Ulcerative Colitis Tips


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I Hate Ulcerative Colitis, But I Love My Mom

I’m a 15 year old female, there are times when my meds stop working and my body doesn’t always respond to them.

I was sitting in class, in Health, ignoring the teacher about CPR. I really don’t care about that. I started getting all hot and sweaty, the color drained from my face, and I was like oh. Ok. Uhmm.. I’m sick. I was wrong. Really wrong. I went to the nurse and about halfway there I almost had an accident. I love school, everytime I have a flare, it’s during school. Only one of my friends know that I have it, and every teacher I have has me on Medical Lockdown and watches me closely. In a school of about 5,000, I’m the only one who has UC. It’s very lonely. Anyway, I ran into the office and passed out from trying to hold everything. It was great. My mom knows how important it is for me to just get home and not make a huge deal out of everything. At times like this I’m thankful at least one person I know is understanding about my condition. My mom’s car is new, so obviously I didn’t want her to get mad if I had an accident. So I was about to pass out again from just holding my guts and everything and my mom goes “Just let it go, it’s okay.” I’m so glad I have a mom. I don’t know what I’d do if this was my dad. And my medication doesn’t always work, is there a medication stronger than Lialda, other than prednisone?

submit your ulcerative colitis story and questions here just like this UC’er did

Information about the Ulcerative Colitis Diet called SCD which stands for the Specific Carbohydrate Diet




3 Responses to I Hate Ulcerative Colitis, But I Love My Mom

  1. Kristin December 17, 2010 at 5:30 am #

    Hey there,

    I can relate to your story SO MUCH. I’m 24 now and my UC was diagnosed when I had just turned 23, but I had UC from at least age 16 or 17 and didn’t know it. At least you are diagnosed and have a name for what you’re dealing with. The end of my high school career was awful for me. Same thing– I had all my flares while I was in school (part of it for me was a fear of not being able to get to a bathroom at all, nevermind in time. My school would lock the restroom because kids used to smoke in them– stupidest thing ever, and caused me so much stress one time I was about to explode in a class and I didn’t even ask if I could have a restroom pass. I just said “I’m going to be sick” and ran to a bathroom, and it was locked and I had to get a key and almost had an accident. I totally understand how you feel.)

    I know what it’s like to feel like the only person with your disease. I didn’t know what was wrong with me and I kept it very private. I didn’t even talk to my friends or my family about it until I was in college, and that’s when my grandmother encouraged me to see a doctor and make sure it wasn’t UC because my grandfather had had it. Still took me a few years, but I ended up going. Thank god I did, but my meds haven’t helped either and I just took myself off them and I’m researching the SCDiet instead.

    I was on Lialda first and had ABSOLUTELY NO improvement. After 6 months my dr said “oh that’s normal, a lot of people don’t get better on Lialda.” Why prescribe it then?? Next I was on a combo of colazal pills (9 a day) and Rowasa (at night). I would get better and then get worse again. I admit I wasn’t always the best at staying on the meds, but after a bad flare this fall and after taking them for a year, I decided I was done with that. I had a nasty flare over Easter weekend that forced my dr to put me on 20 days of prednisone, which sucked. Anyway, if I go on meds again I want it to be something that will work quickly and well. My first priority is fixing my diet though. I think that will really help.

    I know it’s tough being in school and having UC. The one thing I’ve learned is that you can’t let the disease stop you from living life. I have let it keep me at home instead of seeing friends and going places, and that really is awful. I’ve also learned that having UC is NOT something to be ashamed of. Yeah, so we poop a lot. I tell everyone in my life about this disease because it’s easier for them to know and support me through my illness than for me to keep it a secret. I recruited friends and family for the local CCFA walk last year and it was great to have them all backing me up. My husband is the most supportive of all– he makes me feel normal and reminds me that I didn’t choose this disease and that everyone has something, my something is just an illness that makes me go to the bathroom a lot. He isn’t grossed out or bothered by it. He doesn’t mind when I rush to the restroom when we’re out together. I don’t know what I would do if I didn’t have supportive people. So I recommend telling your close friends about your disease. Make sure they know it’s chronic and there’s no cure and it affects your life everyday but you need their support so you’re not alone in this. And you know what– I would bet money that other people in your school have UC. They either aren’t diagnosed, like me, or aren’t sharing it, like you. Either way, once you start talking about your illness, you will find EVERYONE knows someone with UC or Crohn’s. That’s been my experience, and it makes the disease a less lonely place when you realize that so many people actually do have it, too.

    BEST OF LUCK TO YOU, SWEETIE. Let me know if you ever need to talk. I’m more than happy to chat about this cruddy disease and how to survive high school with it!!

    Kristin

  2. Jessica December 17, 2010 at 8:47 am #

    Hey,

    I can also totally relate to what you are going through. My life was dramatically changed when I started experiencing UC sysmptoms and then when I was finally diagnosed with it. I was young, outgoing and always out and about!

    Its such a hard disease to live with when you are young because it affects your life so dramatically. For me I would think about twice about going on vacation, road trips, or even anywhere where there were no facilities available. I’ve had embarassing accidents many times.

    My mother has been amazing through all of it, she has been supportive, sympathetic and loving. I could not ask for more. Also, since i’ve been on the SCD she has transformed into my personal chef, she prepares most of my meals for me and I am so grateful to have her!

    Maybe you should try the SCD out, it really has changed my life and it could be your answer for you!

    Good luck to you! :)

  3. Jaimee December 18, 2010 at 8:55 am #

    Dear Jessica:

    What a great mother. I have a wonderful one, too. I’ve had UC for 15 years. It was my mom who talked me into keeping some disposable diapers (I know that’s funny), wipes and a change of clothes in my car at all times just in case you feel a spell coming on and can’t get to a bathroom. You can pull over and slide the diaper in place and go if you have to. At first I thought she was crazy, but being prepared can really alieve a lot of stress about it. My family understands the deal and they know about my “bathroom runs”.

    Now I have daughters, and I pray they don’t come down with this tough disease, but if they do, I will do everything I can to help them. Just like your mom. Because love goes way deeper than UC!! Keep your chin up. This is not always fun, but it’s handleable and you will have a great life!

    Jaimee

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