Advice for anyone with IBD.. Crohn's or Colitis

After having suffered for 3 years with IBD my advice to any poor soul stuck with this illness is as follows:

1) Get your family physician to push, push, push for an appointment with a good gastroenterogist. Don't let them make you wait (I waited while things worsened).
2) Get that flare under control right away. The worse the flare gets, the worse it will get. The next time it will be twice as bad. At least in my case.
3) Doctors don't understand these autoimmune illnesses well. If they can't help you at least request aggressive therapy or move to another doctor. This is kind of like #2.
4) Get a toilet installed in your car, if possible. This was a life saver for me and let me continue to live, somewhat normally for 8 more months... and avoid accidents.
5) This disease will mess with your understanding of cause and effect as seemingly disconnected things may cause a remission. Remember, the disease is lifelong and noone knows what causes a remission or a relapse. It could be that you saw an Armadillo on television one night and then suddenly the flare ceases. It's too hard to know what brings on a flare. That's why you have all sorts of studies that are contradictory. In all likelihood this is an autoimmune illness which is triggered by environmental and genetic interplays. Beware of snake oil salesmen who do business preying on people's hope.
6) Diet does matter, but not the way you'd expect. At a minimum, having food that doesn't cause gassiness will let you hold and keep in your medicinal enemas.
7) Stress worsens things as do certain irritant foods.
8) Prednisone is a life saver at first but the longer you use it, the worse you feel. And the less effective it will become. I became a diabetic from it, hopefully after surgery the blood glucose levels will normalize.
9) Beware of depression. Don't hide this from your support network (aka friends/family) if you can. It is a very hard to disease to cope with and you'll need all the support you can get. (take it from me, I strive to be an island)
10) You are not alone. Tap into the great online networks of others who have been through this.
11) Colonoscopies and sigmodoscopies while you flare really suck. Especially the prep. You could hear my cries throughout the hospital floor as they did the flexible sigmoidoscopy. There's already a chance of the scope rupturing the colon as it passes the sigmoid. Get a capable gastroenterologist and make sure they know how sore you are.
12) Get a bone density test as soon as you start on prednisone so you have a baseline to compare things to later on. Once you get your IBD under control you can try to get your Bone Mineral Density (BMD) back up there.
13) Take calcium citrate and vitamin D while you are on prednisone so you mitigate BMD loss.
14) Your eyesight may worsen while you are on prednisone.
15) Keep a journal of food intake, stress levels, exercise levels, and IBD symptoms so you can find out your own triggers. In my case every time I would exercise, 2 days later I would get a worsened flare up. It was like clockwork. I unfortunately had to learn to lighten up on the exercises. (On the other hand, my family member with the same illness can do rigorous exercise and has no trouble with it)
16) Keep Preparation H or similar handy. It really sucks to get hemmoroids from all the bathroom activity.
17) In case you can stay in remission, keep checking your colon (via colonoscopy) to ensure you did not develop colon cancer. By just having Ulcerative Colitis for a number of years, your risk apparently increases, even if you are in remission.
18) Colonoscopies take imperfect samples so make sure you go yearly to check for colon cancer. They also are known for missing things on the right side of the colon, moreso than on the left.
19) So important that it bears repeating: The worse the disease gets, the worse it gets. Stop it in it's tracks as early as you can.
20) This disease messes with your mental health as much as your physical health. It takes away control and predictability of basic body functions. Be gentle on yourself and seek mental health help if you become depressed due to the disease.
21) The prednisone may make you act in ways that are "not you". Warn your family members as it may make you paranoid, grumpy, etc.