UC to J-Pouch Story

Sarah’s Permanent Ileostomy

Posted by sarahbiggart on December 28, 2008

My Ostomy Story

 

 

 

My Story begins in February of 2000, 3 days before my Husband and I were to leave on a 7-day Mexican Cruise celebrating our first year of Marriage. We attended a Birthday Party that night at a local Mexican restaurant and I had to leave the table over and over again with terrible diarrhea, just nerves about the cruise I told myself. The cruise was wonderful, but the diarrhea continued and I was pounding extra-strength Pepto the entire time, it did not help at all, just the foods I am not used to eating I told myself. Back at home the painful cramps and diarrhea were still bothering me and a trip to the doctor was met with “Well, you were in Mexico” It started before we even left I explained in vain. Multiple ER visits for dehydration and visits to GI specialists followed, stool samples were given, blood was taken and finally a colonoscopy gave me an Ulcerative Colitis diagnosis 3 months later, I was 23, newly married, and very sick.

 

Over the next 5 years I tried multiple medications, Prednisone, Immuran, Asacol, Lomitil, Rowasa enemas, nothing gave me relief. Also over those 5 years I had a child, though advised not to, and continued working, I run a group home caring for developmentally disabled adults. But pooping my pants in public and paranoia that surrounded being in public and begun to take their toll, I was not the happy person I once was, the UC was controlling my life, as much as I tried not to let it, I had become it’s prisoner.

 

In June of 2004 I had another Colonoscopy, I had been doing some research and had learned about j-pouches. In my groggy state during the colonoscopy I remember looking on the monitor and seeing my colon, it was a bloody, pus filled ulcerated mess, my insides were rotting inside of me, I told my GI right then and there that it needed to come out. I found a CR surgeon that I liked and scheduled a 3 step, possible 2 step j-pouch surgery for September 24, 2004. I woke up with a total proctocolectomy, rectum and colon removed, no j-pouch formed, my rectal stump (anus) intact, and an end ileostomy…A BAG!

 

I never went back and had the j-pouch done, as I came to the realization as I lay in Hospital recovering, I was laying in the Hospital recovering, I was not jumping up to use the bathroom. My recovery was not easy, I had some complications, but once I got back on track, I felt my old self, my true self returning. I was able to be the Mother my son deserved and needed, and the Woman my Husband had married in the first place. Yeah, I had a bag hanging from my belly…so what? At least I could sit through a movie, wait in a line, and hold my sleeping child in my arms, things that were not possible for me before.

 

 

One of the things that also has helped me on my journey has been my involvement with the UOAA, it started when I heard about the 2005 National Conference to be held in Anaheim, CA. Since Anaheim is only about 90 minutes from our front door, I decided that my Husband and I should attend, it will be good for us I thought, and we would probably never go again.  Well that Conference was a life changer for me, I already was confident and secure with my ostomy, but did feel alone.  Walking into a room with hundreds of other ostomates, and specifically about 75 other Young Adults with ostomies was one of the most empowering moments of my life, and really changed the course of my life, it gave me a new focus.

 

Since then I have become the Vice President of the Ostomy Association of San Diego, and continue to serve in that position, traveled to Irvine, CA, Chicago, IL and Cleveland, OH twice for UOAA (United Ostomy Associations of America; www.uoaa.org) and YODAA (Young Ostomate and diversion Alliance of America; www.yodaa.org) Conferences, and plan on attending the UOAA’s 2009 National Conference in New Orleans, LA. This past summer I was a volunteer Counselor for Youth Rally (www.rally4youth.org) a Summer camp for kids 11-17 with ostomies, diversions, IBD and bowel and bladder incontinence. I always look forward to spending time with my “second family” the people that I have met along my journey. We all share an instant bond and connection, we have walked similar roads and understand what the other has been though, you won’t find pity, but you will receive support, love and understanding.

