Ulcerative Colitis Tips


One of the 15,000 ulcerative colitis folks using the site adds:
"Like many UCers I have spent many hours trawling the internet googling the condition and came across your website a few years ago. I read your ebook and really liked your honesty and humour. As everyone says your positivity is so encouraging and now this is my go to website when I'm thinking about UC. Thankfully my symptoms are pretty much under control at the moment but just wanted to say thanks." Kate

My Story…SO QUICK!

Meet Mason:

I am a 22 year old male from Saginaw, MI. I have UC, and am rockin’ a bag! I am new to UC. I have had UC for 2 months ish, and already had my colon removed.

A Little more about me:

I’m from Saginaw, MI. But I have lived in Orlando, FL and worked at Walt Disney World! Best job ever! I play video games, and listen to a lot of music. Just trying to adjust after my Surgery back to normal life.

Current Symptoms:

Still passing blood and mucus. Occasional pain with weakness.

Only Two Months and My Colons Out

Here is my short but long story of my Ulcerative Colitis. I started with cramping and small amounts of blood in my stool mid Sept of 2012. And for the next week and a half the symptoms just got worse with more blood and weakness. I worked a lot, so I pushed off getting checked out, but finally pushed myself on Oct. 3 2012 to the Emergency Room. The doctors gave me a CT scan and didn’t find much wrong with me (there were awful doctors) and sent me home with an antibiotic. Over that weekend I got really bad really quick, and the next Monday was vomiting and having awful diarrhea so I went back to the E.R. They kept me, and decided to do a colonoscopy in the morning. They found inflammation and put me on medication to see if that would slow down my symptoms.

After a week and a half on medicine, I kept getting worse and worse so the doctors decided to send me to a specialist in Indianapolis. I arrived on Wednesday night, and had a second scope Thursday morning. I will never forget how he described my colon, “Your colon looks like stepped on ground beef”. He told me that he doesn’t usually do surgeries on Fridays, but he didn’t think I would be here on Monday if we waited. I was so scared, but anxious to get this done. Morning of the surgery I was so sick, my parents were so scared they might lose me. I was so weak, I had lost almost 50 pounds in 2 weeks.

My surgery went well, they removed the colon and I now have a Ileostomy. It has taken a while for me to build strength back, I was in the hospital for 32 days…that wears you down!

My questions:

colon removed in 2 months

I’m new to this, but everything I have really came out of nowhere! I spent 2 weeks with pooping blood then had surgery right away. Is this normal, or do most people live with this for a while before things get really bad?

written by Mason

submitted in the colitis venting area




ileostomy

11 Responses to My Story…SO QUICK!

  1. joanna December 20, 2012 at 9:44 am #

    hey mason! wow that was fast! i’ve had UC for 6 years but it’s been bad the past two. my doctors are always wanting me to get surgery, but have never said it like your doctor- “life or death!”

    i have inflammation in my colon but no ulcers. i’m sure if your doctor seemed that scared about your condition that it was the right condition. if my doctor had told me in the hospital that i wouldn’t be around for the weekend, i’d be like “take my colon out now!”

    how is it living with a bag? i am sure that surgery is in the future for me and i’d pick a permanent ileo. does it get in the way of things or have you gotten used to it already?

    • Mason December 20, 2012 at 11:06 am #

      It was scary, but I had wonderful surgeons and have wonderful family. The bag is more mentally tough than anything. Its been 2 months with it, and im slowing getting used to it. for a while I didnt want to do things fearing it would fall off, or get wet, but now I do a lot. Im getting my j pouch surgery in april to reverse this, but the way I look at my bag now it would be horrible to have it forever. Just stay super positive and do things you love…thats what life is about!

  2. K December 20, 2012 at 5:30 pm #

    Hi Mason,
    You may have me beat! I was diagnosed with IBS in the early 1970s and somewhere along the way it must have become IBD, because I was in a several week(what is now called)flare in January 1975 when it was diagnosed as uc and I was hospitalized. Three days later the colon perforated, so they took it out that afternoon. Over those several years, I think I was under pretty good medical care for the times; it just wasn’t “caught.” I was in the hospital 16 days, back to work part-time in two months, and full-time in four months.
    So I have had the “bag” for almost 38 years. Fortunately, I was through college and into a career, so life just continued on with the somewhat inconvenience of an ileostomy, which is nothing (if you ask me) compared to living with uc.
    Glad to hear you will have a jpouch. That hadn’t been “invented” when I had my surgery. Hopefully, all this will just be a half year experience on your highway of life. I wish you all the best as you go forward.

