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"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

The UC Road I Traveled

Here’s Monnie

Introduction:

I am a wife to a great man, mother of 2 teen boys, God fearing, ileostomy wearing, gun toting, PTA card carrying, book reading maniac, animal loving, wannabe runner, writer & shoe diva… This is who I am.

My Story:

Where do I start in telling you about my journey with UC?
I guess the beginning would be ideal but, to do that we must go back 8 years to 2004. This is the year of my diagnosis into the UC fraternity. I was 31 years old.

My symptoms started quietly at first and coincided with the dying of a close friend to breast cancer. The stress of her battle brought the UC front and center in my body. As she lay dying in her bed, I was running back and forth to the bathroom in tears with excruciating pain and bloody diarrhea. I was diagnosed in July and 2 weeks later, on a warm sunny August day, my friend passed away.

I spent many, many hours in doctor’s offices seeing various specialist, visited the lab for countless blood tests and frequented the pharmacy almost on a weekly basis. The hospital became my 2nd home including one miserable stay located 9 hours away from my husband and kids for a flare that nearly did me in. I tried numerous medications in order to keep the UC controlled but rarely having success lasting longer than a year at a time. The last treatment-Remicade-was the best, giving me 3 years of relatively symptom-free life.

monnie doing a race with colitisBut I guess all good things must come to an end and so this was true of Remicade. In August of 2011, I flared for the last time. My doctor said I was at the end of the line with conventional medicine, time for surgery. Surgery would mean a permanent ileostomy.

In all my years of UC, I’d hoped it would never come to this. A permanent bag attached to my abdomen collecting poo seemed like the worst thing next to death. I was out of choices though, so we (hubby, doc and I) began the process of surgeon hunting.

Surgeon was selected, insurance approval was in the works and now it was time to set a date. I felt like we should send “Save The Date” cards out, it was such an ordeal. Insurance came through with flying colors as I’m sure they were sick of forking out money for on going treatments and regular hospital visits. It was decided after many tears and prayers, September would be the BIG month of my transformation.

On September 12 I underwent surgery for removal of the colon and large intestine leaving me with a stoma and an ostomy bag. The surgery was a success and I went home with my new accessory.

I felt amazing, aside from the surgical site, I was pain and UC symptom free for the first time in many years! However, it was short-lived. I began to experience UC symptoms again and even though I no longer used my rectum to poo, I was having weird drainage and the urge to go constantly. So back to the surgeon I went.

It was determined that the inch or so left of my rectum had developed UC again and was in a big flare. The rectum must be removed and out it came on December 13, 2011. This surgery almost killed me, I was over medicated which stopped my breathing and resulted in a stay in ICU. I had a few other complications, one of which was an infection that developed in the surgery wound where my rectum was removed. I was allowed to go home a couple of days before Christmas with strict orders of doing nothing. Home health care was provided to continue care of the infection since I would be wearing a wound vacuum pump machine around the clock.

ostomy bag quote

The picture of my ostomy bag is a quote I found on the internet, (I don’t know who the author is) it reads: “A strong person a person who doesn’t cry. A strong person is one who cries and sheds tears and then gets up and fights again.” I like to stick stuff on my bag for motivation or just plain fun—as in the “Superostomy” picture.

Fast forward to March of 2012. I am finally released to begin living life again. At 39, I am being offered a do-over: a life with out the hold of UC. I decided right then and there I would live it to it’s fullest potential. My 40’s are going to be my best years yet.

Monnie wearing her ostomy

SuperOstomy to the rescue!

Where I’d like to be in 1 year:

I just ran my 1st ever 5K on September 29th, 2012. I have been training hard for this little 3 mile trek for the last three months. To say that I am over the moon with this goal completion is an understatement. I thought it would take me much longer than 12 weeks to check this goal off my list, but here I am–checked with permanent marker, no less!

