Ulcerative Colitis Tips


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I Owned that Bathroom at Work

Introduction:

I was diagnosed in November 2010, after having gradually increasing symptoms for over 8 months. I had a totally normal scope a year earlier and then this. The symptoms got pretty dramatic, with 30 to 35 trips to the bathroom and lots of bleeding and nausea. I thought it was IBS because I was under a lot of stress…money problems, kid concerns, trying to finish a PhD to boot and I work in a prison! My gastroenterologist was surprised at the findings, clearly ulcerative proctitis. I am now on Asacol and Canasa daily. They keep the symptoms down, but not gone, and Proctofoam when I flare.

The Story:

My story is pretty much the same as most I’ve read. The symptoms came out of the blue, and gradually built up. I thought it was stress and IBS or diet-related. I was trying to finish up a dissertation and PhD, and between it and an internship and full time job, and my stress-o-meter was red-lined for months! To top that off, I work in a prison and we have ONE bathroom between 30 staff members. Although I was working at night, I owned that bathroom at work. The officers monitor the work areas by camera and I can only imagine what they thought about 25 trips to a bathroom per shift if they watched me….in a prison, that is suspicious behavior and I lived in fear that they would think I was using drugs or drinking on the job or smoking in the bathroom. The bathroom situation alone would strike fear into the heart of anyone with UC, but add to it that when I move from one part of the institution to another, I am stuck waiting for doors to be ope ned for up to 15 minutes at a time. There was often one officer in a remote booth managing tons of other doors and he stood between me and the nearest bathroom…I had many accidents. I covered fairly well, but it was just awful. I started planning my life around where the next bathroom was, wearing adult diapers just to make it through the workday. Since I had just had a normal scope a year earlier, my GP didn’t think it was UC and we treated IBS and lactose intolerance. She finally insisted that I go in for another scope and the UC diagnosis was a relief. Right now, the running to the bathroom part is under control more or less, but I am having a very hard time with the joint pain: lower back, knees, shoulders, hips! They keep me awake at night. Absolutely any help and ideas for that would be welcome. I feel like I have the flu coming on all the time! I haven’t identified foods that cause a flare, but plan to buy “the book” with the SCD info. I had to laugh at the comments on Asacol…AKA horse pills. What is it about those pills? They’re like swallowing rocks and they are so expensive! I had to laugh at the person who posted that he calls them “Crapacol”! Thanks so much for giving me something to laugh about!

Medications:

Asacol versus the non timed release version. Does anyone have experience with these? The non timed release ones are a lot cheaper. Any ideas re: joint pain treatments besides addictive pain killers, which I won’t take. Any experience with chiropractic? Specific foods that make this worse?

Submitted by “UCKatie”




8 Responses to I Owned that Bathroom at Work

  1. Marah April 2, 2011 at 11:35 pm #

    When I was first diagnosed with UC in February 2010 I was taking Asacol and doing better. About 3 months in I had a HORRIBLE case of joint pain but only a slight flare-up. One night it got so bad I had to call a friend to come break into my house to get me out of bed to the bathroom because I was in so much pain I couldn’t move. Tired of literally sleeping with my phone in my hand I went and saw my doctor (Dr. Joseph at Baptist South {Old St. Augustine Rd.} in Jacksonville, FL). He changed me from Asacol to Sulfasalazine to help with joint pain (some of the sulfur is absorbed to help the joints, the rest dissolves and coats the colon to help the UC). Haven’t had joint pain since. The pills taste absolutely awful and you have to take them 4 times a day (seriously!?) but that’s the only downside. There is a risk of pancreatitis with it but it’s very rare (found that out the hard way). I’m the only person I know that’s ever had a problem taking it so I think it would be worth a shot to talk to your doc about it.

