A Girl with Colitis Walks Into a Room

Introduction:

I’m 42 and was diagnosed with UC when I was 19 (also diagnosed with gastritis about seven years ago).  I started my own business last year, which offers me flexibility, especially when I’m not feeling my best.

Some more about me:

I’m originally from Hampton Roads, VA. I am a rabid Beatles and Bob Dylan fan and have been since high school (second generation fan). I am a writer by trade (education and practice) and own my own marketing communications company.

I’m of Eastern European Jewish heritage, which apparently, is a group of people who are apparently at higher risk than general population to have UC/IBD.

Current Colitis Symptoms:

Thank G-d, I am currently (knock wood) in remission.

A Girl With Colitis

As mentioned above, I’m 42 and was diagnosed with Ulcerative Colitis when I was 19 (also diagnosed with gastritis about seven years ago). My husband was recently diagnosed with UC as well (kind of odd that husband and wife have same condition, but there we are). I also have anxiety/depression issues, which my gastroenterologist said, sort of goes hand-in-hand with UC (at least for me).

Since my hubby was recently diagnosed, I feel like I’m helping him by virtue of being a veteran of the disease. I started my own business last year, which offers me flexibility, especially when I’m not feeling my best. I’ve been taking sulfasalazine and a folic acid supplement since I was diagnosed almost 23 years ago.

How do I feel about, er, my doctor checking my butt all the time? If it’ll save my life, I can deal with it (so long as I’m given anesthesia. Oh yeah..I woke up a couple of times in the past during the colonoscopy because I wasn’t given “enough juice.” That was a very unpleasant experience as you can imagine. Gee, doc…don’t be so chintzy with the stuff, eh?

I get colonoscopies every other year since I’ve had colitis for over 10 years. I try to manage my stress, which isn’t easy when a) I’m a Type-A personality and b) I’m running a business. All I can say is thank goodness for medication and cognitive behavioral therapy!? What goes on in your head, stress, etc. is just as important as what’s going on in your body. One usually affects the other.

Hubby takes Lialda and am wondering if an older, cheaper drug (i.e., sulfasalazine) with less side effects is still available, why he isn’t taking that or at least being offered the option. I’m concerned about recent blood work he had done and what the future holds in terms of remission for him.

Colitis Medications

Sulfasalazine – gold standard for me
Dexilant and Protonix for gastritis – both work pretty well.

written by Girl With Colitis

submitted in the colitis venting area









9 Responses to A Girl with Colitis Walks Into a Room

  1. joanna February 13, 2013 at 7:27 am #

    two UCers in one relationship?? you do have more than one bathroom right????? haha that must be hard but i guess it could work if your flares aren’t always at the same time. hopefully your hubby can manage his disease as well as you have. is he still having symptoms since he started lialda??

    • A girl with colitis goes by February 13, 2013 at 1:23 pm #

      I know, Joanna…the doctor said we were meant to be together..

      Thankfully, we do have two bathrooms.

      His gastro actually took him off the Lialda and put him on the same meds I’m on (though he’s taking 2 less pills a day than I am). The sulfasalazine seems to be helping him with the ankle and knee pain (doctor said it may, since sulfasalazine is an anti-inflammatory med.). Doctor wants to do a CAT scan of his pelvis and abdomen (another thing to freak me out?!) and redo the blood work a week before he goes to his next appt.

      Thanks for your reply and your kind thoughts.

      • Cheryl February 14, 2013 at 11:54 am #

        Hey there – I live in Hampton Roads – Virginia Beach – Would love to share some stories and see which Gastro you are currnetly seeing.

        • Valarie April 18, 2013 at 4:45 pm #

          Cheryl,

          When I was living in Newport News, I went to Dr. Ray James. He’s great.

  2. bev February 13, 2013 at 3:16 pm #

    Hello A girl with!!

    Yes, that is indeed the very first time I have ever heard of both people in a relationship having uc…on that note…a very happy Valentine’s day to you both…lol!! At least you know what each other deals with:)

    I also HAVE to comment on your music taste, my new friend…you may be a rabid Beatles fan…but I am rabid-er!! I don’t know if that’s a word, but it is now! Old Bob rules too. You have extemely good taste. I swear, Mr Lennon’s death in 1980 nearly broke me, but after my George Harrison passed away a few years back, my life lost alot of light at the time…oh well…I have managed to survive, as long as I hear lots of his voice and music…I’m really not overly sad any more…sorry to bring us both down! Thank goodness we can still listen to what they left behind whenever we want.

    I, like many other UCers am a type A personality as well. It sure does seem like the two go hand in hand. Luckily, after 15 years with UC, I have somehow managed to FINALLY get remission by actually going odff all of the meds and takeing a good probiotic and L-glutamine. I only hope it lasts forever. I plan on NEVER taking meds again!

    Welcome to the site…I wonder how many of us are Beatle-fanatics??

    Cheers
    :)

    • Valarie April 18, 2013 at 4:46 pm #

      Bev, great taste, my friend. Beatles music is so amazing..it immediately puts me in a good mood. Fab 4 is good for the soul (and gut!).

      • bev April 18, 2013 at 9:55 pm #

        Right?!

        The very best there ever was…or is!

        You have great taste, too, Valarie!

        :)

  3. Angela G September 9, 2013 at 6:31 am #

    I have 3 sealed, unopened bottles of Sulfasalazine that I would like to donate to someone in need. If the receiver will pay for shipping, I will gladly send it. I hate to throw it away as it is expensive. I have been switched to Lialda and no longer have use of this 90 day supply. Email me at fatboygal_1@yahoo.com and we can discuss.
    Thanks!

  4. Nancy M
    Nancy Marshall July 9, 2014 at 2:34 am #

    I was switched to Sulfasalazine when my insurance refused to.pay for the Lialda. I took it for 3 weeks and it caused my fibromyalgia to.flare up,putting me in bed for a week. I also noticed my urine output had dropped drastically. I have type 2 diabetes so I am in danger of kidney damage. I started SCD and have stopped the meds.. It wasn’t` working anyway. I am 60% better and am looking forward to life without drugs. I love hearing of other people`s successes and new ideas. As we are all different, no one thing will work for everyone. But we can try and see what works for us.

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No matter what, colitis flares don't last forever, don't forget it:)