What Now? All the tests are normal....
Tue, December 09, 2008 1:00 AM
I have had Crohn's for over 14 years now, 12 years post-op. The past 12 years I have been in remission with little flare-ups (Thank God!). Until recently, I have had a major change in my bowel movements, extreme abdominal pain, nausea and have lost about 8 pounds since Thanksgiving (due to the fact that I just can not eat). My gastro ordered a small bowel follow-thru and it came back completely normal. He has no idea what it could be. He has taken me off the Imuran for now and continued with the Entocort. I am taking Lortab and using heat on my gut for the pain, and nausea medicine in hopes that I can start eating a little bit more. The doctor seems to think that it may not even be Crohn's related. I have recently found out that I am Vitamin D deficient and the Crohn's has affected by back and joint terribly in the past 6 months.
The pain and the nausea is more than I can bear, especially now during the holidays. I did not even feel this bad when I had a bowel obstruction and required surgery 12 years ago. I have been scheduled for more tests this week. They will be doing a Abdominal and Pelvic CT scan.
Please Help!! Has anyone had this anything like this happen to you and what did you find out???? I am feeling really scared and depressed.
Joined Nov 12, 2008
Sun, January 04, 2009 9:10 PM
Reply posted for atruelove.
Crohns is so unpredictable. My pain went away in 2004 and never returned. I stopped meds and stayed away from doctors til Nov 2008 when I landed in ICU.
My doctors reprimanded me for not following up these past four years on my serious disease.
I am told I had and still have a severe case of crohns in the ileum. Crohns ulcers affected my head this time and I sure felt pain in my mouth. I was unable to eat for awhile and was my wake up call to take crohns seriously.
Neither GI Dr. can tell me why the ileum bell no longer goes off. I had a partial obstruction and never felt a thing.
Now I am on pred/imuran/remicade.
I still feel no pain below my neck. It is a strange disease and I have never been able to control it.
Joined Jan 13, 2009
Tue, December 16, 2008 1:00 AM
Reply posted for atruelove.
This has happened to me too. The thing you have to remember is that medicine is not perfect. The pictures on the upper GI/follow through are not perfect. I've even had CT scans read as "normal", but that didn't mean I wasn't having symptoms. It sometimes doesn't make any damn sense at all. But, please be firm in reporting your symptoms and making sure they are not dismissed based on the radiology findings. This is your life, and if it is not comfortable, speak up! It may entail a scope to actually look at the lining of your gut. The other studies look at larger anatomy - strictures, fistulas, etc., not what the mucosa (lining) is doing. Not that I wish you a scope, of course, just thinking out loud...
nickrystalJoined Nov 7, 2008
Tue, December 09, 2008 10:43 PM
Reply posted for atruelove.
I can relate somewhat.. I havent had any surgeries (thank God.) but I was in remission with crohns for 5 years, and out of nowhere I started having extreme abdominal pain, diaarea, and some nausea.. I went to my GI doctor and he did a colonscopy and a GI series and all have come back normal.. They are still doing all kinds of tests on me, but have no idea what is wrong.. I have even got a second opinion just to be sure it wasnt the doctor.. I have been trying to remain hopeful that they will find what is wrong with me, but it has been difficult as I'm sure you understand.. I just wanted to reply to let you know not to give up.... Get alot of support too, it does help.. Please keep the faith and remain hopeful... I will be praying for a speedy diagonis and healing for you... Blessings....
Joined Sep 26, 2008