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I was diagnosed with Ulcerative Colitis in May of 2009…approximately 3 weeks before a 1200 mile road trip that I had planned months earlier. This trip was a reunion with some of my favorite friends and I was going to do all of the driving with my boyfriend. Oh did I mention we had planned to hit 4 amusement parks on the way there and back? I remember a few weeks before this trip and a few days after diagnosis writing my boyfriend an email telling him about my diagnosis because I was too mortified to tell him in person. I just went back and reread it. It was heartbreaking. I was so embarrassed and humiliated having to tell him what I considered to be very private details at that time.

I continued with this overwhelming embarrassment for roughly the next year. I decided to go on that road trip, and got really sick at the tail end and instead of hitting roller coasters, I was puking in a Starbucks bathroom. When we got home, my hospitalizations started, and it was there in a hospital bed that I finally told my parents of my diagnosis. It was also there, that I made them promise me they would NOT tell any other member of our family about my disease. I just couldn’t handle the embarrassment. I couldn’t handle everyone knowing I had an ass disease. I continued to be in and out of the hospital for the next 6 months or so, sometimes just weekly ER visits and other times week long hospital stays. Each time, I made my immediate family members lie to our extended family about why I need help caring for my house/dogs while I was gone. I’m sure it looked like I was on “vacation” a lot during that that time.

While I started being a regular at the E.R, I also started to balloon up on steroids, miss days from my job and slowly realize that my medications were not working. I had a heart surgery around this time, which was caused by an adverse reaction to Asacol. Even then, while in the cardiac ICU unit at the hospital, I still made my family promise not to tell anyone.

By January of 2010, my GI had given up on me and sent me to Cleveland to see a GI there. That GI told me to start thinking about surgery. This is right around the time that I started my blog Blood, Poop and Tears. Looking back, I’m not really sure why I started it. I think I know, but I really just think I needed a place to scream into the world. I needed a place to think aloud without causing stress on my family.

Little did I know that my blog would be the gateway drug to my happiness. My blog documents my whole UC journey from pre-surgery until today and when I look back over that time there is one thing that stands out the most. My attitude. Somewhere during that process I went from hiding in embarrassment, to walking the streets of Chicago telling perfect strangers about my ass disease and doing it with a smile. I started being a counselor for Camp Oasis, teaching those kids its ok to have IBD, while teaching myself the same thing. Somewhere deep into this journey, I stopped being ashamed, and started being proud and that simple process of changing my attitude has changed lives.

I can’t explain what the exact moment was, or what the exact catalyst was, but something in me changed when I started telling my story to strangers on the internet. I found people who understood. People that could give me advice and people who later started asking me for my advice. I realized…I had a voice. And now here I am, a powerful voice for the IBD community (at least that’s what I tell myself!). Through my blogs, networking and now on Girls With Guts, I get to tell my story, other people’s stories and hopefully be a source of information and hope. I realized the importance of advocacy and awareness now because none of us would be so mortified of IBD if there was more awareness about this disease. Once I started to tell my story, I realized I could make this journey easier for others. When I was diagnosed I was hidden in the back corner of the IBD closet and now I am out with a megaphone telling every willing ear about IBD, my jpouch, the details of my inner plumbing and our amazing community of people.

I urge you ladies to tell your stories. I know the embarrassment and shame that goes along with IBD, but I swear, telling your stories is the first step to acceptance and also your door to helping someone else. There is no reason to tackle IBD alone! My mission in life is to help other IBD patients. It is my passion and a labor of love. And it all started when I stopped being afraid to tell my story.

 

Shalana’s Story: There IS Light at the End of the Tunnel Kirbi’s Advice for Parents of a Child with IBD

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  1. Erin Louise says:

    This was so touching, even for a non-IBDer. Thanks for sharing, Jackie.

  2. Carol says:

    So great!!

  3. […] where I decided to tell a group of strangers about my colitis. Amazing things can happen when you tell your stories. Just think of all of the inspiring people who you have yet to […]

  4. kerriann clark says:

    That was amazing to read and I felt your embaressment and then your freedom but I am not totally free yet. I still hide my ostomy to all except certain friends and all my family know. I started out wanting to scream it from the rooftops but then it deciced to stop working like the amazing intestine that coulod!!!!!!!!! I will tell my story in time, sooner than later. Thank you for yours!!!!!

  5. jenna fleming says:

    its nice to hear that we are not alone. I was told I had ibs after having my first daughter 6 years ago without any tests. I was struggling on all differnt medication extreme stomach cramps and alternating between diarehha and constipation, whilst looking after my baby. I fell pregnant again 4 years later and had no symptoms the whole pregnancy . but after I had my baby the symptoms come back with revenge. I was taking 8 buscopan tablets a day and I lost loads of weight finally after 6 years my doctor referred me to a specialist. I had an endoscopy and colonoscopy and other test he put me on pentasa whilst taking my buscopan which helped with flare ups now and again. then we decided to have our final child whilst my pains was in remission the doctor said I have a form of ibd but not sure which one it is. the first few weeks I had a little flare up . then for 2 months I was in remission eating what I liked and it was lovley not having and cramps or rushing to the bathroom. I found out I had twins but I lost one . a few weeks later I had severe cramping and lost loads of blood and my ibd came back stronger and I was in agnoy with diarehha and I felt so low and scared at that point I felt like I couldnt breath and sucide thoughts came into my head but I couldnt because if my beautiful children and family. I went to the doctors for a scan and she said it was the twin coming out but the other baby is fine. and while this is happing its making your ibd worse, so she put me on steriod tablets im on my second day but having severe diarehha I dont know if its going to work if anyone has fousedsteriods has anyone got any info or advice to share. im now 27 years old have been living with this for 6 years and its so hard and we have to stay positive we have to hope that there will bd a cure ond day x

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