It gets better and easier to deal with the more you learn about it. Read up on the medications used and talk to your doctor about short and long term treatment plans he or she has for you. If you are one to go in and out of remission, learn what changes to look for in your bm’s (or smell of your gas) that may indicate you are about to flare and get to the doctor right away or discuss a plan with your doctor where you can increase medications (like a mesalamine enema) at first sign of a flare.
Your family and friends will always seem to have a difficult time understanding what you're going through because from the outside you probably look healthy. There is more information about the disease I’ve noticed on television now then there used to be so that’s good. You’ll get better at traveling and going out as you get to know your body and how long you can last between bathroom breaks. At first you panic and that makes things worse, once you learn to make it past that initial spastic colon feeling you learn to be able to hold things in better. There are medications the doctor can prescribe (anti-spasmodics) that some find helpful to take as needed.
Everyone will want to give you advice on eating but get to know what foods may aggravate your problems and see if avoiding them helps. If your condition is mild inflammation you may find relief from some of the supplements folks speak of in here—I never did.
If anyone mentions avoiding gluten, wheat, grains then question that with educated research before giving it a try and ask your doctor about it (same thing with the Specific Carbo Diet or SCD), it doesn’t help unless you have an allergy to one of the foods you’re eliminating. If you try it I would talk to your doctor about it first. Your doctor also needs to know all supplements you are taking as those can sometimes be harmful and may interact with medications you are taking. Just because something is natural doesn't mean it's safe (posion ivey is natural).
Probiotics are good to add bur again tell you doctor about what you're doing.
You should be able to do most anything anyone else does but you have to plan bathroom visits. On vacation I wake up 1 hour before everyone else in order to have the bathroom free while I need it. I like to drive so I can have more control over quickly diverting to an emergency stop. If I cannot drive I make sure I am as empty as possible and have taken something (like Imodium) that will prevent me from having an accident (talk to your doctor about using drugs like that).
I’m 43 and was diagnosed at 18. I finished college, married, had two kids, take vacations, have a good job…I have been held back by UC (it’s not fun) but I am happy looking back. You’ll be just fine as long as you educate yourself about what you have like you’re doing.
Don't take it too bad..almost everyone has something sooner or later...you'll figure this out.
43, male, UC diagnosed in 1985
March 2009 colonoscopy showed no signs of UC; azathioprine reduce from 100mg to 50mg
Started current flare August 2009, bleeding by October 2009, hospital 12/9-12/15
Current Meds: 150 mg azathioprine, 60 mg prednisone, 750 mg Colazal 6/day, 400 mg Asacol 6/day, Rowasa enema nightly, VSL#3 DS, Lialda, started Remicade on 12/17/09
80 mg solumedrol; demoral, Dilaudid, oxycodone for pain, Zolfran for nausea
Tegretol XR and valium for epilespy