10 Things ... and other stuff

I recently read this article about someone else's experiences with IBD and thought you, my reader, might enjoy it too:

10 Things not to say to Someone with Ulcerative Colitis or Crohn’s

The other stuff are some other aspects of my experiences I thought were relevant:

• I can go from feeling perfectly normal to almost debilitating pain in as short as 15 minutes.
• When I feel good enough, I often do my best to act normal. When I don't feel good enough, I'll let you know.  If I do let you know, leave me alone, it will be best for both of us.
• Eating almost always causes me pain.
• Most of the time, my disease is less severe than others suffering from IBD. However, when mine is bad, I often spend a lot of time in a hospital.
• I can't ever take sick leave for colds because I never know when and how much time I'll need for my IBD symptoms.
• If you wish to know what IBD is like, imagine the worst stomach flu that you have ever had. I suffer from those symptoms 24 hours a day, 7 days a week, without a break.  Diarrhea, cramping, and nausea are constant problems for me.  On a good day, I have 5 bowel movements a day.  On a bad day I can have 9, 10, or more per day.  Those are just my gut issue.
• In addition to its direct symptoms, IBD causes many other problems.  My IBD gives me eye pain, psoriasis, joint pain, and kidney stones.  It puts me at risk for other skin, liver, kidney, pancreas, nervous system, immune, bone, and joint issues.  It also puts me at greatly increased risk for various cancers.
• I have scarring and on-going damage to my rectum that causes pain for every bowel movement.  I frequently pass blood in my stools.  My frequent bowel movements leave my rear-end very sore and raw.
• Don't try to make me feel guilty about not donating to your favorite/sponsored charity since you aren't willing to donate to mine.
• Don't think that your reading a recent article about IBD, inflammatory, or immune diseases means you know more about this than me.  I've spent the last 25 years reading about it, its treatment, its medications, and its research.  If you've heard about some new therapy, it's very likely I knew about it 5 years ago when it was in clinical trials (this includes treatment with marijuana).
• Don't argue with me about the causes of this disease.  Your idle speculation is unlikely to change the course of medical science during our casual dinner conversation.  I'll be polite and not say this to your face, but it makes you look like an ignorant jerk.
• Don't lecture or judge me on my diet.  I eat a diet approved by my physician and calculated to cause me the least distress.  I have to worry about every bite of salad and whether it will put me in the hospital requiring major surgery.
• Don't lecture me about my unwillingness to take necessary medications.  I have taken medication every day of my life for the last 25 years.  I haven't missed a single dose of any of my prescribed medicines in more than 6 months.  I almost always follow my doctors orders and when I fail to do so, I always let him know.
• Most of my medicines do not make me feel better, they make my symptoms worse.  I take them to limit the damage that my disease does to my body, despite the discomfort they cause.
• (This is directed at my health insurance company) Don't lecture me about my weight.  I ignore my BMI on purpose.  When I suffer from bowel obstructions, I must go for days without eating anything.  When I am able to put on some extra weight, I do so on purpose.  My extra weight comes in handy when I (not infrequently) can't eat.
• If I tell you that I'm not hungry and don't want to eat, it's usually because I either hurt too much to eat or I'm nauseated.  In either case at that point in time, the thought of eating is repulsive.  Please just let me be.