 

Looking back, of course I wish I never got sick and would never want to have an ostomy, but this is the path my life has taken. I choose to find positives and lessons in everything, and make it my mission to reach out to other people helping them find acceptance and happiness with their ostomies just as I have.  I feel that support is very important, when it comes to ostomies you have to seek it out, you would never know another person on the street has an ostomy or diversion, so using the internet and support groups is a wonderful resource and I encourage everyone to learn more, whether at a local support group meeting or online on the wonderful discussions boards available, especially at http://www.uoaa.org.

 

As for me, I continue to run the group home, my son, Hendrix just started Kindergarten, and my Husband and I are about to celebrate our 10 year wedding anniversary. I continue to have great adventures and good times, we have traveled, my son and I take Kung-fu, I swim, snorkel, ride my bike and live a happy and active life. My ostomy does not hold me back; it has given me back the life I always wanted.

Hiking with my Family on the Road to Hana

Hiking with my Family on the Road to Hana

 

 

 

 

 

 

 

 

 

 

 

 

 

 Me, swimming in Maui, HI

Me, swimming in Maui, HI

 

 

 

 

 

 

 

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7 Responses to “Sarah’s Permanent Ileostomy”

  1. Erica said

    Wow, Sarah! You have such an incredible attitude and outlook on things, especially having a perm ileo, thanks for sharing your story. Do you know why Jodi from Road Rules has a jpouch? Did she have UC or something else? I used to watch her on that show and had NO IDEA she was “special”.

    Take care,
    erica

  2. Sarah B said

    Yes, Jodi had a UC diagnosis.
    Goes to show…we are EVERYWHERE :)

  3. Marianne said

    Sarah,
    You have a wonderful attitude that is quite inspiring! I am positive as well but it has definetely not been easy; sometimes I do get sad. I had the same surgery subtotal colectomyover 2 months ago(1 of a possible 3 step) and contemplating to go ahead with the J-Pouch surgery but still hesitating as I was so very sick having spent about 2 and half months in the hospital and somehow do not want to go back to the hospital and endure more recoveries and possible complications. You have chosen to have it permanent; what was the reason behind this if I may ask?
    Marianne

  4. Megan said

    Hi Sarah,

    Just like Marianne asked about why you choose the perm ileo instead of going through with the jpouch is such a great question. That question is one of hte biggest ones asked on the blog and on jpouch.org when people are in the temp ileo phase and wondering whether or not they should proceed with the jpouch. Most of the advice I see is that people say try for the jpouch and if it doesn’t work out then go back to a perm ileo. But in your case you didn’t want to risk the jpouch not working becuase you didn’t want to take any more time out of your life risking being sick?

    Megan

  5. Eric said

    You know, my thoughts were just along those very lines: if it doesn’t work, I can always go back. But that would mean a total of 3-4 surgeries for most people, 5 for me. Every time you go in for surgery, there is always the chance that you won’t survive the surgery, however small a chance that is. I still did it, because I wanted to roll over onto my stomach and not worry. I also am a skier, and I take tumbles off of cliffs that would loosen even the best belt/ostomy bag combination. I, too, am curious why Sarah chose permanent. But, please don’t get the wrong idea from our questions, we are in NO WAY in favor of one lifestyle over another. Whatever allows you to get your life back is the way to go!

  6. Megan said

    Eric, thanks for saying that we are not in favor of one way or other b/c it is definately the individuals choice. It is a great discussion to have though b/c it seems everyone having the colectomy and making that decision for jpouch or perm ileo has to weigh the options and hearing all sides is so important.

  7. Sarah B said

    I still have my rectal stump, it needs to be removed, the CR surgeon left it so he did not make the choice for me. My rectal stump/anus, still gives me problems, I have severe proctitis and still bleed, have some pain and leak mucous at night, and some times when exerting myself and forgetting to clinch…
    Therefore, I feel if un-connected I am having these issues, then connected, it would be worse, my diagnosis is still UC though.
    I hope that answers your questions, if you have anymore I more than happy to answer them as openly and as honestly as possible.
    I wish each and everyone of you well, in whatever course of treatment you choose…

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