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