Confessions from a Patient with Behcet’s Disease


The day you are diagnosed with any chronic illness will be the day your life will change forever and will never again be the same! So many emotions will flood your mind, and you may see your life pass in front of your eyes.

Over the days, weeks, months and years, you finally realize that this is now your life.

Many people only see a doctor when they become sick with a cold, flu, a broken bone or a sprained muscle,.  Some may never visit a doctor. Their pain will be acute, and once the cause is treated, the pain will leave. The medicine they take will only be for a short time. However, those with a chronic illness have lives that are filled with doctor’s visits, medicines, tests, pain, exhaustion and grief for “the old life.”

As you move into the existence of what is now “your life,” you will find yourself losing the ability to even enjoy what you did in your old life. Spending time with others now may even feel uncomfortable. The ability to participate in activities you once did becomes more and more difficult as the days go by. You will then find yourself wishing for your old life, even wishing you could work. Wishing you could play sports, wishing you could go to the movies, wishing you could cook, clean and dance. All of these things become much more difficult when living with an illness.

Behcet’s disease is special; it has the ability to be so unpredictable as well as unrelenting sometimes.

I have a more severe form or a “complete” form, if you will. I live with most of ALL the symptoms associated with it. I have folliculitis on my thighs and back that never goes away, central nervous system/neurological (brain) problems with inflammation, partial seizures, headaches, neck stiffness of varying degrees most of every single day, confusion, coordination issues along with balance and vertigo problems, oral ulcers and genital ulcers bi-weekly.

It used to be a constant, unrelenting problem to deal with but since I have been on CellCept, they usually are less frequent and fewer in number. Up until April 2012, I would experience 30 to 50 ulcers in my mouth all at ONE time!! It was so, so painful.

I have gastrointestinal symptoms, ulcers throughout my GI tract, severe abdominal pains and chronic diarrhea, nausea/vomiting, eye inflammation— specifically Uveitis/Iritis, joint inflammation with severe body pain of varying degrees, lung inflammation— or Pulmonary hypertension, heart issues with increased heart rate, an episode of pericarditis, palpitations, chest pain, shortness of breath, thrombophlebitis (superficial blood clots in my veins) as opposed to DVT (deep vein thrombosis) which can be fatal.

Raynaud’s phenomenon, also caused by Behcet’s, is triggered more often when I am cold or stressed. During an attack, little or no blood flows to my affected body parts, which is typically my hands or fingers and, more often than not, my feet or toes. As a result, my skin may turn white and then blue for a short time. My toenails usually turn purple/bluish, and as blood flow returns, the affected areas may turn red and throb, tingle, burn or feel numb.

It is difficult to be confined to my home, to remember a former self who was bubbly, outgoing, goal-oriented and focused on my future. The comfort of a home that so many people look forward to during their days, sometimes can become a source of suffocation or prison for me. My personality and all that I identified myself as is now a fond memory for me to grieve about every now and again. That’s a normal response when dealing with such a life-altering reality.

My new reality is like standing on the edge of a cliff with a brisk breeze blowing every single day, tethering on the brink and knowing that there’s going to be one day that the breeze turns deadly and off the edge I go.

However, I have acquired a perspective in life that few healthy people will ever know. So many people are caught up with their lives and the busy coming and going, they do not realize how much is taken for granted. The ability to get to sleep at night, to wake in the morning and get out of the bed with ease, get their tasks and responsibilities taken care of without pain, to maintain focus and alertness as necessary. To have an appetite and eat what they choose and when they choose. To actually get dressed and be able to go out of the house because they have a career or place to be— and have it not be a doctor’s appointment or a trip to pick up medication.

Mostly, they have no idea what it is like to be me!!! So while my situation in life is unfortunate and I am very limited, I know things could be so much worse! I know that with my illness things may get worse! Knowing this makes me incredibly grateful. I can appreciate each day for waking up, and I can be happy for this even when my digestive system is in ruins, or my kidneys, liver and heart are doing just enough for me to function. I choose to stay as positive as I can and be as happy as possible with what does work for me.

Filed Under: Uncategorized

Tags:, , , , , , , ,

Global Genes Comments

  1. Kara Mckenna says:

    Hi. My name is Kara. I was diagnosed with Behcets a little over a year ago. My symptoms include mouth sores, leg/arm aches, rashes, neurological changes, dizziness, headaches, light sensitivity and complete exhaustion. I am on Colcrys and prednisone. I seem to have a flare when I get sick with something else or stress. I don’t feel like the doctors really know what to do for me. I’ve been to NYU last July where they said yes I have it and to try some different meds. I really don’t mind taking meds if I need them but what I would like is to find someone that has some different ideas. Or someone who actually takes the time to research for you, someone who cares. I find myself feeling hopeless at times and all alone in this. I feel guilty that I am not being the wife, mother and person I want to be.

