20 year old Canadian actor. Diagnosed in February. I’d prefer to keep myself mostly anonymous for privacy reasons, But i will say that i am anxious to hear your thoughts on my little story.
Not many. Which is what I wanted to post about.
Hey guys. So my strange story begins like this;
In February, the day before the superbowl, I was completely healthy ( as far as i know ) with no gastro issues whatsoever. Over the next week to 2 weeks I developed a swath of strange symptoms and pains, such as a gurgly feeling in the guts, bloated feeling, extreme cramping (progressivly worse over time), jelly like bowl movements, and blood. Tons of blood.
This happened out of NOWHERE.
I had a history of mild constipation when i was younger, and has a colonoscopy at 16 for safety measures, and my bowels were spick and span. I have no family history whatsoever of any IBD at all.
After a week of this pain and blood and horrible circumstance, I finally went to the emergency ward and had a zigmoidoscopy (because i had not cleared myself out, i couldn’t have the full scope) and i was diagnosed with ulcerative colitis. I was immediately put on 30 mg of prednisone and my symptoms went away almost overnight (weird right?). I continued to take prednisone until i found a gastroenderologist (pardon my spelling), who has me put on 4 tablets of Pentasa daily.
Its been hard, this entire time to accept that i have a chronic bowel disease. I say this not only from the side of me that wants to believe im Invincible ( :D ) but also because I’ve done heaps of research on it, and it just does not add up. At all. At least in my mind anyway.
I’ve come to understand that colitis strikes in bouts, known as flareups. Now while I’ve come to feel like i have had a few, in all honesty, they havent been at all like they are described by stories i read and by the way my doctors tell me they usually are. There has been times where i would see a small, amount of blood on my stool, no more than a drop at maximum, and times where I’ve felt cramping, but i have never had any increase in bowel movments( i go maybe once i 2 days ) , my stool for the most part is not diarrhea, I’d say 85/10 solid/very soft, and the remainder , actual diarrhea. I have not lost any weight ( which i hear is a big indicator for UC ).
Its now late September. I have not had a flare up even REMOTELY as severe as the original one, and have been doing fine. I’ve recently had a full colonoscopy and was told my bowels look perfect. After further inspection on the biopsy samples (pieces of tissue they take) it was found that i have some non-specific inflammation there, which lead my doctor to believe that I am dealing with a form of colitis. With that said; I have discussed with my doctor the possibility of coming off the pentasa in 6 months to a year if i continue to have mostly normal bowel movements with little to no blood at all.
Now here is why I am really confused.
Could it, all this time, have been something entirely different????
I have read about a bacteria called C.DIff, that seems to fit the description quite appropriately considering the amount of times I’ve been on antibiotics in my life. Also in August of last year i went to Haiti with free the children and i had to have a VACCINE before i went. Apparently vaccines are bad news bears for someone with a strong and reactive immune system (which i have been told i have).
If any of you strong willed, admirable people out there in this community can shoot some opinions my way or maybe just experiences they may have gone through, reasearch links, ANYTHING really, i would greatly appreciate it.
Side-note. I have been hearing nothing but amazing things about Fecal bacteriotherapy, can someone expand on that and apply it to my circumstance?
Where I’d like to be in 1 year:
No more pills. I don’t want to take pills anymore. I want to be able to get lost in the woods with a loaf of bread and a bottle of water and not poo blood. I would also like to quit smoking :D.
I take pentasa. I also see a naturopath who i think has really made me healthy in every aspect. She prescribes me Adaptogen, Chlorogen, Multi SAP (vitamins), Probiotics (90bilion).
written by “D”
submitted in the colitis venting area