UGH! So frustrated with Crohn's!

OK, so after years of remission, I have been feeling REALLY bad the last few weeks. I really thought I knew my body. I've dealt with kidney stones almost on a yearly basis. When no one agreed that I was having trouble with my gallbladder (including 2 doctors and an ER visit), turns out my gallbladder was so bad, they had to do surgery that night. I met my surgeon after the surgery. So now, the pain I'm feeling, is SO similar to the partial obstruction I had years ago and I was sure that is what it is this time. I've had the pain in the same area, horrible gut noises, horrendous pain as my bowels move, bloating, nausea, vomiting, and heartburn. The bloating, vomiting and heartburn all goes away when I put myself on a liquid diet. So, I'm truly believing this is coming from a previous surgery - that the scar tissue is causing a partial obstruction.

Well, I went for a CT scan Monday and am going back to the doc tomorrow. There's been a few times I've considered going to the ER because the pain is so bad. Now mind you, I've had 3 kids and over a dozen kidney stones. My last stone I put up with the pain for over a month because I had a new job and had to schedule lithotripsy around my work. (Now I'm in too much pain to work.) But the doc's office called and said it was "just" Crohn's inflammation and wants to put me on steroids again (the devil medicine) - only after having a CT scan - no other tests or colonoscopy.

So 3 things - 1. Have you been wrong about your own body when you were SO sure of what it was? 2. Have any of you ever denied taking prednisone before? I'd been on and off it so much that I've had issues with my teeth and panic attacks when I come off it too quickly. I don't want to deal with the joint pain, the weight gain, the staying hungry although when I eat, the pain is worse, insomnia, etc, etc. So far, it's never been a wonder drug - I ended up taking other meds and hospitalized anyway. 3. Would you wait until insisting on a colonoscopy before taking any meds?

Sorry for such a long post. I'm just frustrated. I am newly married with a combined household of kids (7) and although I have a wonderful husband, I feel like I am taking away from my new family instead of being the woman of the house. I can't survive on pain meds all the time. I want to go back to teaching dance classes (ballet, hip-hop, jazz - for kids) and I want to be the wife and mother I need to be. Ugh. I truly HATE this disease!!!

Well, I had that section removed during my last surgery - the last 2 foot of small intestine and first foot of large intestine. When he was pressing on my stomach and I complained of the area to my right of my belly button, he said it was definitely where my resection was. And I've never had entocort - but that's on my list of questions to ask.

Thanks!!

Thanks Nanners! I have an appointment to see him tomorrow. I will most certainly ask about the Entocort. I guess I'm just totally thrown off with being wrong with my own body. Last time I was told it was Crohn's, it took years of trying every med available only to stay in pain and have surgery anyway. Ugh. Even then, they said they would only have to remove a few inches but to the surgeon was surprised ("No wonder you were in so much pain") when he had to remove 3 foot due to fistulas forming between my intestines. I rarely complain about pain but it seems when I do, they don't believe me. It's frustrating.