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A glimmer of hope…

I was diagnosed with Ulcerative Colitis when I was 28 years old. It took about 2 years to get into remission but once I did, I was fairly stable. Unfortunately, stable meant constant weight fluctuations, diarrhea, abdominal cramps, and urgency to go the bathroom, but since I had heard such terrible stories of other people living with this illness, I came to realize that I was one of the lucky ones.

During a routine colonoscopy ten years later, my doctor told me that she was changing my diagnosis to Crohn’s Disease. She felt that I probably had Crohn’s all along but felt confident that at least for the time being, it wouldn’t actually change my treatment plan. I didn’t have a huge feeling about this change one way or another since my medications would be remaining the same. I continued on in my “remission”, although as stated before, I never actually felt very healthy, I just wasn’t going to the bathroom 20 times a day and bleeding, but I considered that a win. Six years later, I found a new doctor, only because she was close to my home and considered an IBD specialist, not because I wasn’t happy with the one that I had. When I first went to this new doctor, she wanted me to start fresh and complete all the fun, invasive tests we all know so well. After completely getting violated from top to bottom, she came to the conclusion I was probably misdiagnosed all these years and I most likely didn’t have IBD!

Well, I was thrilled to say the least. My first thought was “why the heck have I been on medications for 16 years if I didn’t have IBD”, but that quickly turned into “who cares….no more yearly colonoscopies; less risk for colon cancer; and no more daily medications!!” This was quite an exciting time for me and although everyone around me was very skeptical about this news, I jumped right into celebrating. I got off all my meds (with my doc’s blessing) and planned to monitor my health for the next 6 months. I had such a glimmer of hope. I started to imagine what my life would be like without this hanging over my head. To be able to make future plans without thinking of how my health might affect them. To not have to explain to new people how I am living with this chronic illness. To be able to start eating foods and alcoholic beverages that I’ve avoided for so long. Even to start taking Advil again! There were so many exciting possibilities!

With that though, came some unsettling thoughts that were popping into my head. The most notable was “who am I if I don’t have Crohn’s anymore?” The most problematic and worrisome thought was related to my job. I’m a psychotherapist with a private practice in Los Angeles, specializing in clients living with IBD, so who am I to have that specialty if I don’t even have that illness?? During this time, I had to watch myself question my identity, my future, my understanding of my body and countless other things that felt confusing to me. I had to start navigating my life with new rules and policies and although it was exciting, it also felt weird.

Sadly, it didn’t last long and that glimmer of hope disappeared around month 5. I started having such intense physical symptoms that I quickly realized that as much as I wanted my doc to be right, she was most definitely not and there was no question that I had been diagnosed correctly 16 years ago and had just been in a very stable remission these last many years. More violating and invasive tests later, all was confirmed and I did, in fact, have Crohn’s Disease. While I can’t say that I was happy to hear this news, there was something weirdly comforting in knowing that I know this illness, I know who I am with this illness, and I know who I am to my clients with this illness. So now, I can just continue on with my life in the way that I have been for the past 16 years, minus those 5 short, hope- filled, medication free, exciting months.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The InflammatoryBowelDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • thedancingcrohnie moderator
    3 months ago

    Thank you so much for sharing your story. What a roller coaster of a journey. Are you feeling better these days? Did you go back to the same treatment?

    I hope you are well and have been able to achieve remission again.

    Always dancing,
    Elizabeth (team member)

  • Amanda Osowski moderator
    4 months ago

    Oh man, your journey sounds so emotionally intense! I can’t imagine being told you have it, then that you didn’t, then that you really do! It took me 6.5 years of symptoms to get diagnosed, and even though the Crohn’s diagnosis was very validating, there was definitely a period of emotional processing and coping I had to do.

    I’m so glad you shared your story so others know they’re not alone!

    Warmly,
    Amanda (team member)

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