Becky's page

Hi, welcome to the best crohns support group on the net.  My name is Becky.  I'm here to tell you there can be life with this disease.

I started with symptoms but not diagnosed when I was a teenager.  All these things clicked when I finally found out what I had.  During my teens I went into remission for almost 10 years.  During that time I got married, had two children, received higher education, got sick again when I was in my mid 20s. Still no diagnosis.  Remember, this is all in our head.  After some time I went in to another remission for about 15 years.  My entire life I was so thin, sickly looking.

It wasn't until I was in my late 30's that I got sick again and boy did I get sick.  My family doctor at that time wasn't much help.  We tried everything known to man to cure my "stomach problems".  Finally he sent me to a specialist who "didn't expect any problems" but did a colonscopy just to be sure.  He said my colon, big and small were one of the worst he'd seen and immediately started me on a round of crohns medications, Pentasa.  I worked my way up to the maximum dosage that never did work.

I'm one of those wonderful type cases that doesn't repond to conventional treatments.  All my labs continuely come in normal no matter how sick I may be.  We continuely changed medications to find something to bring this under control to no avail.  Steroids didn't help either.  So eventually my specialist just scratched his head and said that I was in remission and just suffering from IBS, that my pain tolerance must be different from others. 

Well, blood, weight loss, all the things that go with this disease, hospitalizations, that's not IBS.   I just couldn't convince him that something was wrong.  He was very caring, giving me the medications I asked for, test after normal test but still we weren't getting anywhere.

I was missing an average of 2 work days a week, still losing weight so he sent me to a wonderful surgeon who saved my life.  Rather than do surgery, looking for something that she still didn't know what she would be looking for (basically he just wanted her to cut me open and look around on the outsides, something a scope doesn't see), I convinced her to talk to him.  I wanted Remicade.  What did I have to lose?  I already had all the side effects and so what about the long term, down the road problems?  I wanted quality of life NOW.  What's the point of living another 30 years if they're crap ones?  I'd rather live 10 quality years now then spend the rest of my life sick, not being able to live.  I'm too young for that.

So, in June 2001 I had my first remicade treatment and I could feel myself healing/feeling better as it dripped into my arm.  I immediately went in to remission and had my first solid stool in as long as I could remember.  (No

topics are taboo for us crohnies).

I'm not here to tout the benefits of remicade.  I just am lettting you know that with trial and error, a kind, caring, listening doctor, that remission and some quality of life can be found no matter how long, how many pounds you've lost.  No matter how sick you may be, never give up.  I almost did and I'm glad now I didn't.  I'm in my 10th month of remission and I've packed more living into those past 10 months that I've had in the last 5 years.

I may get really sick again someday.  The remicade may quit working but I don't regret anything I've done.

If you or someone you love has crohns or what you think may be crohns, post on the board.  You'll get answers to every situation, every complication, every medication, every lifestyle problem.  You'll have some laughs, shed some tears BUT you'll NEVER find a better support group anywhere.  These people are my second family.  Your biological family / and or co-workers may not understand your problems.  Remember, there's nothing really wrong with you, it's either all in your head, you just want to be sick, just want sympathy, want the attention, don't pray hard enough, something. 

We're here to tell you this is real.   I'm fortunate.  My husband and children have been there right by my side through thick and thin.  Sickeness, hospitalizations, tests, they've seen it all and I still have them.  So, ask us, post your questions, fears, concerns AND happy moments.  You're soon to find out, crohnies are the BEST people in the world.

Bec