Ulcerative Colitis Tips


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Grimm Reaper UC…1 Year Med. Free and Counting…Take That

Meet Shelly:

Shelly from Maine…UC lifer…44,diagnosed at 15, symptoms forever, been on and through all meds. and am either intolerant (my prednisone starting dose is 60 mg) or allergic!
BUT…MED. FREE FOR OVER A YEAR (knock on wood, fingers crossed, etc, etc)! :-)
(I actually was nervous to post and jinx it so I waited a few extra days!)

My Colitis Symptoms:

I would say I’m mostly in remission….unless I eat something a little out of my “normal” restricted, mellow, healthy diet.

My Story:

My story I basically posted in previous story-med. free not exactly by choice almost a year ago!

Shellys dogs in Maine

Shelly’s Dogs relaxing up there in Maine

Anyway, I am a uc lifer and as far back as I can remember I have had uc, my first accident I was 5 or 6, stomach aches all the time growing up. I was put on sulfasalazine 2 years before my diagnosis! I don’t really need to tell every last detail, but it is pretty much all the usual routines starting with colonoscopies, sigmoidoscopies-being awake is awful, but I do wake up during my colonoscopies every time usually writhing in pain the preps were awful-that’s an understatement-there’s law suits now foe those fleet phospho soda and don’t forget the enemas, too…and the barium up the butt hold it in test…they compare that to childbirth-well, a memory for a lifetime anyway!
Well, back to colons, I’m still hoping to keep mine…as I’ve said before-and many of you have seen my postings-at 44, I’ve grown pretty attached to my body parts and already gave up my gallbladder for remicade-which did work for 3 great years and got me through a ton of stress and shingles and the gallbladder removal..I just was on a very high dose every 4 weeks and never got to the maintenance dose!
Overall I have been pretty lucky. UC is a curse and a gift. It surely makes you appreciate everything a lot more and I always think of others a lot worse off. So I am thankful, everyday. Perhaps again it is my stubbornness and competitive spirit that makes me continue to fight the UC fight…now I’m doing it looking over my shoulder and I hope pretty soon that Grimm reaper UC feeling gets weaker.
Good health all :-)
Thanks a million Adam for all you do!

Where I’d Like to be in 1 year:

At least as good as here, but always room for improvement! No more residual side effects from humira-the gift that keeps giving!(please note sarcasm :-) and other uc fun fare!

Colitis Medications:

You need…at least one supportive person who loves you even when you can’t make it to a bathroom and will help you get cleaned up! Put up with your prednisone moods and all Med. Side effects, and the unpredictability of UC itself! (Thanks to my partner of 25+years of this :-)
Quality Probiotics are a must (unless you are doing a strict SCD diet, I guesstimate! Based on others’ postings/experiences)-I take the prescription strength vsl #3 DS around 2 sachets~1800 billion bacteria. I have worked up to this amount and figured out what works for ME which is a lot higher than for most probably based on my longevity, etc, less did not help…it is definitely variable.
Omega 3’s-i have a prescription for Lovaza 4 mgs. My GI is great and has been with me since the beginning, but have done the probiotics and lovaza wit my primary care Dr. Who is a D.O.(they treat the whole person…HE recommended the probiotics to me! He is amazing and I have a great team working with me!
Still not sure what I will do if UC flares it’s ugly head although I did manage to get out of a few month flare and Iritis without meds. :-)
Exercise and de-stressing activities-whatever you can manage…don’t know where I’d be without a treadmill-exercise at home with bathroom at your side! I also live on a lake so even when I can’t go out the view is amazing! My dogs-2 terriers!-jack and a rat that make you have to move! Not helpful when Trying to do the enemas which I could never keep in…and A GOOD SENSE OF HUMOR…because most of us have “been” everywhere man…you all know the song! I think it’s our theme song! :-)

 

(this is the first by request comic, alright Shelly, you asked for it, what you think???:) …your’s truly, -Adam

Hey Adam maybe my cartoon can be the Grimm reaper a surgeon chasing after our colons with meds. And surgical tools!

written by Shelly from Maine

submitted in the colitis venting area




Medication free

11 Responses to Grimm Reaper UC…1 Year Med. Free and Counting…Take That

  1. Midwest Dave
    Dave July 25, 2012 at 10:08 pm #

    This was a beautiful read. Thank you for sharing.

