Introduction to Alex:
31yrs old, Diagnosed with ulcerative colitis back in 2005
I am from long island NY, lived in San Diego CA for 8 yrs, just moved back to NY.
Love to surf, and be active.
Having u.c. sucks, but am currently optimistic about conquering, and becoming a better person because of it.
My Colitis Experience:
I have been looking at this site periodically since I began my “FLARE” roughly a year ago. (Actually, since I’m never sure what anyone’s flare is, I just want to say, I started researching more heavily into possible cures and came across this website when my “flare” started really affecting me. I may have been in a flare for longer than a year because I had been noticing blood in the toilet pretty consistently for much longer than that, but with no pain, no urgency, and 1b.m. a day, i pretty much just ignored it.) I have finally come to a place where i feel like i can contribute something here (my story) and have a strong desire to do so.
So, from the top. My Dad has Crohn’s Disease. I quit smoking about 8 months before diagnosis. Symptoms began around same time as I go on health kick and am consuming large spinach salad daily(also there is e.coli recall on spinach).
2005 I ruin quite a few pairs of underwear with some
nasty bloody mucus(y) stuff and decide I better go to the doctor.
He does colonoscopy, tells me I have mild proctitis u.c. prescribes something. I go home, no more symptoms, dont get medicine, think doctor is stupid, go about my life for a year. Then, I kind of forget circumstances, but it comes back (THERE BACKKK).
Go to another doctor, get the scope, same diagnosis, just a little worse. This time I take the Colazal he prescribes, works like a charm, multiple years of colazal & burritos with no problems.
At some undetermined point I guess I start to bleed a bit,
but this has no effect on my life,
and I do nothing about it.
In general I am quite active, healthy, no drinking, drugs, smoking, rarely even caffeine.
Life happens, I decide to quit my job, buy a van, live in it, take 3 months to move back from san diego, to NY where I am originally from. Along the way I develop a cough and a little coffee addiction. (Oh, I forgot to mention, about 2 months before I left san diego I took some antibiotics for an ear infection.) Ok back to the story.
I get to NY, get health insurance, get more antibiotics for this cough which is pretty bad. Also having a little more urgency with the bathroom, but I figure that is just the coffee, still only one b.m. a day, with a bit of blood, but thats old hat for me. I figure since I have health insurance I better get a G.I. doc, and as time goes by my symptoms progress.
First he switches me from colazal to apriso. No help.
Then enemas. Symptoms are getting worse than i have ever had now and I cannot hold the enemas. They have no effect. I am getting to a point now where the 20 minute subway ride to work is becoming a problem for me. I have figured out that I need to eat breakfast after I get to work because i will need to use the bathroom urgently at least once everytime i eat. life is still semi manageable @ 6 b.m.’s a day if you can kind of predict them. Once i start ruining my underwear @ or on the way to and from work, I decide to quit, and life has really taken a turn for me.
Soon, I can barely leave my apartment. I’m on the bowl 20 times a day with a ton of blood (i want to try to be realistic and say some days could have been close to a cup full), and the urgency might be the worst part, I have about 15 second to get to the toilet. Sometimes I don’t make it and I live in a small 1 bedroom apartment.
First I get 40mg/day of prednisone from the doc. This has me feeling a little better, but not much.
Then we try remicade (3 times), nothing. I keep getting sicker. on my own I try SCD (though only for about 3 weeks and I didnt do the introductory diet as i was just reading recipes off the internet). Still no relief. I try VSL#3 probiotics for a few weeks (that stuff gets expensive if u take 6 packets a day like I was). I continue to get worse. My doctor gives up on me, sends my to the head G.I. guy for the hospital he works. I get another scope. Diagnosis now severe pan colitis. Scope aggravates symptoms. It’s Thanksgiving 2011, I spend the next week waiting to see my doctor in horrible mind numbing pain, more than 30 times a day in the bathroom, mostly just passing blood.
I finally get to the doctor, I’m normally a trim 145 pounds at 5’8″ now I’m under 125. He looks at me, and has me admitted to hospital via emergency room.
The hospital sucks. They put me on 60mg i.v. steroids. surgeons come and tell you about the j-pouch proceedure. The nurses and patients are loud, and there is little sleep. After 5 days on the i.v.
I am told by my doctor that i am part of 15%
that do not react to steroids and that he recomends the surgery.
I’m scared and a little pissed because I am going to the batroom 15 time a day now, still with blood, which he sees as a failure, but i see as a 50% impovement. so, I don’t follow his suggestion. They put me on 60mg oral prednisone, monitor me for 2 more days, i do not regress, they send me home. I had begun reading “the makers diet” book while in the hospital, and started the diet as soon as i got home. I don’t want to pimp this guys book or products here, but it is part of my story. Anyway, just being out of t he hospital and home is making me feel better already. i think i get to sleep for like four hours straight, followed buy a crap, followed by more sleep. I am really trying to follow all of the suggestions in this book (except i havent bought any of his products….yet).
Well i have been out of the hospital for over 2 weeks and i am feeling better than i have in a long time. that being said i am realizing how sick i was because i am still far from good. I have dropped myself down from 60mg/day to 50 of prednisone, and realize that is still a high dose, but for someone they said it didnt work for, im glad to be doing as well as i am, and plan to drop down to 40mg soon. My future plans are to continue my diet and lifestyle. I am not religious, but this experience has had an effect on my spirituality, and i wish to pursue that aspect of healing as well. I am going to see another doctor tomorrow, who has had some experience with “fecal bacteriotherapy”, and i am interested to hear what he has to say. My current doctor wants me to start 6mp, but once again I am deciding not to listen to him (at least for now) as i do not feel another immune-suppressant is the answer for me.
My syptoms right now are changing everyday.
Yesterday, i had 4 smooth formed (though visibly constricted) b.m.’s with no blood. I am not in pain.
I really believe I am getting about 2% better everyday.
To me this is a miracle. I hope what i have written here will help someone, and im not sure how this works yet, but i am going to try to update my status and communicate with anyone who wants, as often as possible. I wish the best to all my fellow u.c. sufferers out there.
Have taken balsalazide (colazal) for first 4 years, seemed to work well, no special diet, then i begin a flare(possibly antibiotic induced?).
Have since tried Apriso, and 3 Remicaide infusions with no positive results.
Have also tried rowasa and hydrocortisone enemas, unable to hold, no results.
Was put on one course of prednisone 40mg with small positive effect.
Recently hospitalized(and released) IV steroids 60mg took a week to even start working.
let out on 60mg oral prednisone.
down to 50mg, symptoms still improving…….slowly.
written by “Alex”
Submitted in the Colitis Venting Area