suffers from the pain and D. Recently she doubled up on her Bentyl and that has helped the pain be more tolerable. She continues on her Asacol. She is often tired and says that after a bout of D her "guts just hurt," which then makes her not want to eat for a while after, sometimes waiting until the next day to eat again.

Slowly, she is starting to discover what she can and cannot eat. Like many of you it is a discovery to determine what sets off her D or is okay to eat. I have mentioned the gluten free diet, but she is still not ready to go there yet!

This disease seems very mysterious and a challenge for all who are dealing with it and living with it all of the time.

Thank-you for your continued kind words and support. As her Mom I feel helpless at times. It is a lot to understand and even though she is a patient in a large Gastro group, the doctors do not seem to know a lot about the disease.

But we are hanging in there, taking it one day at a time.

:smile:
One thing I have learned about having children, they never stop needing you and you never stop worrying about them!
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tex
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Post by tex »

It may help if she keeps a diary listing everything she eats, (and the times), along with how she feels, and the schedule and type of BMs that she is having. A few members fondly refer to it as a "Winning the Poo" Diary. :lol: It can show patterns that we can sometimes detect, when we review the data, that can help us to recognize problems in our diet. It usually won't help to pinpoint gluten-sensitivity, because of the relatively long half-life of gluten antibodies, but it can certainly help to spot problems due to dairy products, soy, fiber, sugars, etc.

Thanks for the update.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
ant
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Post by ant »

If you or your daughter have an Apple computer.... I find the "ical" calendar tool very useful for my "Winning the Poo" diary.

I colour code my BMs (yes, I am a totally "potty person" :grin:) ... and I can easily trace back and try and analyze food and reactions for one and a half years.

Green = norman or firm
Purple = firmish
Orange = loose and/or soft
Red = D
Blue.... I use to write in my intake of food, drink and meds
Mauve....I use for the level of other significant reactions like....extent of bloating, gurgling, dizziness etc.

Wishing you and your daughter all the best. It is great to see how much you are doing for her

All best, Ant
JLH
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Post by JLH »

She needs to try going gluten free if she wants to get rid of the D. (There are very few of us that don't have gluten sensitivity.) Also, I believe that Asacol has dairy in it.

http://perskyfarms.com/phpBB2/viewtopic ... light=daaa

I'll try to find the post by Camryn's Mommy and post it.

Have you looked at the EnteroLab site? www.enterolab.com
DISCLAIMER: I am not a doctor and don't play one on TV.

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mbeezie
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Post by mbeezie »

Nicole's Mom,

I agree that having her do Enterolab testing might help to nudge her out of denial. Unfortunately the longer she puts off diet the more symptoms she is likely to develop, not just D.


Ant,
I colour code my BMs
I got my chuckle for the day :goodone:

Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
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MBombardier
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Post by MBombardier »

Ant, I love it! :lol: I am beginning to experience other BM's besides the big D, so the mystery deepens. What an excellent way to code a "Winning the poo" diary!!
Marliss Bombardier

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