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Xrays not showing active crohns-so why am I hurting?

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Crohn's Disease
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Posted 3/12/2012 8:04 PM (GMT 0)
Hi, I don't post on here often but I do respond to your posts if I can offer advice. I have been really sick since Feb. 14th. I have had belly pain, nausea, and not being able to eat much because it hurts after I eat and I have D. I did go through a bout with C once. I went to ER and they said CT showed nothing. I saw my GI about a week before this got so bad and she had no answers for the chronic pain I had. She made me a consult for a pain clinic. I tried to get her to give me a pill cam xray or some other testing but she disagreed. I did have a MRI and colonoscopy last year but this year things are different. The tests last year didn't reveal much. My blood work is good. I have had a increased WBC and a little high platelet count from time to time. I have lost 7 lbs. in 2-3 weeks due to not eating much and the D. I feel so tired and weak. I want answers which I haven't gotten in many years. I was diagnosed with crohns in 2000 but in the past few years I keep getting sick with no reasons. This feels like crohns to me. Have any of you experienced this?
Posted 3/12/2012 8:21 PM (GMT 0)
I've been having the same issues with left side pain that goes from my belly, ribs, and to my back. Both CT scans showed nothing abnormal, small bowel follow through showed nothing as well. Yet, my pain still persists and is unbearable most times. I've been on low residue/bland diet, and even drinking mostly clear liquids...and nothing is helping. I was put in the hospital for 6 days, and the only thing that took away the pain was high doses of solumedrol which I was getting 4 times a day. Once I was released from the hospital on a prednisone taper, the pain came back full force. I meet with a GI specialist on Friday, and I hope he can help me. I've been having this pain since December 15 - almost 3 months!
Posted 3/12/2012 11:45 PM (GMT 0)
It happens to me all the time! My bloodwork/CT/Xrays are always inaccurate. I was in a horrid flare with blood all in my stomach after getting an upper endoscopy but the bloodwork showed I was perfectly fine. So, my doctor doesn't go by bloodwork much when it comes to determining if I'm flaring. Only upper endoscopies, stool tests colonoscopies & SBFT show my Crohn's progressions. Sometimes even that can be inaccurate though. Their are people on here who have IBS also with their Crohn's. so that could be it or you could have an infection in the colon or something simmilar. Try to see if you can get a stool test.

I've been flaring for a year & a month- I've lost 85 pounds in the first 8 month, even while on Prednisone! Iknow it's frustrating but you know your sick! You may need a 2nd opinion from another GI.
Posted 3/12/2012 11:52 PM (GMT 0)
It is quite possible with the complicated surguries you had to have devloped adhesions. Those are caused by scar tissue. Adhesions can cause considerable pain depending on what has adhered to what. I' surprised your GI hasn't suspected this.
Posted 3/13/2012 1:26 PM (GMT 0)
Yep, happens to me.
Posted 3/13/2012 1:41 PM (GMT 0)
I was sick for close to 6 months and lost tons of weight before my doc finally ordered a stool test and we found c.difficile. This happened several years ago for me, and that time I had Salmonella. I think when my Crohn's flares, then my immunity goes down and I am more susceptible to bacterial infections. It may be your Crohn's but a stool test is non-invasive and worth looking into.
Posted 3/13/2012 3:17 PM (GMT 0)
I am having similar issues, I am glad that you shared what is going on with you because at times I feel like I'm going crazy and now I know I am not because there are people going through the same things I am.
I was kept in the hospital over night last week for observations because I went to the ER with severe and abd pain. They did a cat scan and blood work and everything was good, well tell that to my belly. I continue to have diarrhea several times a day and and pain in the upper part of large colon on both sides and across the top. I feel nausea most of the day and the pain usually increases when I eat, the worst time of day is in the morning for me.
I am scheduled to have a MRI at the end of March and my GI is hoping this test will show what is going on.
Hang in there RxCrohnie, I hope you feel better soon.
Unfortunately, I don't really have any advise as I am relatively new to this whole Crohns thing, diagnosed in 2009, I am learning as I go along and this forum helps.
Posted 3/14/2012 5:39 PM (GMT 0)
Thank you all for the advice and comments. I am glad that by sharing this it helped some of you know we are not alone. I feel the doctors sometimes think we are just making it up because they can't find any objective data. The ER doctors at Duke treated me like a drug seeker. I was in so much pain and they just sent me home in pain. I have not had stool tests since last year. At that time they were negative but again this is a new flare or whatever it is. I tried to get an appt with another GI yesterday but they would not take my case because one has to review my records before they will even accept patients and the other has to have a referral. I think I am going to try UNC Hospitals in NC.
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