  3. Blake December 20, 2012 at 8:48 pm #

    Hey Mason,
    That was pretty fast. I had UC for just under a year, two flares and then the colon was gone. I think it’s better to go through a short misery than to drag it out for years. I’m kind of glad I had a bad case that didn’t make the decision so hard. I have been living with the J Pouch since August 21st 2012 and things are great. I got my life back, playing with my 3 yr old son non stop, going to the gym all the time, working full time. I did have my UC long enough to know that I don’t ever want that disease again, so surgery was the right thing for me. Good luck to you bud.

  4. Jennifer December 20, 2012 at 9:07 pm #

    Hi Mason,
    Glad to hear you are recovering so well! May I ask who you doctor in in Indianapolis? Why were you referred here? We live in a suburb
    of Indy, and have a wonderful doctor locally. My 16 year old son has been diagnosed for a little over a year now….it has truly been a struggle. Ended up spending 6 days in the hospital due to mono and a staph infection in his throat while on an immunosuppressant. Hoping you continue to heal quickly and adjust well to your ileo! Merry Christmas!

    • Mason December 22, 2012 at 9:38 am #

      I had Dr. Shekar Narayanan. I was sent to him by the hospital, so I didn’t have a real reason to going to him personally. But after meeting him and his team, and after the surgery I just love the man. He cared so much about me, and my family. He always made sure whenever he would come to the hospital, the time would work for my parents. I highly recomend him, I owe a lot to him.

  5. bev December 22, 2012 at 9:27 am #

    I think that was faster than most of us with UC. For some reason, your colon got totally shredded and I’m not sure why…unless you are super sensitive to antibioics perhaps? Yes, your case was very very rapid.

    Anyway, no worries now! You are colon free and can now go on to live a happy normal life…and as an added bonus…no worries of colon cancer…EVER!!! Yippeee!!!

    Happy holidays Mason!!

    Bev:)

  6. Lisa OH
    Lisa December 22, 2012 at 2:29 pm #

    Hi mason. My story is fairly similar to yours. I started having symptoms last december, 2011, had a colonoscopy dec 30th, which revealed pancolitis. unfortunately, i did not respond to any meds, so by feb, 2012, my colon became toxic and had to come out. It was surreal how fast everything happened. Also along the way, I got CDiff 3 times (2x in small bowel). C diff and colitis have been popping up together more often, so if your symptoms don’t improve, ask for a cdiff test, just in case, so they can treat it properly.

    Currently, I’m in the hospital recovering from the final takedown jpouch surgery and feeling pretty good. Everything seems to be working as expected. I am happy with the results so far. Hang in there, things WILL get better.

    Sending healing thoughts your way,

    Lisa

    • Mason December 22, 2012 at 6:37 pm #

      Thanks guys! And I’m happy to hear your doing well now lisa. My jpouch surgery is scheduled for April, how was it? I just hope I’m not down as long as I was this time! But things are getting better, and I hope you have happy holidays!

  7. Lisa OH
    Lisa December 23, 2012 at 5:34 am #

    Hi mason. I was up and about sooner after my 2nd surgery than the first b/c I wasn’t so sick going into it. I had more pain after the 2nd one, though. The takedown has been the easiest by far. Sounds like you are healing well!

    Happy holidays!

    Lisa

  8. Faith February 2, 2013 at 7:00 pm #

    Hi Mason,

    I’m Faith and am 22, from WI, and rockin’ a bag too! I felt like mine came on fast, because after about 5 months with UC I had my colon removed (doing the 3-stage surgery process). Symptoms and Antibiotics July, Diagnosis with UC August, Remission September-October, 2nd flare-up & Colectomy/Ileostomy surgery November. I spent around 25 days in the hospital and lost 30 pounds. Doesn’t it feel great to get your strength back?!? Keep rockin’ the bag!

    Wish ya well!
    Faith

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