Crohn's Disease / Ulcerative Colitis Community
Crohn's or Behcet's or Ulcerative Colitis
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This forum is an un-mediated, patient-to-patient forum for questions and support regarding Crohn’s Disease and Ulcerative Colitis issues such as: Abdominal Pain, Arthritis, Bleeding (Rectal), Blockage (Intestinal), Delayed Development (Children), Diagnosis, Diarrhea, Fissures, Gall Stones, Growth - Stunted (Children), Kidney Stones, Living With and Managing Crohn’s, Malnutrition, Medications – Drugs, Nutrition, Pregnancy, Protein Deficiency, Research, Skin Problems, Stress, Surgery, Symptoms, Tests, Treatments, Ulcerations – Sores, Weight Loss

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Crohn's or Behcet's or Ulcerative Colitis

Hi,

I am new to all this, but really in a state of not knowing what to do.

I was diagnosed with Behcet's - though only 'presumed' and still have no confirmed diagnosis on this. Mostly based on one episode of mouth ulcers, but genital ulcers being predominant, along with rashes on my face. I have probably had this since I was in my 20s, but the doctors did not know what it was when I saw them. All tests for Herpes, etc biopsies and such have come back negative.

My problem now is with my rectum, which has blockage of some sort. I have had a CT Scan and an MRI, and one came back with Chronic Diverticular Disease the other with Diverticulosis. Neither could find an abscess or any blockage in the upper part of my colon.

I went to a doctor to talk about a colonoscopy, and he said that my rectum was so narrow that he would not do it... Now I am in constant pain inside, which does not leave me. I take Colace to keep the little food I eat 'flowing' and Milk of Magnesia (which I have been taking for about 4 years). I have been told there are adhesions in my rectum (? is that possible ?) and have an appointment to see a specialist - but not for twelve weeks. I am happy to fly to see one somewhere, if I just knew who.

I have had a lot of abdominal surgery, two hemorrhoid surgeries, surgery for infertility many years ago, and endemetriosis. Also had a strangulated hemorrhoid some years back. And a hysterectomy. Have a lot of scar tissue all over the place.

I feel really at a loss. Have had constant pain since June, where my coccyx is, and all over the anorectal area. An ache in my urethral area, and pain right side inside my rectum.

I am trying to find a doctor to see (I live in an isolated area and must fly to wherever - I am on the East Coast), but feel an absolute sense of desperation. Being in pain, not being able to eat as worry that won't be able to pass what I have eaten eventually, and worry about it all.

That is all I can manage about my situation for now. I have had so many tests and just want things to get back to normal. I am in my early 60s.

Bernadette
2 Comments Post a Comment
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Avatar_m_tn
Dear Bernadette,

There are many places in the east to find an answer. I live in Arizona and fy to NYU to see Dr. Yusaf Yacizi at NYU.

Dr. Hellman at John Hopkins is great, my friend flys back to him.

E-mail me if you need further information.
Check out on the internet....Vasculitis Association and you will find a lot of reading information.

Good Luck!
Mona
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Avatar_m_tn
Did you find an answer to your health situation.

I have been waiting to hear if they found what you have or are you just getting into having several tests down currently.

I sincerely hope you are doing better! I care what happens to you, so I hope you are winning this battle with your health..

Sending you the best wishes possible!
Mona
Rosemona
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