If you don’t DO, you can’t KNOW

It wasn’t for months after someone told me I needed to be in experimental mode while I figure out what direction I want my life to go in, that I finally understood how necessary that was for me. I worked four days last week and by late in the day Friday, all I wanted to do was cry. And I did once I got in the car.

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I think the reality is hitting me that I probably won’t be able to handle a full time job. It’s a completely different mindset than I always had because I figured that once I had some sustained health and was as healthy as possible, I would be able to work the way I always anticipated.

I am (knock on wood) the healthiest I have ever been. I am at the healthiest weight I’ve been in about ten years. I have accepted and adjusted to the fact that I live with an ostomy. I am more comfortable with who I am. I have had some distance since my last hospitalization and surgery. In my mind, this is truly the healthiest I can ever hope to be.

And I am okay with that.

I just always assumed that once I had some emotional distance from what has happened to me, and had time to regain so much of the physical strength I lost, that I would be able to go about my merry way never looking back.

That isn’t true though. As I wrote in this post here, I am slowly starting to see that I am not and never will be the way I was prior to being diagnosed with ulcerative colitis. I didn’t eat the entire day while I was working and still ended up in the bathroom six times before 10am… not exaggerating, I actually counted. Then as I became a dare devil and had some water, it was as if all hell broke loose.  I even had *gasp* vitamin water which caused my ostomy to make so many noises that it wasn’t worth sipping on anymore.

I have become a lot more comfortable eating out and being alright if I have to get up and use the restroom a ridiculous amount. I have come to terms with the fact that most of the time, people are too focused on themselves to worry about my bathroom habits. But when I am working and need to be able to be productive, I can’t live in the bathroom. I can’t be thinking about the noises coming from my stomach all of the time or if my filled up bag is noticeable either. I need to be able to concentrate on what I have to do and engage with the people I am with free from GI distractions.

I know every IBD and ostomy patient is different but I am curious: On your average day, how often do you go to the bathroom or empty your ostomy?

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10 Responses

  1. For me, an average day when I’m not in a major flare is 6-8 times. (I’ve never gotten into remission, but there are less flare-y times.) During a major flare, I don’t even want to count–sometimes it’s every ten minutes, and sometimes I literally have to stay on the toilet for hours.

  2. Sadly, 20-30 times a day. I have tried it all. I was a teacher, and am now on disability. I am now- to be honest- very bitter about it. It was like my last little bit of independence was taken from me when I couldn’t work anymore. At the same time I am grateful because after ten years of illness, I simply COULDN’T do it anymore. My body just couldn’t do it. Makes me sad, every single day, and I am working hard at changing my attitude and outlook.

    • Ugh Jennifer! It’s sooo frustrating, upsetting, infuriating and everything else you just said. It’s a huge deal to even attempt to accomplish some of your dreams. You aren’t alone. It’s really hard :(

  3. I empty my pouch 5-7 a day, but there are some hidden notes here:

    1) I’ll often empty once at night and then in the early morning. Both times my pouch will be quite full. If I followed the “empty before it’s 1/3 full” rule, then I’d be emptying 4 times throughout the night only and maybe an extra 2-3 times during the day.

    2) I usually eat one regular size meal and 1-2 small meals – much less than I’d like to. If I ate 3 regular meals and 2 snacks (like most “normal” people), then I’d be emptying far more frequently.

    With active Crohn’s I was going 10-20+ times a day and they were unpredictable and urgent. My ostomy at least solves the urgency problem, but it’s far from “normal” or ideal.

    • I should really count the entire day. I’m always curious about other ostomates. Thanks so much for sharing!

  4. Can’t answer your question, but let you know How happy I am that you are “out there” and continue to keep trying. I hope you do find a situation that really works for you.

  5. Marisa I idolize you so much, & yeah being a spoonie sucks sometimes, but we always gotta remember that thats exactly what we are. I like to think it makes us more special, because we really do have to have the time management and save our spoons for the most worthwhile stuff. Faith > fear, ALWAYS.

    • Nina, you are sooo sweet!! I idolize all of you guys! You make me feel strong and let me know every single day that I’m not alone. <3 you girl!

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