  2. Hi my name is Shane i was diagnosed with bd in 2014. I thought i had a std and all tests were negative. After months of blood work and tests i was diagnosed with bd. I have most of the symptoms and in the past 2 years my life has done a 360 it tottaly stinks. I went from always on the move to forcing myself to take a shower. I have a good doctor at ecmc dr.neha dang in the organ tissue department she has me on colchricine and prednisone wich helps the severity but as time goes by the symptoms increase and it gets harder to function with every day tasks. My higher power and family give me the strength to carry on but somedays i feel like throwing the towel in. I recommend a good support system friends family exercise and good diet. To anyone that has this disease keep your head up and try to stay stress free. God bless you if you want to talk or need input or refferals you can reach me at sinnottshane62 @gmail.com.

  3. Hi there. I am so glad I found you! All of you. Of course you all know the frustration we all go through when we are getting diagnosed, and that is what I am currently undergoing. I am being seen at Mayo Clinic in Rochester, MN. I have now seen a total of 9 physicians, and they have all come to the conclusion that I do not fit the “classic” symptoms of BD, but, really, what does that even mean?! But, fit enough that they are going to go with it and treat me for it. Here’s my story, and maybe you all, as the experts can tell me what you think… In May of 2015 I started with some strange symptoms. But as I think farther back, I may have been having some of the symptoms even longer. I am 44yo. The symptoms that stood out most were that I had pitted edema in both my legs. Since then and now every month (cyclical) as if I am having a period (had a hysterectomy way back) I start out with dry mouth and bad heart burn. Then I get a migraine, severe joint pain in my low back, flank pain, knee pain, pain in the joints in my hands, and ankle pain. Sometimes and now most times, so severe that I can barely get out of bed. I then get very painful ulcers all over the inside of mouth, tongue, and inside of my lips. The labs have come back negative for the herpes virus. I also get sores in my nose and on the outside of my nose and lower legs. I have not had any vaginal ulcers. Over the past year my eye sight and hearing have diminished substantially and my eyes burn and water but they are not red. During my flare ups, which last about 2 or so weeks, I am in horrible pain, and I have cognitive impairment where I have what I would call brain fog or zaps, short term memory loss, severe depression, I go days without sleeping, and have what doctors would call IBS with severe cramping and sometimes blood. It is ruining my life!there is so much more but those are the main points. Has anyone else had their flare ups so cyclical with their hormones? And does any of this sound familiar to your BD? I feel so alone!
    Thanks!

  4. Misty Reisor says:

    I have been going through this for almost 2 years. Been tested for every STD. All negative. My pcp thought it might be from my gastric bypass. Went to see my OB and she is the one who thinks I have this illness. The mouth ulcers and vaginal ulcers are so bad I can not even go to work.

  5. Your attitude is awesome. I also was DX with a more severe version of Behçet’s disease in 2014. I would encourage everyone to look into dr. Yacizi who is based at NYU. He is the leading, if not only, expert in America. His father was also a leading Behçet’s expert. I traveled from OH to get a second opinion (even though I do have the genetic mutation) due to my other health DX including cancer, ectopic thymus, myasthenia gravis, and SEID… among other simple ones. I have done immense amount of medical research, and have helped a Few other Behçet’s patients by supplying specific articles tailored to them. If you would like any help or want to chat with a another young Behçet’s patient who is trying to make it through despite being disabled, home/bed ridden, and missing the social butterfly life, you can contact me any time at rare connect https://www.rareconnect.org/en/profile/Ashtunney or email me.

    Keep your head up and your heart strong. Best wishes

    https://www.rareconnect.org/en/profile/Ashtunney

  6. Abigail says:

    Hi! This post was SO very helpful. I’ve been in and out of hospitals for years with partial seizures and cysts and bleeding and other symptoms that seem to have no source. My brother was just diagnosed with Behcet’s and I have the gene associated with it. I’m between flare-ups right now, but I was wondering if anyone has a recommendation for doctors in the Virginia/West Virginia area. Thanks!!

  7. My wife was diagnosed of Behcet about a year ago. She has been in and out of the hospital for the past three years until last year the doctor’s told her that she has Behcet. She tried all the mentioned drugs in this blog or some others with no results until we (she and I) analyst the periods without pain and ulcer’s. This periods were usually after hospital visits. She took the same dosage of medicaments at home as well as in the hospital but, in hospital she reacted very position and came home with less ulcers and symptoms.
    We tried to understand what was the big different between hospital and home. Placebo effect came in mind but we were not convinced. The one major different between home and hospital is the automatically injection of anticoagulants during hospitalization. I understand Thromboses is also a part of this disease, but for some reason she reacts to this drug very positive. So, she start injecting herself at home with very good results. In addition there is a book about Behcet by Joanne Zeie in page 68 mentions about anticoagulants as part of treatment. By all means this is not a cure for this disease but it can reduce the ulcers drastically. She is now doing much better thanks to this anticoagulant injections which cost a friction of the other drugs, for more information please free to contact me at ismail_s@yahoo.com.

