Crohn's Disease & Ulcerative Colitis Support Group
Crohn's disease is a systemic inflammatory bowel disease (IBD) of unknown cause, that results in chronic inflammation of the intestinal tract. It can affect the entire gastrointestinal tract from mouth to anus, and can also cause complications outside of the gastrointestinal tract. There is no known medical or surgical cure for Crohn's disease, but there are many medical...
Ok, so I've been on the IBS-D and Hypothyroid groups for awhile now. The doctors still can't get a handle on me. My question is this: To all of you facing this horrible life, how long did you have symptoms before the doctors could find it?
I have been through several tests, celiac came back negative, but they did find inflammation, crohns and UC was also negative, but they said they couldn't go into the small bowel, so there is a possibility it could be hiding, but ruled it as IBS-D. I'm on elavil (a very low dose) they can't go up because I start having bad allergic reactions to it and I've tried antispasm meds, same reactions, puts me in the hospital with numb face, heart palpations, shaking body, mind issues, ect.
I've had basic blood tests for crohns, Lupus, reumatoid, all came back negative. I've had small bowel series, I've even had a ct of my abdomen, still all normal, and they found a polyp in my colon but it was benign and he did say that wasn't normal for my age. The only thing that shows up is Hashimotos, but it gives me only 2 hypo symptoms and 3 hyper symptoms. I started having some head pressure and migraines and black out vision, so I am now going to be getting an MRI of my brain to make sure nothing is wrong there.
I have been living with cronic diarrhea for 14+ years now and extreme pain in my belly/low back, and cramping. It just feels like my intestines are being sqeezed really tight and it hurts. I have tried everything, drinking aloe vera juice, I'm on 3-6 probiotics a day, I've done the starvation diet of no dairy/gluten/nuts/fruits&vegies/no bread/sodas/fiber, and still I had pain and runs everyday. The elavil finally gives me a few days here and there with no pain, but I am still taking 6 imodium every 3-4 days just to keep me regular.
How long did you guys suffer before they found what was wrong? I guess I am hoping that maybe I'm just showing really early signs and they will see it in a couple of years or something.
Thanks for listening, I'm just so lost and tired of dealing with this.
I have been through several tests, celiac came back negative, but they did find inflammation, crohns and UC was also negative, but they said they couldn't go into the small bowel, so there is a possibility it could be hiding, but ruled it as IBS-D. I'm on elavil (a very low dose) they can't go up because I start having bad allergic reactions to it and I've tried antispasm meds, same reactions, puts me in the hospital with numb face, heart palpations, shaking body, mind issues, ect.
I've had basic blood tests for crohns, Lupus, reumatoid, all came back negative. I've had small bowel series, I've even had a ct of my abdomen, still all normal, and they found a polyp in my colon but it was benign and he did say that wasn't normal for my age. The only thing that shows up is Hashimotos, but it gives me only 2 hypo symptoms and 3 hyper symptoms. I started having some head pressure and migraines and black out vision, so I am now going to be getting an MRI of my brain to make sure nothing is wrong there.
I have been living with cronic diarrhea for 14+ years now and extreme pain in my belly/low back, and cramping. It just feels like my intestines are being sqeezed really tight and it hurts. I have tried everything, drinking aloe vera juice, I'm on 3-6 probiotics a day, I've done the starvation diet of no dairy/gluten/nuts/fruits&vegies/no bread/sodas/fiber, and still I had pain and runs everyday. The elavil finally gives me a few days here and there with no pain, but I am still taking 6 imodium every 3-4 days just to keep me regular.
How long did you guys suffer before they found what was wrong? I guess I am hoping that maybe I'm just showing really early signs and they will see it in a couple of years or something.
Thanks for listening, I'm just so lost and tired of dealing with this.
The only advise I have is to keep pushing and find a core team of doctors you trust, are compassionate and caring. If they look like they are not working hard to find an answer for you, move on. I have been working with my PCP and GI for 10 years to find an answer and they worked very hard for me. I just wasn't a typical case but we have it now and I'm so grateful.
Good luck finding your answer. There are some rare disease that look like Crohn's like Porphryia and Andioedema so you may want to have someone look at those things too. Find a good Immunologist because they have some diagnosing tricks up their sleeves.
Take care,
Julie
Hang in there and keep pushing like Julie advised. I wish you well and let us know what they find. These people are great here, I wouldn't have made it without them.