Life With UC

Hello my name is Luis I’m a transfer college student currently studying forensics science at John Jay College in New York. My hobbies are Martials Arts like taekwondo, karate, and kung fu. I also do a lot of reading on different sciences and I work with my father on a computer business. I was diagnosed with UC last year 2009 around August.

So when I was diagnosed I had many episodes of diarrhea, a LOT of blood and mucus in my stool, excess bowel movements about 10 to 20 times a day. Many sleepless nights going to the bathroom and on the rare occasion pain in my lower abdominal. Though before I got diagnosed I use to have a lot of constipation and I used to take a lot of laxative pills and prune juice to help. Though there were moments where it didn’t do anything because my body began to get used to it and then eventually I began to get the blood and mucus in my stools.  After that I decided to make a trip to the gastrologist. That’s when I received the bad news. So I was basically miserable I started to exercise less and feeling tired having embarrassing moments of running to the bathroom when I just finish coming out.  During my classes in college, and martial arts, also when I’m hanging out with my friends I had episodes.  Also there were so many moments where I had to start carrying an extra pair of underwear in my backpack to school because of some colitis accidents I started to have frequently. Endless stories which I could keep going on about but continuing on with my visit to the doctor I began to have several very UNCOMFORTABLE colonoscopies done to me and frequent check ups. After that I was given Aprisol pills to take 6 times a week and enemas. LOTS and LOTSSSSS of enemas to take beginning with mezalamine sorry if I miss spelled it. Then after that was not working I started to take corticosteroid enema.   O and by the way during all of these months of taking enemas it was VERY HARD for me to stick to the enema everyday or every other day schedules since well………….. you can imagine. You have the urge to go to the bathroom and at the same time you have to fight the urge to release this enema liquid so it’s the odds against you. But going back to my story I started to have positive and negative days with my UC. There many days that were depressing and even now depresses me since I was in a period of remission that lasted for about 3 to 4 months and I was happy but then it came back again. It started with just gas then my stomach making noises and now blood and mucus in my stools. I have been looking back as to what it was I ate that triggered the colitis again and now that I remember I believe it was the BBQ I had on the day my father had a reunion with his coworkers in a hospital. Every year they have a reunion and during the reunion they have a picnic at a park in Queens. At the park they had so many irresistible amounts of BBQ foods and vegetables and well you know when temptation comes in it’s so hard to resist. Plus the fact that it looks so rude when you say that you can’t eat there food. So I ate I had corn, rice cooked together with beans and ribs. After that well it lead up to where I am now struggling with colitis again. So now I am going to get a stomach check up tomorrow which they are putting me to sleep for then an intestinal check up Thursday and again being put to sleep. After that my doctor will let me try this medication that originally they did not want me to take because of the many side effects it has but now my new doctor thinks that’s it going to be necessary now. Though lets see what my results say after the check ups, hopefully it’s not to bad. Well this is the end of my story one last thing I want to say is something to ADAM the founder of this website. If you are reading this I want so thank you for making this website and I appreciate your support for everyone who has UC.




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5 Responses to Life With UC

  1. Vicki Thomas September 17, 2010 at 4:13 am #

    Hi Luis
    Hang in there! You’re not alone and please keep posting here – it helps to write about what is going on. Don’t be shy to tell it like it is. All of us on this website know exactly what you’re talking about. I too have to carry extra underwear and even pants with me. I hate having to do this but it is part of life now. I know the colonscopies aren’t fun but they are super valuable in determining what is going on with your ulcerative colitis.
    My approach to the embarrassing bathroom visits is to simply tell people I’m with that I’m sick and that if I get up in the middle of a conversation suddenly, it is because I have “to go now”. Your friends will understand.
    Keep us up-to-date with how things are going for you. And remember, don’t be shy to post on the site.
    And I agree – many many thanks to Adam for creating this website and giving us all where we can let it all out and talk openly about ulcerative colitis.

    cheers,
    vicki

  2. Luis September 17, 2010 at 10:37 am #

    hey thanks for the response its good to hear from someone who experienced the same problem. O and guess what yesterday I started the prednisone medication. Its working pretty good I didn’t feel so bad this morning. Just tired from all the tests they have been doing to me. I hope the side effects on this medication don’t happen soon. Have you taken this before. What was it like for you.

    • Linda September 17, 2010 at 9:03 pm #

      Hi Luis, I hope you are having some better days now with some medication. My son has UC and he is only 6 years old, so, we can definitely relate to your situation. My son is also on prednisone as well as several other drugs-Imuran, Asacol, Iron supplement, Folic Acid, Prilosec, and is doing Remicade infusion. That is a lot of meds for a little boy, and, I thank God everyday that he has not had any major side effects. The prednisone will put you in remission fast, but, the sooner your doc can wean you off it the better. Once you are on it though, they have to wean you off slowly because your body becomes dependent on it. We almost had my son completely off the predisone when, he had a major flare that he has had now for 3 weeks. Once again he is having bloody stools with mucous, fevers, and really bad abdominal pain. My son’s side effects have been hair growth…kind of funny to see a six year old with a little mustache and hair on his back and legs. The biggest thing I have noticed is it gives him some major “mood swings.” He has been on the prednisone for 5 and 1/2 months now and I can’t wait for him to be off it. Not to scare you, just know you were asking about some side effects. We are currently doing the SCD together as a family to support him and get him well. His Ped. GI. is talking surgery now to remove his colon and…………i’m not going to let that happen! I also have to pack extra underwear and shorts/pants for him when we go somewhere or when he is in kindergarten. He has been home for over a week now with a relapse but, it was a nice 3 months of remission while it lasted. He is slowly starting to show some improvement with the SCD. I wish you the best and as a “newbie” here myself, I hope to hear more stories from you and others so we can all get some mental relief about this horrible disease! Linda.

  3. Tony (UK) September 18, 2010 at 9:12 am #

    Hi Luis

    Try not to get depressed, its an awful illness I know but we fellow sufferers understand what you are going though, so you are not alone. I myself seem to be in constant pain with only brief periods of respite but you learn to cope after a while and do your best, I admit with difficulty, to block the discomfort out. I have found the majority of people, although not really knowing what the illness is, are sympathetic to our condition and make allowances for how we might feel on any particular day and how it might interfere with any prearranged events. Today is special for me as one of my consultants has put me on 8 x 5mg Prednisolone + 2 x Calcichew-D3 Forte tablets per day to try and clear up my recent flare up which just does not seem to want to go away. So far I feel great but I dare say there will be side effects, hopefully not to serious though.

    Keep your chin up we are with you.

  4. jennifer October 20, 2010 at 7:37 am #

    Hi Luis,

    My partner has UC and has found great success by following Elaine Gottschall’s specific carbohydrate diet. You should get her book, Breaking the Vicious Cycle. You are not allowed to eat any grains, no wheat, spelt, rice, etc., no refined sugar and a bunch of other things. My partner has been able to stay off steroids by following the diet in conjunction with some of the meds you mentioned. Hope this helps.

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