So where would I like to be one year from now? I would like to be exactly where I am today: happy and healthy. I would love to have a few more goals checked off the list like, a half marathon, see my oldest son start college and watch my 2nd son play varsity football for his high school. Traveling with my hubby is also on the agenda. More than anything though, I just want to be happy, healthy and surrounded by the people I cherish most. I want to always be thankful for my 2nd chance and I want to continue living life abundantly. I want to share my experience so that others who find themselves in the long dark tunnel of disease can see the light at the the end. My ostomy was not the end of the world like I once feared, but the beginning of the voyage of a lifetime.

written by Monnie

submitted in the colitis venting area




19 Responses to The UC Road I Traveled

  1. Adam
    Adam October 2, 2012 at 10:46 pm #

    Monnie,

    Wow, pretty incredible story, and heck yeah for getting a race in already!! Super amazing and ten big pats on the back to you! Way cool to see you’ve got lots of goals to start checking off, and I’m sure you’ll tackle as many as you want in the near future. Super happy for you!
    -Adam

  2. Paul Willoughby October 3, 2012 at 3:58 am #

    Great story. Thanks for sharing!

    best wishes,
    Paul

  3. Dianna October 3, 2012 at 4:34 am #

    Your the best Monnie, I don’t know many people that I think could be as strong as you and tell about it.

  4. Suzan P. Jones October 3, 2012 at 5:55 am #

    You rock Monnie!!! What an inspiration you are to so many! Keep up the good work.

  5. Lila October 3, 2012 at 8:20 am #

    Thank you Monnie for sharing your experience. God walks with us through some pretty rough places so others can see how great He is.

  6. Jill
    Jill October 3, 2012 at 8:23 am #

    How awesome! I have my first j pouch surgery tomorow. You are so correct in calling out the dark tunnel of this disease. None of us want to lose our colon. not on my top 10 but getting to see my son play football, spoil the grandbabies and loved ones will be worth it! Would like the rash, back ache, fatique to go away. Does the hair come back also?

    ps. love the pics!!

    • Jill
      Jill October 3, 2012 at 8:23 am #

      why not a j pouch for you?

  7. Allison-3
    Allison October 3, 2012 at 10:11 am #

    Awesome Monnie!

    Allison

  8. Lisa OH
    Lisa October 3, 2012 at 10:20 am #

    Wow, Monnie. You are my hero! What an amazing story of survival. I love the photos you included. You look so strong and fearless. I also had to take the surgery route as my colon became toxic w/in 2 mos of being diagnosed (u can read the whole story here: http://lisakapp.blogspot.com/ ). Right now I’m btw the 2nd & 3rd j-pouch surgeries and am not missing my colon one bit! I had the same thing with my rectal stump – the colitis was going strong until it was removed during the 2nd surgery. Jill, I also lost a bunch of hair, was constantly fatigued and had a nasty rash. After being off all the meds and gaining weight, the rash went away & my hair started growing back. My energy returned after both my colon and rectum were gone. Now I feel great! Good luck w/surgery tomorrow, and Monnie, thank you for sharing your story. You are an inspiration!!!

    • Jill
      Jill October 4, 2012 at 4:39 pm #

      Ok don’t know how to say it but here it goes.. I went in for the final consult and was told they have news. The surgeon proceeded to tell me based on past fistula and current partial obstruction he was sniffing crohns as UC does not do that. MRI confirmed fistula still there and partial obstruction. He is calling crohns and cancelled the surgery. He already had talked to GI and they had more options with medicines now the diagnosis is crohns.

      GI says we will start cimzia and see how I respond. Since mayo is 9 hours from home he is going to find a GI dr at KU med center to work with. Back to the drawing board.

      I see now I was more ready than I thought to get the j pouch. To get the yuk out! I’m so glad you are free from the prison of UC and encouraging others. Happy healing and keep us posted!
      Jill

      • Monnie
        Monnie October 4, 2012 at 5:10 pm #

        Jill~ I am so sorry for your disappointment! So bummed for you and the thought you may be dealing with Chron’s.
        You asked earlier why I didn’t opt for the j-pouch, well- I was sick and tired of being in and out of the hospital and taking tons of medications. I researched the j-pouch extensively and decided my best option would be an ileostomy. I would have had to go to Dallas (6 hrs away) or Temple (9 hrs away) or possibly even Houston (12 hrs away) for the j-pouch surgeries and that didn’t sound fun at all. I was also worried about having complications with the j-pouch and then being hours away from a j-pouch specialist. I never do anything, I mean ANYTHING easy! I am always going to be the exception to the rule so I decided not to press my luck with more surgeries. I have NO regrets at all. My Ileostomy, though a big adjustment, has given me energy and freedom back. I consider a colon for that a fair trade.
        My prayers will be with you as you search out the solutions for the fistula.
        Check out my blog sometime when you’re bored… http://monnie-forwhatitsworth.blogspot.com/
        Blessings~~
        monnie

        • Jill
          Jill October 6, 2012 at 11:10 am #

          Monnie- I am jealous of your writting ability as I have been reading your blog! Reading is not a strong suit in my life but your blog plopped me in my chair for hours enjoying.
          I consider myself on the go. This has brought a little depression on..Jesus is my savior and know he will never forsake me. Someday being Gods kiddo through my faith in His son I will be an heir with you into a kingdom that has no disease! crohns/ colitis has no hold in an eternal perspective.. I will give myself permission for a few more days to process before calling the Dr.

