Posted 10/19/2012 1:52 AM (GMT 0)
Hey, JK. I was diagnosed early this year (January 8). I've dealt with IBS symptoms for as long as I can remember, but I apparently had never had a severe flare up. We figure from the damage that was in there, I've had CD for almost a decade, undiagnosed.
My husband had me go to urgent care on December 29, because I had been having more and more abdominal pain, and had not had a BM for more than two days. We were expecting a great big enema, or laxative, or something, and then I'd be able to go home. As we waited at urgent care, the pain got worse and worse. Soon I was almost doubled over in pain, and I was trying my best not to scream. It was at that point that one nurse said, "Screw getting you into a room. We have a bed in the hall, I'll get the IV started and get a Doc's okay for pain meds."
They got that started (IV's are never easy on me, but they were easier back then because my veins weren't so abused), and they ran the blood. The blood work came back "normal", but the doctor didn't want to give up. So they also did an X-Ray, ultra sound, and a CT scan. All of which showed major inflammation, and a HUGE blockage. They decided to transfer me to the hospital, next door.
Soon after getting to the hospital, they put me on official NPO (nothing by mouth), and they intubated me. I've never had to do an intubation since, and I'm very glad, because those are the most uncomfortable things to have down your throat for almost a week. While at the hospital, they (eventually) collected a stool sample to check for bowel diseases that may be causing it, but the GI that I had assigned to me has been one for over sixty years, and he could tell what was wrong. He ordered a colonoscopy, and one of the younger doctors did it. That younger doctor is now my GI, but I don't like him.
The colonoscopy showed all sorts of ulceration and inflammation, and my GI told me that, although he technically had to wait for the biopsy to come back, he had almost no question that it was Crohn's Disease. At first I was happy to know what was wrong. I have experienced bowel incontinence for over two years now, and I didn't know what was causing it.
I started doing my research right away. He said that I "seemed to have a fairly mild case." And he would prescribe some Pred and I'd be back to normal in no time at all. HA! I went through January going in and out of urgent care and the hospital. February came around and I was back in the hospital, he decided to start me on Remicade because "it seems to be more severe than was first thought". No kidding! I had my first infusion there in the hospital, and two weeks later (still having pain) went to the infusion center for my next dose. The nurse took my vitals, and noticed that I had a fever. I told her that I'd had one off and on for almost two weeks. She called my GI to see what he wanted to do, when she came back she said that his response was "It's either this treatment or surgery". So she did what he said and gave me the infusion. Two days later I was in urgent care for highly increased pain and a fever. They did another CT scan and ran blood work. Told me the white count looked "slightly elevated, but nothing to worry about." They sent me home with more Pred, and told me to call my GI. We talked on the phone, and he told me that he was going on vacation the next week, and to try and stick with the Pred, Oxy, and wait until my next Remicade appointment. At the end of the next week, I was in so much pain, I couldn't take it anymore, so we went back to urgent care. Round of drugs, blood work, and CT scans, and this time they found something! They found "a single, small abscess" and were going to hospitalize me and put me on antibiotics.
When my GI got back from his vacation, he ordered another CT scan to see if things had improved. They found two more "small" abscesses, but still insisted that all I needed was antibiotics.
I had had enough, and I told them that I wanted a third opinion, from the surgeon. The surgeon ordered another CT (this was two days later) and said that from what he saw, I needed surgery. He scheduled me for two days later. When he went in he found:
18 abscesses (three of which would have gone septic and most likely killed me, had I done the next Remicade infusion like my GI wanted)
8 or so adhesions (one of which was intestine adhered to my bladder, another has intestine adhered to my uterus)
1 fissure between my intestines and my bladder
He ended up having to put in three JP Drains, and a temporary ileostomy. I broke down into to tears when I found out he had needed to do the ileostomy.
Three months later (at this point we are at June 29) he did the surgery to reverse my ileostomy. I had been in and out of urgent care for a month telling them that I had pain when peeing, and that I have had a UTI before, and this was different pain, but they always just did a urine test and when it would come back negative, they'd pretty much shrug and send me home. So I called my surgeons office, and he said that it was most likely an adhesion that had formed. When he did the surgery to reverse the ileostomy, he found that my bladder and uterus had adhered to each other. At this point I didn't trust my GI, PCP, or the people in urgent care.
After the surgery, my GI started me on Mesalamine, but it hasn't worked, so he started me back on Remicade. I had my first infusion today. I am hoping for no more abscesses.
Anyway, that has been my year. That is how I was diagnosed.
Although finding an answer can seem like a blessing at first, sometimes the road gets bumpier after the diagnosis. Hopefully you get put on a medication and go into remission right away. I pray that it is like that for you, but for most Crohnies, finding the diagnosis is just the beginnnig. Good luck!