Gaining back control of my life....

Hi Everyone.

I just joined this site and wanted to come share my story. I was diagnosed with 'severe' Ulcerative Colitis during my first semester of exams, first year of University (I was 18). Basically, my entire large intestine is affected when I flare up. I was treated with Pentasa and Prednisone, and was pretty much on them for 3 years, with the exception of being tapered off the prednisone for a month or two, and then having to start taking it again because of another flare. Around that point I started taking azathioprine (Imuran) and have been taking 175mg a day since. Even while taking the Imuran, I've had to take prednisone at least every 6 months until last June. I'm in remission for the first time since being diagnosed 6 years ago (I'm 24 now), though I still take Imuran. Very unfortunately for me, I developed Cushing's Syndrome immediately after every bout with prednisone, and among side effects I've gained more than 60 lbs (I'm about 50lbs overweight now), had severe abdominal striae appear (my tummy is basically a stretch mark), developed severe facial acne (being treated with minocycline) developed GERD (taking pariet), and had a notable drop in my libido (working on that one). I'm just for the first time starting to take control back of my life, I finished University (BSc Biology from Dalhousie University), was offered a full-time job (with health insurance to boot), and am trying to eat as much fibre (since I go for long periods on a low-residue diet), fruits, vegetables, and organic food as I can, and am starting to exercise again. I was an athlete in school, but I just feel like (perhaps partially due to my iron levels and weight gain) that I have NO energy, and life just feels very heavy sometimes. I sleep 8-9 hours per night, and I don't feel like it's enough.
I just blabbed a lot....I just don't really know anyone else in the same situation, and find it hard to talk to other people because I don't look sick...I feel like people don't really understand how hard it can be to live with IBD and feel sick most of the time but look completely healthy. I'd love to hear about people who have been on this track for a long time and tips to gain control back of my life and take it away from my disease.

THanks for listening!

Welcome to the Chron's forum Katiee J - I'm a newbie also and found that introducing myself one time and then looking around at the threads gave me a sense of comfort and belonging. I wish you all the best my sister -

Hi, Katie! Welcome! I am so happy that you are starting to get your feet back on the ground, but I'm so sorry it was such a battle! And I'm so glad you're here to encourage the rest of us! I hope you continue getting better every day. Congratulations on your new job!

-PS, I know what you mean when you say you don't look sick. When I was in the worse of it, people thought I was dying. But now that I've gained the weight back, got the color in my face back, and can finally walk upright again, people just don't realize how bad it can be. That's why we're here.

Hi Katie and welcome.

Even my GI says I look fantastic when I visit him! I understand what you're saying about "looking good" but feeling, well just lotsa pain with a bit of mental anguish mixed in. Any more, I just say God bless 'em - if they say I look good, it's a compliment and I'll take it.

I saw a girl I hadn't seen in a few years and she said "you're looking good." I said thank you. And she said "no...I mean REALLY good!" Crohn's disease has made me look better than I ever looked in my life. Go figure?

With me, I have a bad "Overdo it" switch" and it's taken me years to learn how to stop over-exerting myself. I still do it now, but I'm getting a better feel for it. Actually it;s not a "feel", it's either looking at the clock or doing specific numbers or repetitions. I don't add anything new for a month which is really hard because I really really really want to build my pecs and abs. But guess what?

I have Crohn's disease! I also have a brand newly replaced knee. That means all my available energy must go into working out my stance and BOTH legs, my calfs, my quads, my gait - everything where I already have a pretty decent amout of muscle. It also means NO PEC's and NO ABS for 3-6 months no matter how much I want them. I also wear out quick, too.

So for that act, I walk every day almost the same distance, then add a little more. Fortunately for me, Physical Therapy has been mandatory. The PT's don't want to hear my knee hurts more today than yesterday. They don't want to hear I feel fatigued. They'll just say "that's because you have Crohn's disease, now go walk up and down this stairway. Lets see if we can make a full landing." (these were EXACT words)

All this for my big "lessons learned". I can't do as much as I believe deep down in my soul that I can. Just look at the clock and count the reps - then stop. Even if you feel like you can do more.

I also make it a point to do something to make my life and surroundings beautiful each and every day. It might only be hanging one picture that I've been wanting to hang for awhile. After several years of doing this, it becomes discipline and a habit. Self-discipline will lead a person to self-love. With this disease, I don't think we can get too much of that.

Good luck and welcome!