Living with Ulcerative Colitis, Liz’s Story

Hi, my name is Liz and I have had UC for about 12 years now.

I am 42 years old and a single and very active mom. After reading a lot of other people’s stories I would have to say that the most unique thing about my story is that I have never been hospitalized for this disease.

It was 1999 and I had just recently graduated college. I am an RN(registered nurse). I had a failing marriage and 2 baby boys. I guess looking back now it was a stressful situation. I left my husband, moved 1000 miles away with my boys and looked for a job as a brand new nurse. About 4 months settling into a new place, and a new job I started to notice changes in bowel habits that came on with no warning over night. My days consisted of running to the bathroom about 30-40 times a day. I noticed immediately that if I altered my diet to no coffee, no fast foods, and no dairy I felt a little bit better (less trips to bathroom) but still a lot nonetheless compared to a “normal” person. I went to see a physician who then referred me to a GI specialist. I was diagnosed with UC about a year later after a colonoscopy was done.

Funny thing, I went into remission without any medication after the first flare-up which lasted about 3-4 months and I lost about 30 pounds.  Woke up one morning and BOOM! GONE just like that! What the heck?? The doctor must have been wrong, huh? How could I have this disease if it’s gone now and I never took any medicine? I lived a normal life for the next year with NO symptoms. I ate healthy, I exercised 4-5 times a week, including running and biking and aerobics and yoga. I moved to Florida with my boys and had a great new job in a small community hospital. Life was great right? WRONG!! Huge flare-up! 10 times worse than the first one. Running around to bathrooms so many times a day I lost count. My boys know where every bathroom in Pinellas county is, LOL. They were great during this whole disease process, not your typical toddlers at all. All I had to say was, “Mommy has to run to bathroom” and they stopped what they were doing and followed me to public bathroom. They were troopers through it all. Well, I on the other hand was having a war inside my head trying to come to grips with this disease.

I couldn’t even say it out loud. “Ulcerative Colitis” sounds nasty.

I didn’t even want to talk about it, ever. I went to a new doctor who put me on prednisone and mesalamine. The prednisone did the trick almost immediately, within 48 hours no symptoms. I thought to myself, hmmmm good drug to have on hand. For the next 10 years I have been in and out of remission about 10 times. Seems that I had one bad flare-up a year, then one good remission lasting almost 3 years, for which i was not taking anything at all (against doctors wishes). Well in 2009 it all went down hill with 3 very long flare-ups with only a few months of remission in between. For the first time since I was diagnosed with Ulcerative Colitis, I was out of denial. I had to accept the fact that I have this and I cannot control it and I need to take medicine. I went through episodes of anger, frustration (with everyone), depression, I didn’t date for years due to flare-ups, and not wanting to date anyone because I would have to tell them I have UC at some point in the relationship and that was too much too handle. I would go into my doctor office crying and telling them that they needed to put me on something that worked because I could barely live my life. I didn’t go to parties, or social gatherings, or Holiday events because there would always be those few people who would come up and ask, “why aren’t you eating?” “Is there something wrong with you?” “Are you trying to lose weight?”

After a while I just said the truth, “I have a bad gut.”

colitis nurse liz

People understood eventually. I have to say I love to cook and I love to bake and cooking and baking all day on the holidays and then not being able to enjoy it was quite depressing. I got used to it though. I also found that over the years I developed a strategy for staying healthy and never ending up in hospital. I always take vitamins (whole vegetable source vitamins) I have always taken immune support vitamins. I eat when I know I am going to be at home! (Most important) Which is tough because I am a nurse that works 12 hour nights, LOL. I stay well hydrated all the time and don’t drink carbonated beverages and no coffee unless in total remission. Yes, there have been shifts where I maybe ate some crackers and maybe soup or half of a sandwich in 12 hours but I drink plenty of fluids all the time. I live on protein drinks at work most of the time. Thankfully my colitis has never been life threatening. Presently I am hopefully coming to an end of a bad flare-up which has lasted a few months now and for the first time in my career took a medical leave for a few weeks to rest and gain strength. (After a few co-workers told me that I looked like hell). I am currently on Asacol HD 8/day.

I had first Remicade infusion last Friday.

I was against Remicade for the longest time, but the time has come for me. I have been on everything else, and have early mild osteoporosis from prolonged use of prednisone on and off over the last 10 years. I am now hopeful for a long remission with Remicade. I don’t feel any differently yet, but it has only been 3 days. I pray that everyone reading this is hanging in there and that treatment is working for you. This disease can truly be a bitch sometimes, I try to stay positive and most of all live life! There is nothing better than a remission after a long grueling flare-up! It’s almost euphoric to feel healthy! Oh, and I try to laugh as much as possible, jokes help. Bathroom jokes, colitis jokes, whatever helps.

My boys are now 14 and 16 and they are AWESOME!

Caring and compassionate kids! They don’t like some of my bathroom humor though, lol. They say it’s TMI (too much info), my response is, “When you have Ulcerative Colitis, nothing about the bathroom is too much info.” LOL



8 thoughts on “Living with Ulcerative Colitis, Liz’s Story”

  1. Hey Liz,
    You are for sure my hero!!
    it’s so impressive how you have been able to cope with such harsh UC that comes and goes, and work as a nurse with two kids all along. Thank you so much for sharing your story. I hope you inspire others to start thinking that UC is for sure not the end of the world!

  2. Hey Liz! Yes, UC is tough,but I am glad to see another person who refuses to let this disease define their whole life. I too tried the SCD diet (many people were like, there’s a disease for STD’s? haha) and it was great! I was on Remicade as well until they thought I had leukemia. It was due to the medication…so now I am just taking Lialda and I am hanging in there. Keep up the good work and I hope you stay well! Glad you have such great boys!

  3. I love this! You are an amazing person Liz, you have given me hope about becoming a physiotherapist! I have one
    More year left before i qualify and i was worriedabout not being able to give therapy to someone when i needed thetoilet every second!
    I wish you the best of health xxx

  4. Great post Liz! Yeah, I have those same problems with not socializing. So awkward how much of social life is defined by eating and drinking. I’ve contemplated lying to people and claiming I can’t drink because I’m an alcoholic, since at least people understand what that is! Lately I’ve been trying to just level with people a little more… although I find that some of them seem to worry I’ve got something contagious! I’ll try your wording “a bad gut…” Maybe that’s the secret syntax!

  5. Hey Liz-Also check out VSL#3 DS(900BILLION bacteria per sachet)…it is prescription strength only probiotic and has had some reseach done to show promise for UC. Your Dr. can prescribe 1-4 sachets-work up slowly with probiotics. I am currently not on any other meds.except Lovaza(for the Omegas!) as I’m allergic or intolerant to pretty much them all-UC for 28+years-I’m 43 and work in a school! I was out of work for about a month and a half this winter, but I think the VSL#3 DS helped my bleeding stop with Humira-which I was allergic to all along, but got me out of the flare! Good luck with the remicade-I took it for 3 pretty good years(higher dose every 4 weeks)-and hopefully they are giving you pre-meds(solumedrol, tylenol, benadryl(which I later stopped and just kept with me). Hopefully you are on the remistart discount program for the Remicade. Hope this helps. Good Health, Shelly

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