Hi, My name is Tish. I'm 36 year's old and I have recently been diagnosed with Behcet's. I have been coming to the BOW site since the middle of April when I was diagnosed. I have found it extremely helpful, since when I ask my Rhumetologist about info on Behcet's, he didn't have anything and sent me to the arthritis foundation, and from there I found this site.
In the beginning of March I started having severe stomach pain's and went to the Emergency Room and was sent home, because the Doctor said it was from too much exercise. The pain continued and I went to my primary and he thought it was my irritable bowel syndrome coming back and started me on Bentyl. The pain's subsided, but three day's later I awoke with 3 to 4 pimple's on each knee. That night when I was getting ready for bed the pimple's had turned into what looked like blood blister's. I called the Doctor, and he saw me the next day and sent me to a dermatologist, because he thought they purpora, the dermatologist said they were not and had never seen any thing like them, by then I was having trouble walking because of pain's on the bottom of my feet. The Derm took picture's and biopsy's and said I could return to work because they were not contagious.
The next day I went to work and could hardly walk, I had taken some Vicoden that had from when I had a tooth pulled and it got me through the day. The next day I had the lesion's all over my leg's and behind. I couldn't sit or stand, I also couldn't eat because they were in my mouth also. I went to the Doctor's, he ran all kind's of test for vanerial disease's and set me up with GI Doctor. He also started me on percocet's because the pain was pretty bad. By that night I ended up in the ER, because my hands were so swollen, that they had to cut my ring's off. They gave me a shot of morphine and sent me home.
I kept calling my Doctor because the pain was so bad and my hands were so swollen. My knee's, ankles and elbow's were hurting pretty bad. All he told me was to take the percocet's until I saw the GI Doctor the following week. By that weekend the pain was so bad that I went to the ER and the Doctor there finally admitted me. Over the next 5 day's I saw the GI Doctor who said that it wasn't inflammatory bowel Disease or Crohn's. I saw the Infectious Disease Doctor who Tested me for every thing under the sun with no results. Then finally the Rhumatogist came in looked at me and told me that it was some form of Vasculitis He asked me what my ethnic back round was and told him Irish. So he sent out for special test's to the Mayo clinic.
The next day they discharged me with only pain medication, Ice pack's and a donut to sit on. Three day's later, of course it was the weekend again, I had to call the Doctor on call and tell him the swelling in my hand's was worse and that my finger's were turning black. He called in a prescription for celabrex and told me to stop the motrin. That night I ended up back in the ER and by then the nurses were sick of seeing me, and treated me like I was just a pain. Since I had a diagnosis what else could they do for me.
Thank goodness for the ER Doctor, who argued with the on-call Doctor that I had spoken with earlier, and they readmitted me. Once in the Hospital they put me on Morphine and when the Rhumatoligist finally came in, they took a TB test, then when that came back negative they started me on Prednisone. They told me I was lucky I went to the Hospital, because if I didn't I would have lost my finger's on my right hand.
Discharged again, went home with the swelling going down, still had the lesion's but I wasn't getting any new ones. So I was happy, I had a diagnoses and a medication that seemed to be helping.
With in four day's I woke with severe stomach pain's, ended up in the ER again with the worse pain I ever had in my life. They did Emergency Surgery on me. I had a Perforated Bowel. The surgeon told me afterwards that he did not understand why my bowel perforated where it did that it was very unusual, and they sent a section of my intestines to the pathologist. When I went to see the Surgeon after discharge he said that found some thing in the intestine's but did not have a clue what it was.
The next day I saw the Reumatoligist and he told me he talked the Pathologist himself, and the pathologist told him he would never guess what he found, of course my Rhumy to that it was the same lesion's I had all over my body. So he finally diagnosed me with Behcet's.
So as of right now, the doctor has decreased the prednisone to 20mg a day. To see how low he can go before I flare up again. Then he said he will add Meditrixine. So now I spend my day's waiting to get sick, dealing with the joint aches and the fatigue. I now have A ENT Doctor for the hole the lesion's left in my nose. And next week he's gonna test my hearing. Tomorrow I go see an Ophthamologist, to get a baseline on my eye's. Friday I go to See the GI Doctor about having a colonoscopy, because I have been having intermitant bleeding and my Rhummy is afraid that the lesion's have already started forming in my intestine's again.
My Question to you all is with the Behcet's do you always have to be on medication? Also my rhumy keep's harping on me about quitting smoking, he say's that if I don't that they will have to start amputating my finger's by October, that is one thing I have not read about on this site. I am very scared of what lay's ahead for me. Anyway I look at it, it doesn't look good at all. Thank-you for listening to my story I know it is long, but I needed to get it out.
Thanks again Tish