  2. Kathy p April 3, 2011 at 4:35 pm #

    Hi UCKatie

    Have you tried fishoil for the UC And joint pain? Google it and see what you think.
    Kathy

  3. Adam
    Adam April 4, 2011 at 2:59 pm #

    Hey UC Katie,
    I totally know what you mean about owning the bathroom. I was stuck in an office at one time which was 6 people, and 2 bathrooms (1 men. 1 womens)
    anyways, the men’s bathroom did not have a fan in it to dampen the horrendous sounds that tooted and blurped out during my 10-20 bathroom breaks per day.
    Anyways, when the 1 womam from the job wasn’t in town, I’d use the women’s room instead, what a relief that was… (can you imagine…) just to have a fan to dampen the music that everyone else could hear..
    Good Luck witheverything!
    All the best,
    Adam

  4. Paul Willoughby April 4, 2011 at 5:21 pm #

    I feel you on this one. I often joke with my office mates at work that it is my second office and I should take my phone and laptop with me. Hang in there.

    Paul

  5. Katherine April 6, 2011 at 2:44 pm #

    My work place has lots of toilets thankfully… One of which I have almost sole possession of! Without this I couldn’t have done my job for the last 4 years…. It’s great to know I have an unlimited amount of paper, privacy and mentally this helps a lot. It’s like a brand of a well known chemists with every product under the sun, wipes, bags, paper, hand sanitiser…..

    There has to be a lighter side to this whole UC nightmare…..

    Chin up peeps, won’t help the UC, but the sky is a lot better to look at than the bathroom floor….

    Katherine

    • Rebeka
      Rebeka April 9, 2012 at 9:28 am #

      Love it, Katherine!
      Hope you don’t mind me sharing that last line with anyone?
      “The sky is much better to look at than the bathroom floor” – Perfect!
      I remember those days I could finally leave the house again for a couple minutes at a time with my dog. I could barely walk because every movement still caused pain, but I was so happy to be outside again and see the blue sky, breathe in the fresh air… Now every morning I go out for a walk I think back and am happy I can see the sky and feel the sun, and not be in pain!
      Staying positive and calm, not letting the disease rule our lives, are huge factors in keeping us feel good.

  6. Shirl April 8, 2012 at 11:34 am #

    I felt the same way too, you’re not alone….before I was diagnosed & increasingly sick, it was down right embarrassing to have to keep running to the bathroom. Especially those events that had porta potties for about a billion people. I might be exaggerating, but there were so many comments on the other side of the door. I wanted to shout: “No one WANTS to be in a porta-potty!”…especially over & over.

    At work it can be just as difficult. Sometimes I have to run a register, and there are long lines. Going into that cold sweat & cramp stage of it…wondering when I can make a mad dash to the back, and that’s if the bathroom at work is not occupied already. It’s miserable.

    I ended up in the hospital. Out of work for a month. I finally got scoped & had a diagnosis last year. Sure I had bouts of what I thought was IBS. Doctors couldn’t really figure out what was going on with me. In college, I had to run out of taking exams. I got very thin from not eating for fear of being sick.

    I always was aware of bathroom locale. I tried a lactose free diet. I tried Immodium AD. I am now on Asacol too. 2 pills 3x a day. I tried Sulfasalazine for joint pain from a rheumatologist. It made me sick, and for now it is all natural anti-inflammatory supplements for me. I tried fish oil, it didn’t help the joint pain for me. It does seem to help the GI system. You have to take high doses for fish oil to be effective, and it seems to bother me- I tried all different kinds that claim no aftertaste. I just try to have fish in my diet, the rheumatologist seemed to concur that it does not help joint pain much (in his findings with UC).

    Right now, I am managing the bathroom part better. The joint pain is still an issue, especially when I work. Like you- my shoulders, hips, knees…lower back- more intense if I flare.

    I had to cut back my work hours in half. I can’t do as much as I used to. I admit to coworkers, friends, family where I am with things. I figure we are all human, and have our health issues at some point.

    Hopefully, you can relieve some stress in your life. Ultimately I believe it means letting go, and that is hard to do. It also can be financially impossible. My husband has to work more, since I can’t. He is actually working Easter today :(

    I hope all the support on Adam’s page lifts you up, and please stay with us on here!

  7. stephen April 8, 2012 at 3:03 pm #

    Once during a flare up, my boss’s bos told me to use the washroom on the other side of the plant so I could free it up for the other front staff employees. (Specifically him)
    It was only a few days during the flare up, but was just so embarassing

    At my current job I work night and am one of the only front office staff so I can avoid hogging the washroom

    Or avoid crossing the plant in urgent situations

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