Community Forum

Hello all,

My name is Megan and I have recently been diagnosed with Ulcerative Colitis. After struggling for 6 years to find a diagnosis or a treatment that helped my GI symptoms, I am relieved to finally have found a diagnosis that actually fits. The only problem, now that I am away at college, is that my doctor is a dinosaur. By this, I mean he is old. Which is not a problem. But his methods are also old as well. 

I have been seeing him for nearly a year and he has yet to ask a single question about my lifestyle, stress level, eating habits, etc. Now I am a HUGE supporter of lifestyle management for chronic illness. Every appointment I try to bring up my diet, how often I exercise, anything and he doesn't engage. There are no other GIs in the area, and I really am frustrated. I am currently taking Lialda, Canasa, Hydroxychloroquine, and VSL#3 to manage my symptoms (pretty mild right now, thank goodness) yet I really want to manage my illness through my lifestyle as well!!!

I know regular exercise is a huge factor in energy level (chronic fatigue is one of my most debilitating and constant symptoms), but I'm really interested in altering my diet. Can't afford a registered dietician and the internet has a million different suggestions so I am mainly curious:

What has worked for you, lifestyle-wise and diet-wise?

What type of disability resources were you able to get from your college?

How do you manage stress and college?

And also, how do you help others understand when you are tired all the time? My boyfriend (who handles my less-attractive symptoms like a champ) has a really hard time understanding how I can be so tired all the time. And frankly, so do I! 

Any advice is appreciated! Thanks guys 

-M

 Reply posted for kman484.

In my post below, I forgot to give the Web address of the Castle Connolly top doctors Web site:  http://www.castleconnolly.com/doctors/

 Reply posted for slugguts.

If you're not happy with your doctor, should get a second opinion about your treatment from another doctor--it would be easy to find another first-rate doctor in your vicinity who is both younger and concerned about lifestyle issues. Here's the easiest way to do this: go to the Castle Connolly Web site and give your ZIP code--under "Disease/Condition," scroll down to "inflammatory bowel disease" and choose that. You will get a list of the best GI docs in your area, as determined by extensive polling of medical professionals. GOOD LUCK!

 Reply posted for slugguts.

If you're not happy with your doctor, should get a second opinion about your treatment from another doctor--it would be easy to find another first-rate doctor in your vicinity who is both younger and concerned about lifestyle issues. Here's the easiest way to do this: go to the Castle Connolly Web site and give your ZIP code--under "Disease/Condition," scroll down to "inflammatory bowel disease" and choose that. You will get a list of the best GI docs in your area, as determined by extensive polling of medical professionals. GOOD LUCK!

 Reply posted for slugguts.

Hello Megan!

I have not had to alter my lifestyle that much since being diagnosed with UC other than: walking really slowly when I am having a flare-up, working out when I am not flaring up, and learning what foods work with my body. I also carry baby wipes with me incase a flare-up comes on out of the blue. Diet-wise, I avoid nuts and seeds (even the white seeds that come with ‘seedless’ watermelon) and I may have to cut corn from my diet too. I also drink unsweetened vanilla flavored almond milk and not cows milk (the almond milk tastes better in my opinion and does not contain an enzyme that may cause a flare-up). The best way to learn what foods work well with your body is by using a diet journal. With the journal, simply note what you eat and weather you experience symptoms (or if your symptoms get worse if you are flaring up).
 
I have not used disability services on my college campus…I would suggest getting in contact with the disability services office to see what types of accommodations can be made for you.
 
As far as managing stress and college go, I attend class as usual and when I am not feeling well or feeling rundown due to a flare-up, I don’t attend class and tell my professors I am not feeling well. Exercising and getting involved with on-campus clubs are ways I handle stress. I have also found it helpful to talk with someone (counseling services) if I am feeling really stressed or down.  
 
Being open and frank with people is the best way to get them to understand when you are tired all the time. I suggest telling them that you have UC, and your UC is flaring up. If people still don’t understand, tell them about ccfa.org (that way they can educate themselves).
 
I hope this information is useful! Best of luck at college; enjoy it while they last!
 
Peace,
Openears