I was diagnosed with UC about 10 years ago after my first son was born. At first I was diagnosed with IBS. I figured that I just had hemmorhoids from the pregnancy/delivery but I was diagnosed with UC after having a colonoscopy. Over the past 10 years, I have had 4 colonoscopies and tried MANY medications.
Some more about me:
I am a 39 year old, stay-at-home, homeschooling mom of 3 kids and constantly busy. I live in PA. I have been married to my awesome, supportive husband for 13 years. My kids are very active … which means that my husband and I are usually in a car traveling to a hockey, lacrosse or soccer game. Not a great place to be when you are dealing with UC urgency!!
I have had many symptoms over the past ten years but the most consistent and debilitating symptom is the urgency.
Stop the Urgency, Please!
I have found, like most of you I am sure, that living with UC has been really tough. Especially being a mom of extremely active kids. Heck, I used to be active myself!! The medicine sometimes makes me tired or down. I used to love car trips. Traveling was fun! Now, even a 15 minute car trip can cause anxiety. My kids play travel hockey, lacrosse, and soccer. Two different travel hockey teams. Carpooling would be very beneficial. But .. carpooling is never an option because I don’t know how many stops I will have to take and explaining my UC is embarrassing. It puts me (and my hubby) in a place where people may think we are selfish (not offering to carpool) or unsocial, when the truth is … I have UC. Our neighborhood is very social with many parties and get togethers. We turn down a lot of invitations because I don’t want to have to go to the bathroom in someone else’s house several times! Thankfully my brother has UC and we have been able to support each other. It is nice to have someone that completely understands. My husband tries to and is really supportive but I don’t feel you can really understand unless you have Ulcerative Colitis. With my kids playing travel hockey, some games are over 2 hours away. If I go, I always have to leave plenty of extra time for stops and look for bathrooms along the way (almost obsessively). Some tournaments are farther than that. I usually don’t go to them. Last year their team got to compete in Canada. I didn’t go because of my UC. Lacrosse and soccer games have different problems. Port a pottys. Who doesn’t love them. And if the field is far away from the bathroom … I worry … then the stress makes me have to go … It’s a vicious circle! Anyone have things that have helped them with urgency?
I currently take Asacol (4 pills 3X a day) and will be switching to Apriso soon (4 pills 2X a day). For the sole purpose of less doses. I am in the beginning stages of trying Mercaptopurine (2 a day). I have been taking it for 3 months and still not seeing improvements yet. My doctor also started me on a prescription strength Immodium.
written by “UC Hockey Mom”
submitted in the colitis venting area