Possible CD diagnosis

Hi Heidi, Welcome to HW...sorry you are sick enough to be here. Sounds as though if your diagnosis is CD that your inflamation is not under control at the moment and that is what is causing you to be in so much pain. Once you reach this level of pain it is harder for pain meds to do their job. Hopefully you will get a definite answer from your tests soon. Meanwhile, if you run any high fever or notice any stools that are dark and look like coffee grounds let your Dr. know immediately. Hopefully you'll get to decide on a course of treatment with your Dr. soon and the inflamation will start to subside. It's a tough disease but I wouldn't worry to much about activity levels just yet. You need to concentrate on the inflamation and learn what trigger foods give you the most trouble. Unfortunately for most of us this is trial and error. Keep reading here and you'll learn a bunch. There is also a book out that is free and the title is something like 100 questions for those newly diagnosed with Crohns. I'm sorry I don't remember how I got this book but maybe someone else will jump in with the information for you.

I self-diagnosed as well, so I remember the overwhelming feeling that you're having right now waiting for a doc to confirm it... but don't freak out.

First of all, you don't have a concrete diagnosis yet. There are a couple of other posts floating around about the efficacy of different tests for determining crohns diagnosis... the only test that confirmed mine was the full-on colonoscopy. If you've been through everything else and NOT that - it might be time.

Secondly, I was 23 when I was diagnosed with severe crohns. I got it under control - and most people wouldn't know I had it now if I didn't tell them! I have a boyfriend, I'm getting married, I go out with our friends, I work retail part-time, I drink wine occasionally, I eat dinner at restaurants without having to "special" order something, I want to have kids, I over-eat at holiday dinners... I live a pretty darn normal life. Sure, I might stake out the bathrooms in every public place I go - but I don't usually have to use them. I just need to know that they are there. And I might have to forget about that wickedly sinful looking piece of cheesecake on the dessert platter - but it's not the end of the world. The biggest adjustment and conclusion that I, personally, had to come to - was the commitment to keep my life as simple as possible and as stress free as possible. I found early on that my full-time stressful job made my crohns quite literally 4x worse than it had to be. Once I took that first step to downsizing my life - the rest was easy. I found a part time job, applied for SSI, found a slightly smaller living space for cheap... and what do ya know? My medication costs (remicade) went from $4000 a month, to $4000 every 4 months (before insurance, of course), and I feel like a million bucks compared to how I felt when I was diagnosed. Like you said, every one is different. That's just my story.

I know you're in pain right now, but you'll get through it. The board is an awesome resource. Never hesitate to ask ANYTHING or say ANYTHING - because chances are - we've all said the same at one point or another ourselves! Best of luck to you!

I have lived with Crohns for all but 18 years of my life. I have gotten married, had 3 children and have worked in the same job for 18 years. Crohns is not a death sentence. Once you get the disease under control you can have a very normal life. You will just need to take your meds and and watch your diet a little more than others.

Hang in there Heidi, I don't see anything in that symptom list that would drastically change your life ( Once the pain & the Big D is under control!). We'll be praying for you..

Sincerely,
Matthew

Mayo may be a good choice for you & your situation...
BTW, many of us ride the DX merry-go-round for years. I had problems from my junior year in college on. Of course, being the alarmist I was in those days ( & because I had never EVEN heard of Crohn's disease) I often worried about cancer. Diagnosis is as much art & interpetation as it is science, even if you DO have our DD you may not get a 100% diagnosis. And for some reason, docs lately are hesitant to make the call..
Not trying to bum you out, but its justy a fact of life for us.

Take care,
Matthew

I have had two CT scans, colonoscopy, upper GI, and Barium X-Rays done. On the colonoscopy, they found that my colon had inflammation and some fluid. I also had a diagnostic laproscopy done, which the doctor said everything lookd fine. I am just really getting frustrated and am at the point where I don't care anymore. I am supposed to be having a pill cam done on Wednesday, but from what the doctor's say it should come back fine, since the biopsies have been all fine. The only relief I have is when I am on the Anexsia and I can't stay on them forever. I haven't taken any pills toady (I am home alone, trying to clean house, and taking care of the kids) and the pain is so horrible. The more I do the worse it gets. Sorry to be pouring everything out on here, but it seems like since yesterday you all the only ones that seem to have anything reassuring to say to me. Thanks so much to all.

I have had two endometriosis surgeries, my gall bladder removed a C-Section, and tubal ligation all done. But I had a diagnostic lap done last week while in the hospital and the ruled out any adhesions from previous surgeries. My digestive disease doctor was the one who said he was leaning towards CD or Lupus. I spoke with one of his colleagues (while he was out of town) and he seems to think that there is nothing wrong and that I will just have to deal with the pain. I however just found out that this doc I spoke with just finished his residency in July, so he probably isn't very familiar with many diseases or not comfortable. Right now I am on meds for the pain, the D and some GI stuff. If I don't take the pain meds, then I just hurt for the whole day. But I don't want to have to take them all the time either.

Did I miss that you haven't had a small bowel follow through? What about your bloodwork? Is your white count elevated? How's your C-reactive Protein? Just some further questions to throw out to your GI. I pray you find some answers soon. If this is CD, we've all been where you are now...hang in there and take the pain killers for goodness sake...no need to continue to suffer if they don't constipate you!

Hi Chevgrl, I was diagnosed with Ulcerative colitis 4 years ago..had the fevers, hi white blood count, bklood in the stool, mucus in the stool. I became anemic. If u don,t have inflammation in the small bowel, which is more related to Crohns, you may lean more to Ulc colitis. I have a 'mutt' version of both diseases...my gastro doc said in over 20 yrs he hasn't had a case like mine. Each person is different. Make sure you push the matter with your doc..a fever and abdominal pain are not normal. Good luck!