Stop the Urgency, Please!!

Introduction:

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!!

Symptoms:

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?

Medications:

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

Tags: urgency

6 Responses to “Stop the Urgency, Please!!”

  1. AmosMarch 19, 2013 at 2:04 pm #

    Howdy Hockey Mom!

    Have you ever tried 1000 mg Canasa suppositories? I’m also on max dose Asacol and you can still take Canasa supps with Asacol and 6-mp (don’t take 6-mp anymore but used too). Anyway if you haven’t call your doc and get a prescription for one suppository twice a day because you want to try it and heard it was really helpful. Buy a little KY to ease insertion and slip one in right before you go to bed at night and see how you do with just that (once at night) for a while. If its not enough slip one in in the morning after your morning dump and another again at bed time. They are pretty easy to retain–way easier than the enemas (which I’ve also done). Can’t guarantee anything as I know sometimes I’ve flared and its still not enough but they are usually pretty helpful since the rectosigmoid area is usually the worst for UCers.

  2. TimMarch 19, 2013 at 3:19 pm #

    Hockey Mom

    Get a prescription for proctofoam HC or similar product. It’s easy to use and calms down your colon during a flare. It reduces the urgency for me BIG TIME. The product is normally prescribed for hemorrhoids or ulcerative proctitis. It is a 1% steroid foam but I haven’t noticed any side effects. Give it a try… I think you’ll be happy you did. Good Luck!

  3. AnnMarch 20, 2013 at 9:36 am #

    Hi UC Hockey Mom…I am not a hocky mom but I am a mom who was diagnosed in 1988 6 months after my first son was born…same thing, I though I had hemmorhoids too…not so lucky! You need to follow this website by searching graham evoo. After all of these years I have found EVOO 1T in the morning and 1T at night to be the most helpful. There are quite a few of us who are trying to treat UC without meds. I started on Feb 14th, 2013 with the EVOO and every other day Canasa suppository. I am now completely off the supposity and no longer bleeding…one or to bm’s per day…just returned from a very active vacation…plane’s trains and automobiles and never once had the urgency to use the bathroom…EVOO is truly amazing. Try it!

  4. bevMarch 20, 2013 at 9:56 am #

    Hi,

    Okay, here I go again!

    First, I believe that medical drugs are NOT the way to treat this condition. They never worked for me (or many others) and actually tended to increase my symptoms, including urgency. The only way that urgency diminishes, or goes away, is if you attain remission. As long as there is urgency, you are obviously not in remission.

    After dealing with UC for 15 years, and finally coming to the realization that pharmaceutical drugs do not work (including prednisone, which will take away all of the symptoms of UC, including urgency, but only while you remain on it), I now KNOW that the ONLY way to treat and manage it is by discovering what works for you, as an individual, NATURALLY. I know…it’s a pain in the ass to have to do the hard work yourself…but it is reality that we all must.

    For me, it is a good probiotic and L-glutamine. For others on here, it is extra virgin olive oil, while for some, it is pure aloe vera. For some, diet alone works. Whatever natural thing it is…YOU HAVE TO FIND OUT WHAT IT IS FOR YOU. No kidding…no joke. I was a total skeptic and non-believer in ANYTHING natural for years! I wish I would have tried what worked for me years sooner. I was brought up to believe in doctors and take their word on everything. Like God. Well, now that I am older and wiser (I hope!), I have learned to question and learn about my own health. Doctors are taught the medical ways only…textbook only….that’s it. Nothing dietary, supplemental, or natural. That’s just the way they are schooled… it’s not their fault.

    Please remember this. We have to take care of ourselves and take responsibility for our own health. The doctors will TRY and ‘fix’ you with prescriptions, That is their JOB. If you go for years on the meds, thinking that they are actually helping your health…it is a big mistake.

    Cheers,
    Bev

  5. Mike from Ohio
    Mike HMarch 20, 2013 at 1:32 pm #

    Believe it or not when I had UC (colon removed to due severe UC) I would always have one beer with my meals which would normally give me time to get where I needed to before having any issues. If I did not have a beer with my meals then by the time I was finished eating I was headed to the toilet. I explained this to my doctor and he agreed that the yeast foundis in some beers may slow down the nasties.

    I was one of the unlucky UC’ers that lost the battle to keep my colon. I tried diets, meds, home and natural remedies with no positive results. I never tried the fecal transplants, even though I neve knew they existed until it was to late I am sure I still would not have gone that route. But I can tell you other than being sore from the surgery do notfear losing your colon if it ever comes to that which I hope it does not. It really is not that bad and for me life without one is a hell of alot better than my life with one.

    Mike

  6. TrishMarch 20, 2013 at 6:45 pm #

    I can definitely relate to your urgency dilemma! I usually wake up at least 3 hours before I have to leave the house to make sure there’s enough time to clear out my bowels as much as possible. Feeling nervous or anxious while wondering if there will be a washroom close by or worrying about having an accident due to the severe urgency is something only someone else with UC can understand. I have yet to find a cure but I have started using Bach Rescue Remedy drops to help with the anxious feeling. It is made from flowers and designed to provide a calming sense. It works almost instantly! You can carry it with you and put a few drops on your tongue or mix it into your drink when you start to feel anxious. It’s worth a try if you are looking for something natural. You can get it in amazon. There are many reviews confirming its effectiveness. I really hope this helps you!

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