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.

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Global Genes Comments

  1. I found out that I likely have BD yesterday. I have had horrible mouth ulcers for over a month. The only way I can eat is by numbing my mouth with a prescription Lidocane mouthwash rinse first. I have a really big ulcer at the bottom of my inside front lip and the doctor saw a huge one at the back of my throat My tongue is ultra sensitive and it hurts to just move it. There are only a couple foods I can eat without pain like yogurt and eggs. Drinking isn’t much better.

    About three months ago, I had a genital sore (just one) that I thought was herpes (I’ve had genital herpes outbreaks twice before in my life). I treated it like herpes (with acyclovir) for over a month and it never got better, not typical for my herpes outbreaks in the past. It finally healed but now I have a scar in a place a guy would least like to have one.
    In hindsight, I think it was the BD, not herpes.

    For a long time I’ve been waking up with joint pain so bad I would feel like I’m 90 (I’m 58), then I’d be better the next day. I just wrote it off to getting older but it was weird how fast it would come and go.

    After suffering with the mouth ulcers for three weeks, I went to urgent care, they thought I had hand, foot and mouth disease. Said I’d be better in a week. Wrong.

    Then saw my doctor a week later who was puzzled and put me on a course of prednisone for five days along with Valacylicovar (sp?) in case it was some other strain of herpes, and he ran a bunch of labs. By day five, my mouth was better but as soon as I stopped the prednisone, the painful mouth returned.

    So then I saw him yesterday and that was when he said BD could be a possibility. So I’m on prednisone again for nine days this time. He is reluctant to keep me on prednisone long term because of the other issues it can bring on and my labs are always messed up … high creatinine (sp?), and slightly elevated liver enzymes (I take too many meds).

    Interestingly, I’ve suffered from gout for about two years and have been taking colchricine twice a day to keep the flare ups away and then I had a bad flair up three weeks ago, affected my left wrist too. I bumped up my colchricine to three times a day and it got better. When I told the doctor about it a week ago, he put me on Aluprinol (sp?) instead because I guess colchricine can be hard on kidneys, but now that PD is suspect, I’m back on the colchricine and he’s going to keep a close eye on my kidney values.

    While I’m searching for whatever will work I have a life I have to live and support myself so I need to find someone good who can help me get a hold on this soon. Is it a rheumatologist I should seek out? Or a gastroenterologist or dermatologist?

    I live in the San Francisco east bay in case anyone knows of a doctor who specializes in BD in my area. I’ve been getting depressed out of my mind from the constant mouth pain for so long, and it feels like it’s been months since I actually felt good without a headache, joint pain, fatigue and for the last month and a half this awful mouth pain … I’m petrified I’ll get another genital sore, I think I’d rather have the mouth pain than go thru that again.

    • Chet, start most importantly with a rheumatologist who assesses,investigates & formulates a care plan. With BD you will be referred to an Opthamalogist d/t the risks to your eyes .I was diagnosed in 2013.
      I had my mouth sores biopsies by an oral pathologist, and have seen a neurologist due to L’Hermitte Sign a symptom that can occur with BD..
      Kind Regards,M

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