          Mayo has been a blessing. The tests results, consults are all available online to review. It helps in processing..anyway my questions and thoughts for all those out there.. My disease colon activity in 10 years has never went above the lower 1/3 but is severe and non responsive. The rest of my colon is normal. I have no skip pattern. ct/ biopsies /colonoscopy reports I read all say no indications of crohns or displasia. mri showed the fistula that I didn’t know I still had. Remicade made that dissapear years ago atleast clinically. I expressed concern at the first visit on having to remove the whole colon, not just the bad part. uc you cant but crohns you can. I have powered through all treatment for UC and still in flare for a year now..The surgeon says he suspects/ believes its crohns then says there are more medical/ surgical options with crohns that doesn’t require removal of all the colon. All on fistula and obstruction…Do any of you UC’rs have them? The GI notes really thank the surgeon for his findings so we can pursue more options. Leaves my mind to wander as what I really have as the new treatments unfold and the insurance game. I have my colon for now and not so afraid cause I know the inevitable is coming. More drugs are available to me now. May a bit of remission come soon by the new meds. Cimzia is the next med I try..

          Thank you for reading and any thoughts appreciated
          Jill

          • Monnie
            Monnie October 7, 2012 at 7:13 am #

            Oh Jill, I can hear the frustration in you “voice” and I feel your pain. I do hope you will find relief through new drugs. I didn’t have any fistulas when I had my colon so I can’t relate to that experience, however, I can relate to the feeling of depression. Chronic illness is so hard on the mind.
            I am praying you will get the answers and treatment you need quick! Life is too short to spend it in doctor’s offices all the time!
            I had my entire colon and large intestine removed so my ileostomy stems from my small intestine. This cured my UC thankfully. I fought the idea of an ostomy for many years and now I wonder why. I think it must be a point you have to get to in order to accept the alteration to your body. It’s still sometimes hard but everyday that I feel better makes it easier.
            Thank you for your sweet words about my blog. It’s great therapy and cheaper than a professional with initials after their name…
            Because we live in a fallen world, we have to deal with crappy diseases–literally–but one day, we will be forever healed. I think I can appreciate that much more now.
            Keep fighting, you can do it!

    • Monnie
      Monnie October 4, 2012 at 5:20 pm #

      Lisa~ It took me a good year to become “strong and fearless”! Thank you for including your blog, I am always looking for others in the same boat. I pray your next surgery(s) are uneventful and you are back to living life abundantly. I also blog and I find it’s much cheaper than therapy. http://monnie-forwhatitsworth.blogspot.com/ That’s me, check it out sometime.
      I also had issues with hair loss. My eyelashes were almost nonexistent and the hair on my head thinned terribly. I struggled with skin issues as well as inflammation in my eyes of all places. The joint pain was the worst though, somedays I was hobbling around like a 90 year old woman. I will not miss much from those days!
      Blessings~
      monnie

  9. Princess PP October 3, 2012 at 3:43 pm #

    You are an inspiration! Great story! Thank you!

  10. shelly in maine October 3, 2012 at 4:08 pm #

    Monnie…you rock! :-) Best of luck in all your future endeavors. Thanks for sharing and inspiring. Shelly

  11. Bev October 3, 2012 at 4:12 pm #

    Oh you wonderful girl, you!! It must be the best thing ever to live again!!

    Fan-tabulous!

  12. Blake October 4, 2012 at 9:04 pm #

    Hell yeah Monnie! I think it was smart of you to just stick to the ostomy. I just got a J Pouch 6 weeks ago. I’m not saying I’d trade it back for my ostomy, but the 9 months I wore the ostomy were pretty damn good. I had a long debate with myself if I even wanted to continue with the J Pouch or stick with the ostomy. I chose J Pouch, but could of very easily stuck with the ostomy because I was used to it and liked the way I feel. Atleast you won’t have to endure more surgeries and experience butt burn or pouchitis ever in your life. Good for you, great story!

  13. Monnie
    Monnie October 7, 2012 at 7:14 am #

    Thank you everybody for your sweet and encouraging comments! I am blessed beyond measure and hope you are encouraged too.

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