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

UC Has Made My Life Worse

Meet Neva:

I am a single mom, in my mid-40’s, of a 10 year old boy. I work full time in a very fast-paced office, and part-time in the evenings to make ends meet.

Some More About Me:

I give private Italian lessons to students of all ages, many of whom love to travel to Italy. My native language is Italian and I learned English from watching Sesame Street and Mr. Rogers.

Colitis Symptoms:

Terrible flare-ups almost weekly, with all the usual symptoms (resulting in prolonged visits to the bathroom). In addition, I occasionally break out in hives.

I now have bad joint pain, especially in my hands and shoulders, which is making even daily activities much more difficult.

The Whole Colitis Story:

Ulcerative Colitis has slowly restricted my world. I am afraid to eat because I’m always afraid it will trigger a flare-up, and I never eat at work.

scared to eat

I am afraid to travel, I’m always looking for a bathroom when I am in a store or have to attend an event for my son. I no longer go to dinner with friends or family because I figure why bother- usually there’s nothing on the menu that I can actually eat. I have missed some of my son’s milestones, like baseball playoffs and school field-trips, because I have had a flare-up or have been in the hospital due to one.

At the moment, I am currently on my 6th specialist and he was the one who diagnosed me. I have been in the Emergency Room or hospitalized almost every month over the last 24 months. I have insurance but the co-pays have added an extra level of difficulty to my financial situation.

One of the hardest parts is the “hiddenness” of the disease, and the fact that people know nothing about it. I get “well, at least it’s not cancer!” a lot. No one really understands the nature of Ulcerative Colitis, nor the hours of pain either. My mother means well but she constantly harps on me to eat and doesn’t understand the fear that comes before eating. My employer is somewhat understanding but I worry that one day, all goodwill will vanish and I will be left with no employment and no medical benefits. Having to leave in the middle of the day to go home and sit in the bathroom for hours during a flare-up is debilitating, not to mention embarrassing.

Some days I can cope far better than others. I would love any advice on how to cope, and what procedures others have put into place for dealing, and how to educate others on ulcerative colitis.

Medications:

Been taking Apriso for a while. Was helping. Seems to have stopped.
Was given Xifaxan for 6 weeks as well.
Align probiotic. Align Digestive Care Probiotic Supplement, on Amazon.com

written by Neva

submitted in the colitis venting area




single mom

6 Responses to UC Has Made My Life Worse

  1. Adam
    Adam December 9, 2012 at 4:14 pm #

    Hi Neva,

    I’m super sorry to hear that UC has got you down in the dumpers right now. It must be super exhausting worry about the bathroom and the “usual” simple of idea of living another day.

    But, (and you got to trust me here), life is going to get better for you. It will. This will most certainly not go on forever, and FOR sure, there will be a day in the not too distant future where you will be helping out another UC’er who is in the middle of tuff times.

    One thing that you talked about in your story is how others just don’t understand the whole UC dilema we as UC’ers face. And you are right. It really is hard to feel like others understand. Its an issue that I myself think about all the time, and I know most of the others who use this site do as well. Here’s my advice on that: take time to explain what life is like. People who care about you really do want to know the details of what you’re going through. Sounds crazy, but its true. So if you find a time in the near future where you’re talking with a friend or family member, and you just don’t think they “get it”, ask them if they’d like to hear the dirty details of what living with UC is all about. I’d be surprised if they weren’t interested to learn more. (And, if you are like most, it will probably make your head feel a bit better at the same time)

    You had another question about coping with the tuff times. Great question BTW! What I’d do, or do again for that matter, is read the results that we complied a few weeks ago from the 176 UC patient Survey that focused specifically on “Things to do when coping with colitis flare ups”

    Here is the link to that:

    http://www.ihaveuc.com/activities-when-youre-in-a-colits-flare-176-person-results/

    I wish you the very best, and big fat cheers to you for learning the crazy English language from my two favorite TV shows!! (And thanks for being the first to mention good old Mr. Rogers on ihaveuc.com!!!:)

