General questions about dealing with UC from experienced people...

     My GI doctor put me on FloraQ (probiotic) while I was hospitalized last year.  When I was discharged I went to a nutritionist and she suggested Powerdophilus by Country Life.  I take two a day with food and I also take a fish oil capsule.  The Flora Q is now sold over the counter and costs a lot.

     Do you watch your diet?  It's best to stick to a low residue diet while flaring.

Luckily I've flared badly in the summer so far, otherwise I'd have no idea how to handle classes. Just try to do your best and don't stress yourself out. Sorry I can't give any more advice than that. When you go to college, register with your college's disability services; they'll help with housing, talking to professors, etc.

3. Lack of bleeding usually does signal remission. Remission and the timing of remission different for different people, but generally it's being close to what you were pre-UC. For me, that means no blood, a couple BMs per day, no urgency, etc.

4. Don't push yourself to exercise too much if you're feeling weak and flaring. On a good day, you could try a little cardio and/or weights. And then move on up to your regular routine once you reach remission.

5. It's hard to deal with emotionally for sure. I had this disease for almost a year and half and some days still have time accepting it. I have not told any of my friends about it; they just know I have a chronic autoimmune disease. I really don't feel like going into details about this disease for obvious reasons. Don't worry about what your coaches will think or letting down your team--you have to take care of your health first!

There have been studies that show fish oil and especially probiotics can help with UC symptoms, so they're definitely worth a shot. What brand of probiotics are you on? I'm not completely sure about digestive enzymes or prebiotics (maybe someone else will chime in). I've refused steroids as well, but definitely ask about rectal meds. I know that they're embarrassing, but they do help!

1. Have you had your adrenal functions tested? Are you anemic? Have you been tested for mono or any other causes of extreme fatigue? If not, I'd discuss with your doctor.

2. Bad flares can make you fatigued. Once you've ruled out other possibilities, you'll just have to be patient with yourself and rest as much as you can. Your energy level will improve as your colon starts to heal and digestion/assimilation improves.

3. Stopping the bleeding is certainly a sign you're moving in the right direction. OTOH, I wouldn't call lack of bleeding "remission." As long as you're having cramps, gas, mucous and diarrhea, you're not in remission.

4. As you're already thin and have lost weight, you don't need lots of strenous cardio. Twenty to thirty minutes of walking three or four days a week would be sufficient for general health and well-being. Instead, your primary focus should be weight training in order to replace lost muscle and regain healthy weight. Even at my sickest, I was able to do moderate, free weight workouts. Yoga may also be helpful to increase flexibility and reduce stress.

5. I found I had to set everything aside while I concentrated on healing myself and achieving remission. No one wants to give up their normal activities and outings, but you must make your health your top priority. You'll only make your symptoms worse if you continue pushing yourself. Once you're in remission, you'll be able to return to some, if not all, of your previous activities. A few sessions with a counselor who specializes in working with folks with chronic disease may help.

My daughter was diagnosed in her sophomore year of high school. She was out of school for 9 weeks that October/November. Then she went into remission. Another flare around the same time in her junior year. Another 9 weeks out of school. Then she flared in the spring of junior year. Out for 7 weeks then. Every time she was in a flare, her energy level and attention span went out the window. In fact she became very, very good at Minesweeper on the computer during her first flare!

Here in the US, there is something called a 504 plan. That is a disability plan that is agreed upon by the school district and the parents. In my daughter's case, it allowed her unlimited bathroom trips, food and drink at any time, extended time on tests as needed, etc. She rarely used this but having it is like a safety net. We also chose to let all her teachers know about her UC. She was able to get some of her work by email to keep up with her classes. I think by being open and honest with the teachers it helped because they had a bit more sympathy (empathy). I contacted the teachers myself at first. She followed up once they were on board with what was happening.

My daughter isn't involved in sports but is very involved in the music department at school. The UC was tough. She had to drop out of the pit for the school musical. She couldn't commit to the symphonic orchestra. Some of the other groups she is in worked with her and she was able to come back as she felt better. Even though she is now healthy, we can see what the 2 years of being sick has done. She lost some of her edge and should be at a level of 1st or 2nd chair. She is not there. And you can't fault the teacher for wanting the strongest kids in those chairs.

Don't be so hard on yourself. You've been dealt a raw deal with the UC. What should be the fun school years are marred with never knowing if you'll continue to feel well or continue to feel sick.

As for friends, the true ones will be there through it all. Most of my daughter's friends know about the UC. They know about her surgeries. Her attitude has been that the UC is (was) a part of her life but it wasn't going to become her life.

Feel better soon.