Great to finally start joining in on this forum. I've had IBD since I was 10 years old, although they suspect I had it earlier since I had erythema nodosum at diagnosis-usually a sign of years of flareups.
Anyway, the diagnosis then was UC. As a ten year old, it didn't really affect me. If you live with pain all your life, you don't know that its pain. But it affected my parents. I think they felt they were at blame and were bad parents because they couldn't take this away from me. I'm sure you parents on here understand that feeling. My parents obviously are great; they had no reason to feel this way.
For nine years, I went on 15 different medicines (can't even remember them all!) with long stints of prednisone, etc. None of it worked. Even remicade was a failure...well...let me clarify. I took it before it was FDA approved for UC. Thus, I only was given 3 injections before the insurance company pulled the plug on this therapy. I'm pretty sure insurance companies hate me! I'm a pretty expensive body!
Thus, come age 19, I withdrew from college to move 2000 miles back home and have a total colectomy. Hallelujah! That surgery was a miracle. Even 3 weeks after the surgery while I still had an ileostomy and was taking pain meds, I felt 1000 times better! And admittedly, a poop-bag on the side of your stomach is very convenient. I took four months to recover in which time I did my first 5k since again 10, climbed Mt. Hood and visited friends in New York! They reopened me to connect everything, remove the ileostomy and make an ileoanal reservoir (a fake large intestine using part of my ileum). I considered myself cured....
I graduated college, married my wonderful husband (for nonaffected husbands, my love got my heart by having "competitions" on who's number 2 had won...don't know what his rubric for grading was, but his humor always shows me love and acceptance.) and then got an abscess 4 months later. I called my GI doc who had me go to the ER. There, they diagnosed the abscess as a bartholin cyst. No biggy right? 2% of females get these in there lives and they should heal up quick. Well, after two years of this "bartholin cyst," my current OBGYN looked at is and says, "That's no bartholin cyst, that's a fistula. I think you have Crohn's."
So, as of Sept 17, I once again have IBD. For 5 years, I got to think I was cured, but no more. I now have fistulizing Crohn's with at least 2 fistulas and 1 abscess that drains. Apparently, this is not uncommon for patients with iloeanal reservoirs. They suspect they should have diagnosed me as Crohn's from the get go. I now am on Humira, which I'm still getting used to stabbing myself with a needle. I know I'm not a pin cushion like some people, but its still not fun.
As an adult, Crohn's is my disease while UC was my parents. I wasn't expecting to have this brought back in my life, but I believe it is how you approach your disease that defines your worth. I still feel 1000 times better than when I had UC. I'm blessed with an amazing husband who surprisingly is extremely cool with this all (well, minus the cetons threaded through fistulas down there....), and a motivation that I would never have had without my IBD. When I finish my master's I'm starting medical school in August to be...you got it!...A GI! I should get one acceptance letter today (at least I think so: my interviews went really well!), and am waiting on some more. Understandably I've had some great physicians influence my life.
Perhaps our disease is like Sisyphus, no end in sight. Or its like climbing to Mt. Hood' summit, where we will understand our full potential and reason for our disease. Until then, parents have hope for your children: their disease may be a blessing in disguise. And adults, may we all have courage to stay proud.
Anyway, the diagnosis then was UC. As a ten year old, it didn't really affect me. If you live with pain all your life, you don't know that its pain. But it affected my parents. I think they felt they were at blame and were bad parents because they couldn't take this away from me. I'm sure you parents on here understand that feeling. My parents obviously are great; they had no reason to feel this way.
For nine years, I went on 15 different medicines (can't even remember them all!) with long stints of prednisone, etc. None of it worked. Even remicade was a failure...well...let me clarify. I took it before it was FDA approved for UC. Thus, I only was given 3 injections before the insurance company pulled the plug on this therapy. I'm pretty sure insurance companies hate me! I'm a pretty expensive body!
Thus, come age 19, I withdrew from college to move 2000 miles back home and have a total colectomy. Hallelujah! That surgery was a miracle. Even 3 weeks after the surgery while I still had an ileostomy and was taking pain meds, I felt 1000 times better! And admittedly, a poop-bag on the side of your stomach is very convenient. I took four months to recover in which time I did my first 5k since again 10, climbed Mt. Hood and visited friends in New York! They reopened me to connect everything, remove the ileostomy and make an ileoanal reservoir (a fake large intestine using part of my ileum). I considered myself cured....
I graduated college, married my wonderful husband (for nonaffected husbands, my love got my heart by having "competitions" on who's number 2 had won...don't know what his rubric for grading was, but his humor always shows me love and acceptance.) and then got an abscess 4 months later. I called my GI doc who had me go to the ER. There, they diagnosed the abscess as a bartholin cyst. No biggy right? 2% of females get these in there lives and they should heal up quick. Well, after two years of this "bartholin cyst," my current OBGYN looked at is and says, "That's no bartholin cyst, that's a fistula. I think you have Crohn's."
So, as of Sept 17, I once again have IBD. For 5 years, I got to think I was cured, but no more. I now have fistulizing Crohn's with at least 2 fistulas and 1 abscess that drains. Apparently, this is not uncommon for patients with iloeanal reservoirs. They suspect they should have diagnosed me as Crohn's from the get go. I now am on Humira, which I'm still getting used to stabbing myself with a needle. I know I'm not a pin cushion like some people, but its still not fun.
As an adult, Crohn's is my disease while UC was my parents. I wasn't expecting to have this brought back in my life, but I believe it is how you approach your disease that defines your worth. I still feel 1000 times better than when I had UC. I'm blessed with an amazing husband who surprisingly is extremely cool with this all (well, minus the cetons threaded through fistulas down there....), and a motivation that I would never have had without my IBD. When I finish my master's I'm starting medical school in August to be...you got it!...A GI! I should get one acceptance letter today (at least I think so: my interviews went really well!), and am waiting on some more. Understandably I've had some great physicians influence my life.
Perhaps our disease is like Sisyphus, no end in sight. Or its like climbing to Mt. Hood' summit, where we will understand our full potential and reason for our disease. Until then, parents have hope for your children: their disease may be a blessing in disguise. And adults, may we all have courage to stay proud.