    -Adam

    • Robin Schomer May 11, 2017 at 5:46 pm #

      Hello, my name is Robin and I am a veteran with ulcerative colitis, I am a nurse as well as a single mother who raised three kids alone .Currently 16-year-old son sophomore in high school, 18-year-old and 20-year-old daughters that are living on their own now and working. I was diagnosed with ulcerative colitis when I had my first child 20 years ago, and some days I have wondered how I got through working full-time, going fo nursing school and how I’ve been raising three teenagers alone with this unpredictable mean illness with severe flareups.
      I have had two hospitalizations that lasted a month long each, with two major flares in the past five years. What I can tell you is by the grace of God you will get through this. I am on Paleo diet SCD diet and take VSL probiotics daily with turmeric and a new Biologic Simponi. I’m currently in a flare because I was drinking a little wine… alcohol and stress and gluten are what put me in bad flares.
      I try to avoid stress but in the medical field sometimes that’s unavoidable as well as being a single parent.
      I also try to get out into nature to hike or run on weekends. I highly recommend the SCD and gluten free diet which seems to keep me in remission if I’m disciplined! Hang in there and know when to not push yourself and try probiotics and SCD diet.. you will get through this with gods help and good care of your self! Take care.

  2. Tiernee
    Tiernee December 10, 2012 at 1:00 am #

    I am so sorry to hear you are struggling right now Neva. I am, at the moment, fending off a flare and I enjoy putting my loved ones needs and wants long before mine. But when I am not feeling well I have learned and found the strength to put myself and my body first. I realize that without my health I cannot provide and serve my loved ones the way I want. It is very important to take the time to heal. If you are able to take time off, even a long weekend, just to sleep and relax, meditate and draw strength from some fresh air, I would. Stay stong and treat yourself well. It’s easy to get frustrated and mad at your body but it needs you to love it and care for it. Good luck and I hope you find some resources here that help you! Just being able to talk with others that know what you are going through is going to help.

  3. bev December 10, 2012 at 6:14 pm #

    Hi Neva…

    I’m glad to hear that you are taking probiotics. Don’t stop them. Your colon needs the good bacteria. I take a 50 billion strain one, and it has actually put me into remission!

    I sure hear you when you say you have a fear of eating. I remember when everything I ate, hurt, and then, to add insult to injury, went right through me. It is a horrible way to be. These things do eventually stop, and I think taking a good probiotic will help that to happen. Do you know what strain number it is? Also, make sure that you take it first thing in the morning, on a completely empty stomach. That seems to matter.

    Cheers, and welcome to the site! You are at home here…

    Bev:)

  4. Wendy
    Wendy May 6, 2013 at 10:02 pm #

    One thing you mentioned is that eating is an issue. I was on the thin side before I had UC, and now people tend to think I am anorexic. It is very annoying, so I do try to avoid being around situations where we’ll be eating. I tend to eat a normal meal like everyone around me concerning what is offered and then I’ll be super ill. If I am not in a flare that is somewhat OK, but right now I am and it is very dangerous and I could end up on the toilet all night. My mom seems to get it. She was there when I was diagnosed. I find that each flare has been different. My appetite isn’t that great right now (I’m in a flare right now) but once I eat something, I find I am hungry and I have to control myself to stop eating too much for fear of the severe repercussions. (I also never talk on this site unless I’m in a flare). I guess I’m fickle that way. Anyway, I am glad to hear another person felt pressured to eat and I’m glad another person mentioned that it affected her social life in a huge way. It has affected mine (not that I’m that outgoing or anything). I used to really enjoy going out. Now I try not to and usually don’t.

  5. Marcus June 4, 2013 at 9:31 pm #

    I have been through the worst “flare-up” since I have had this disease..I usually get flared, but can get out of it after a round of steroids, enemas, etc…My condition started getting bad in September 2012..I was having more bleeding with pain and fevers up to 103 F. I was finishing up a job contract in South Florida and my estranged wife were not getting along. Since then I have had to deal with a divorce. My family had to come and help me move and I missed work for 2 months!! I felt totally worthless!! I had never missed work that long since maybe college days. I went back work on another travel RN job in the Emergency Room and began having severe rectal pain! Turns out I had a rectal fistula. I had to have surgery that Friday and had to leave my job..I have since had another surgery for another fistula and dealt with severe pain for months!! I have been anemic, weak, dizzy and just pain sick!
    It is now June and I am getting my strength back..I felt like this has been a flare that I cannot completely shack. I still go to the bathroom maybe 8-10 times a day with intense pressure and painful defecation..I know things will get better, but I am extremely frustrated like yourself..It is so hard to eat and think about food sometimes. I too hate having to eat out with family or what not. I am self conscious about being too skinny although I am now back up to 170lbs..I am 5’10 and am finally getting back to the gym..I find that exercise really helps my mind and body. I wish there was more of a support group here where I live. Are you still really sick??

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