Ulcerative Colitis Tips


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Experience and Hope

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:

 

OK,
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.

Alex

 

Alex’s Medications:

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




5 Responses to Experience and Hope

  1. Blake December 24, 2011 at 11:49 am #

    Hey Alex,
    My story is very similar to yours and I sympathize with you man. This disease truly sucks. I’m glad you are getting better everyday, that’s positive news. I was out of options and my doctor was pushing me towards colon removal and I finally agreed because I couldn’t see any other way around it and I knew the longer I put it off, the worse I would get. Anyway, I had my colon removed December 6th and I am glad I did it. Living with a ostomy bag isn’t great, but it far outweighs the uncertainty of life with UC and shitting blood 20 times a day. I could’ve kept my colon, but would’ve had to eventually quit my job, lost my insurance, lost the ability to take care of my son and wife and so on. I’ll eventually have the J Pouch done and hopefully life will get back to normal. I hope you continue to have success with managing your UC. Good luck and Merry Christmas!

    Blake

    • alex December 24, 2011 at 6:58 pm #

      Hi blake,
      Thanks so much for taking the time to read and respond to my story. My doctor, and just about every other person who has experience tells me a very similar story about the fear and resistance before making the decision to have their colon removed (which makes a lot of sense). But the other half of the story that follows is the relief and happiness people get when they do decide that that is the best (or only) option for them. I believe the stories I hear, and it gives me a level of comfort knowing that life goes on after surgery, and if it comes to that, I have learned from others who have taken that step before me, and continue to thrive. I hope yours is, and will be one of those stories.
      I also want to say I think we with u.c. r lucky that such a surgery exists, being as how it is considered a relitively safe and sure cure. Their are many diseases, and situations, that people can only wish for such a way out of. So let’s try to remain greatful (key word try).
      I wish you and your family the best.
      Alex

      • Blake December 25, 2011 at 2:04 am #

        Thanks Alex,
        I’m glad you read my post. I want to let people like yourself know that the whole surgery option is not such a bad thing. I would’ve loved to keep my colon, but that would’ve been a bad choice. I’m glad to see that you have an open mind to it. When I first got diagnosed with UC and began researching about it I swore up and down that I would never get rid of my colon, not me man! Well UC put tapped me out eventually, had me begging for mercy and I submitted. It wasn’t as bad as I thought it would be and I’m very happy I did it. I still have a long road ahead of me and have 2 more surgeries until I get the J Pouch and then figure out if that works out for me. It’s scary for sure, but I don’t have to worry about shitting my pants anymore, don’t have to figure out where all the bathrooms are, don’t have to worry so much about what I eat or drink (I’m drunk right now with Christmas cheer, haha). Now, I worry about concealing my ostomy bag which isn’t that big of a deal. So if you do have to make that choice sometime in your life, it’s not that bad. Sure, to keep your colon would be a far better option, but if your colon is whooping your ass everyday and making you hate life, don’t be scared to let that mofo go brotha! Also, if you do make that choice, make sure you get a good surgeon, one that does colon removal everyday, and I’m sure there are plenty to choose from in New York. A lot of people that get their colon removed don’t have that choice, they go into the hospital in an emergency situation and wake up not knowing what happened. If you have the choice, you have the choice of choosing your surgeon as well. I’m hoping you aren’t near making that choice cause it sounds like you’re improving, but this Son of a Bitch disease can get your hopes up and smash them in the same day so know your options. Good luck to you my friend and have a Merry Christmas! You let me know if you want to talk anytime (blakedidway@hotmail.com) and I can give you my number. Peace!

        Blake

  2. uma December 24, 2011 at 6:29 pm #

    Your approach is right. Have patience and this will go into remmission. Taper the steroids slowly. They are working. My

    colitis was similar to yours. It started with mild proctitis. I could eat everything and there the was occasional blood and

    mucus. But over a period of 22yrs it has graduated into pan colitis.

    I had a bad flare in 2010 but now i am in remission for over a year.I took the probiotic Garden of life Primal Defense along

    with slippery elm and Boswellia and my regular medication which is salazopyrin. Things are normal now. No

    symptom of any kind.

    So there is hope. Hang on.

    • alex December 27, 2011 at 6:55 am #

      hi Uma,
      thanks for the advice. its so great to hear the version of people who have been through this and have personal 24 hour a day experience,as opposed to doctors (who are great in their own way) who don’t actually have to live with disease, and who may not be able to see miracles, and gray areas.
      I’m very happy you are doing so well. Do you practice any special diet? I just started taking a boswellia pill 3 times a day. I still seem to be inching forward in my progress everyday. I believe this recovery process will be quite a long one, but moving forward almost everyday is has been truly motivating, and i believe sustainable for the long run. Just another lifelong lesson that i can work at everyday.
      alex

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