Ask-the-Advocate: If You Could Make One Symptom Disappear...
Inflammatory bowel diseases, like Crohn's and UC, bring many unwanted symptoms - some that are visible, some that are not. And sometimes, it's not the obvious symptom that's the most impactful. So we asked our advocates:
If you can't cure IBD, but you could make one symptom disappear, which would it be?
Read their thoughts and be sure to share yours as well!
Response from Sara
The answer for me definitely depends on where my disease is at the time. In my most difficult times my answer would be the urgency, blood loss, and accidents. There was nothing more humiliating to me growing up and going through school and dating than having accidents and all of the mental games that Crohn's disease played on me because of those things. Right now, almost 9 years after having my colon removed, my worst symptom because of Crohn's disease is fatigue. I'd definitely make that disappear!
Response from Marisa
If I could make one IBD symptom disappear it would be the pain associated with blockages/obstructions. Having to worry about micromanaging my food so heavily in order to avoid that traumatic experience is detrimental to my quality of life. I would love if that was never even a thought or potential issue.
Response from Paul
Wow, this is a interesting question. I know that I would want all of the symptoms to disappear. But if I had to choose one, I would choose the amount of times the disease makes me go to the bathroom a day. I use the restroom twenty one to twenty six times daily. That’s a lot of time in the bathroom. It becomes very hard to go through my daily activities. I can deal with going to the bathroom a few more than “regular,” but something has to give.
Something that goes with the amount of time in the bathroom is the cost of toilet paper. It really adds up. I really think they should give Crohn’s patients free or discounted toilet paper. I must spend around sixty dollars a month on toilet paper. Now that is crazy.
Response from Courtney
One IBD "symptom" that I would like to make disappear is the food anxiety that may come with living with this disease. Before Crohn's, I LOVED to eat. I ate (mostly) anything and loved to cook Italian food with my family and eat out with my friends on the weekends. After Crohn's, a slow wave of anxiety came over me whenever I had to eat. I never knew what would intensify my symptoms, so making a choice of what to eat was a nerve wracking experience for me for a long time. I've since regained a positive relationship with food, but a slight feeling of worry in regards to food still hangs over my head at times when I'm feeling particularly anxious.
Response from Amber
I would have to say the bleeding. Not only because it causes problems, but also because it can be really, really scary. There have been days I wondered if I was actually going to bleed to death.
Will you help us understand the impact of Crohn's & colitis by taking the IBD In America Survey (US only)?