  8. Thanks for every other fantastic post. The place ekse could anyone get that kijnd of information in such an ideal approach of
    writing? I’ve a presentation next week, and I am on the earch for such information.

  9. What’s up, just wanted to tell you, I liked this post.
    It was helpful. Keep on posting!

  10. Fabulous, what a website it is! This blog gives helpful information to us, keep it up.

  11. I think this is one of the so much important info for me.
    And i am happy reading your article. But wanna observation on few basic
    issues, The web site taste is wonderful, the
    articles is in point of fact excellent : D. Excellent process, cheers

    • Hi I also was diagnosed with bechets Back in 2015 . I see you took otezla . How was that for you and did you experience Any side affect from it . ?? I live in small part of Canada called Newfoundland and therefore their isn’t very many doctor here that know anything about this disease . I was just put on otezla about a month ago . I am also on a small dosage of prednisone .so far I been doing good with no out breaks of ulcers . But my body is in so much more pain my joists are really bad and the chest pain is unbearable. Just wondering if you had any of these symptoms . ?

  12. Thank you very much for sharing your experience. I am also diagnosed of BC before Christmas 2015. I have been suffering since 2010. Many of your symptoms I do experience as well. I have long experience list of different medications. Basic most of the time: Cortison (Prednison). I tried: Methotrexate, Imurek (Azathioprin), Colchicin, TNF blocker Infliximab (Remicade), Aprimilast (Otezla) and now Adalimumab (Humira). What drugs are you taking?
    I do wish you the very best for every new hour, less pain, less suffering, lots of positive views and happiness. Take care of you.
    Gabriela from Switzerland

    • Helmut Schroeder says:

      Message to Miranda. BD is a chronic disease and drugs are not effective. Try the Dr. Kempner white rice diet with fruits and vegetables, like broccoli and asparagus. When you are free of BD signs, add carefully more vegetable to your diet. I control my BD like this for 29 years. You can email me for more info. Good health, H.S.

  13. Hello everyone,
    My name is Miranda. I really have no idea where to start or what to say or do. I am almost 24 years old, and about 4 months ago, I was diagnosed with BD. Like I said, I’m not sure where to go from here. I am completely overwhelmed. I’m not sure why im asking this, but if anyone has any information they can share with me about anything that I can/should do, please email me. I am desperate.

    • Mary E. A says:

      Hi, my name is Mary. I have BD. I have been living with this condition for probably 25+ years. I just turned 50 and realized after all these years my flare-up occur in or around my menstrual cycle, but not every time. There have been years between flareups, but most recently since Nov I have had severe flareups every time. I’m suspect it may have to do with menopause. Though I haven’t officially begun menopause it maybe sooner than expected. I have short bouts of memory loss (of course that may be due to age) more frequent. I’m currently taking colchicine for my BD. I have been taking it for many years. Keeps the flareups to a minimum. The mouth ulcers don’t last as long and the amount of ulcers are few. I have had years without flareups, however that doesn’t seen to be the case now. In November i had one of the worst flareups the ulcers were so large, that walking was very difficult. After my 800 ibuprofen no longer helped with the pain I was taking codine (pain killer) to get through the day. The sores took about a month to heal and a week later flared again (menstral time) . Though this was not as bad but an inconvenience and yet again on my 50th birthday. (See the pattern) I am seriously considering a hisorectomy in hopes that it may diminish flareups. Yes this disease sucks, I’ve had good times bad times and really really bad times. The important thing is that my family is aware of my condition and are very supportive and caring. My husband is an angel. He tries so hard to comfort me . It seems that lately it’s been more of a burden for him but he never says so. In return I’m trying not to let my condition slow me down or keep me in bed no matter how awful I feel. Keeping inflammation to a minimum is also important. Good diet and exercise seem to help. Over exertion increases the chance of flareups so take it easy. You may want to ask your doctor about colchicine is works well. Limit your sugar and bread they cause inflammation in your body. There is an ebook called inflammation 101. Good read. Lots of information. Good luck and stay positive I know it’s hard to I’ve been there, but life is good and it is what it is, so make the best of it.

      .

      • Having a hysterectomy will not solve the flare ups. I was being treated for years with Genetal Herpes. Couldn’t understand how my husband at the time didn’t get it. After repeated flare ups and not responding to Herpes medicine . I suffered 1 month before they discovered it was behcet. My flare ups are now non stop and my doctor is hard to reach. I find reading on line to be helpful . Any suggestions pleased email .

    • feel free to email me anytime. I also too have been newly diagnosed with this

      • Jennifer,

        I’m sorry to contact you like this. I am currently a medical student in the U.S. working on a case report regarding Behcet’s disease. I was wondering if you would not mind sharing your story and picture of your symptoms for our publication, while everything is kept anonymous if need be.

        If you would like to discuss further, please email me at usagiya39@gmail.com

        Thank you very much for your consideration.

Speak Your Mind

*

be-a-guest-blogger

Follow us on Twitter