    • shelly in maine July 26, 2012 at 5:42 am #

      Thanks Dave…we’ll keep fighting, sharing and supporting each other…we’re all in this together.
      Best and good health, Shelly( in Maine)

  2. shelly in maine July 26, 2012 at 5:28 am #

    Thanks Adam…you Rock! The comic is awesome. :-)
    Thanks for all you do and continue to do…the site and you are amazing & your spirit is contagious. I know UC is a lifetime war, but if we keep winning the battles…..
    Goood health, Shelly in Maine.

    • Dede Cummings December 28, 2012 at 6:46 am #

      Hi Shelly, I agree! Adam rocks, and I am soooo jealous you got a comic! You are so brave, and an inspiration! Everyone on this site is. Wishing you all a happy and healthy new year!

      • shelly in maine December 28, 2012 at 1:28 pm #

        :-) support, visualization, hope, will, tenacity, stubbornness, luck(good!) :-)

  3. Bev July 26, 2012 at 1:51 pm #

    YIPPPPEEEE Shelly!!

    I SO am with you girl! I am in remission now for about 6 months!! A good probitioc, and L-glutamine, as well as astaxanthin!!

    No more drugs for me either! Ever. I mean it too. I remember just how bad I felt on them. So sick and weird.

    I could not be more pleased for you, my friend. You deserve this! We all deserve this!!

    Bev:):):)

    • shelly in maine July 26, 2012 at 4:52 pm #

      Thanks Bev,
      Congrats to you, too! I actually tried an herbal Med. recently from my chiropractor called Zen Ren Huo Ming Yin, but my body I guess was not ready or maybe didn’t need it yet. I think basically it is the Chinese equivalent to l-glutamine. Anyway, even over a year later my body still reacts weird to stuff from the humira-nervous system, heart, etc…crazy. it did stop the bleeding though…tough prices to pay for trying to get our bodies back to “normal”! I have battle scars from every Med.
      Anyway, I will try more natural remedies again. My Dr. The D.O. recommended to try things when I was actually feeling better to be able to tolerate any side effects! Interesting advice. He also told me about a book that many Med students read called House of god…interesting satire of medical field…I read much about it and one of the interesting things my do said to me was “to do as much nothing as possible”-anther interesting comment by him!
      Thanks and best and good health to you…keep spreading the word! Shelly :-)

    • Ann July 27, 2012 at 4:52 pm #

      bev,
      Do you have any cramping or urgency at all? How soon do you start to realize the effect of l_glutamate and xan…? Have you been able to live off supplements after all these improvement?
      thanks so much for sharing!

      • Bev July 29, 2012 at 8:53 am #

        Hi Ann…

        Sorry for the delayed reply! Summer is so busy…

        I have NO cramping, urgency, or symptoms of ANY KIND at all!

        It only took a few DAYS for the L-glutamine and/or astaxanthin to work. The bleeding was completely gone within days. I’m not sure which of the two did the trick, but I’ll keep taking both!!

        Cheers:)

  4. Bev July 26, 2012 at 1:52 pm #

    Great cartoon Adam!!

    You the man, man!

  5. Steve August 23, 2012 at 12:55 pm #

    I had to look you this up Shelly…its nice to names with faces/stories/dogs(I got a darn good chuckle out of the cartoon request), etc. :) I have every intention of doing SCD for about a week before starting the L-glutamine, specifically so I can see watch for negative reactions though I do not expect any(on that note, its time to eat some yogurt :P). On a side note, my pit bull sits just like that with his legs behind him, particularly if he is hot/tired. lol. Crazy to think I’ve had him for 5.5 years already.

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