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’ve been fighting bechets for about 13 yrs now, it’s a struggle everyday. I go to bed every night not knowing what’s in store for me the next day. I’ve been taking prednisone for 10+ years, yes you heard me right 10 +. It seems to be the only medicine that helps me. And as soon as I stop taking it I have terrible flare ups or my body just goes into withdrawal from not having it. I just recently started a new medicine the Dr’s want me to try and ween me off the prednisone at the same time. Hopefully this works because this is all getting very old and very frustrating. I was always an active person, I played football in high School I work in the construction business which isn’t easy on the body. Now I find it challenging walking my dogs around the block. If there is anyone out there with any helpful tips or different treatments that worked for them please share.

  2. Ana Cheyanne M says:

    I know how this feels entirely… I read this article and started crying because I relate to it all. I have behcets disease in a SEVERE form as well. I was told it was unusual and so many dr’s don’t know enough about it they think that it only causes ulcers and joint pain they aren’t aware of the nuerological damage that mimicks MS, the damage to the organs and vessels surrounding them and it almost killed me. My heart got affected recently I had a seizure due to lack of oxygen because my heart was beating so fast it would stop for a moment leaving me without oxygen then restart. I was admitted to the hospital then referred to a cardiologist after they got it under control. THANKFULLY this Dr knew about Behcets and that’s when I learned the ugly truth what it can do and what it is doing to my body. I have had it my entire life and wasn’t diagnosed till I was 19. I dealt with the “It must be all in your head” or the “I know something is wrong with you but I dont know what” and the “Well maybe if you exercised more eat better sleep more you will feel better” and finally “PRAY PRAY PRAY god will heal you” when all those options were not doing it I had had enough and so had my mother who stood by me through it all. I had ulcers in my eyes, mouth, genitals and at first my Gyno thought I had herpes because of the way it looked well the tests were done and it was not herpes. So she sent me to a rheumatologist outside of my city and by this point I had given up on dr’s I had ENOUGH of it all. I just wanted to curl up in a ball and stop doing anything because it all became so painful and pointless (I used to be a cheerleader, I iceskated, rollerbladed i was VERY active before it really set in and started down the path that CHANGED MY LIFE FOREVER) well the dr who diagnosed me was about to retire but he vowed he wouldn’t leave until he diagnosed me so he got ROI’s for my other doctors and he diagnosed me within a month but it wasn’t enough to have a diagnosis I had to prove it to my insurance to get the medicine that I needed (which ended up being a waste of time since I’m allergic to most of them or they just plain didn’t work) and so the long process of being a lab rat started until we had a firm set in stone diagnosis of behcets. At this point I was 19 I was seriously sick of life and was ready to just say f*** it (excuse my language but if you’re dealing with severe behcets you know what I’m feeling and god I feel for you NO ONE DESERVES THIS). I told this dr that he was my last hope that I had come in there with suicide on my mind because the flare ups were horrible I had vasculitis really bad and I couldn’t go out I couldn’t have a relationship I barely got out of bed because it was hurting my joints SO badly I wanted to scream. Well unfortunately he retired before we could continue finding a new regimin of medicine. Since then its been a battle to find a rhuematologist that knows ALL of the aspects of behcets and understands it is DEADLY in some cases which I have all of the symptoms, the GI tract problems including GI ulcers, mouth genital and eye ulcers, Lesions on the brain, SEVERE joint pain, Crippling migraines, I lose the ability to see when blood flow isn’t functioning. Then I’m sure there’s more I’m forgetting I just am happy in a bittersweet kinda way to see I’m NOT ALONE. I feel like I am sometimes because your family and friends try so hard to understand but they can’t they think they do but you can’t possibly expect them to understand what it feels like when your body turns into a prison and its the warden as well as the executioner when it feels like it. I feel like its never gonna end and that the drs cant find a medicine that helps and pain management is SOOOO hard to find now days because of the people who abuse medicine. I dont know what to do.

  3. I’m a 25 year old mother and I have been diagnosed with BD ever since I was 6 years old where I would get painful ulcers in my mouth or vaginal area, up to 10 in my mouth and the most of three quarter sized ulcers in my vaginal area, which makes it so hard to walk it becomes unbearable. For nearly a decade I had to go through lots of doctors and they would all terrify me by saying what I had was HIV until finally a REAL professional said if it was HIV my ulcers wouldn’t burn. Still have yet to recieve help from anyone I’ve come across other than small tubes of goo they give me to numb them. I heard about medication to help with the flare ups but it seems nobody cares to recognize its so painful to even take care of my kids, ages 1 and 4. I’m just grateful they did blood work on my kids and they don’t have BD. But, I can’t even get a job with this and have no idea is SS will accept this as a disability or not, for the longest I get these ulcers can be from 2 weeks to 2 whole months.

  4. Well I was just diagnosed BD in October 2017… but in August of 2017 is when it all started & no one here in Texas had heard o it.. so, as I was in & out of ER’s being mid-diagnosed, my ulcers in my mouth & throat was only getting worse. So, finally when one of the many hospitals kept me (for 3 long weeks), they got me a rheumatologist & he diagnosed me with Behcet. When I was released I was told that this would go in remission within 2-3 was. It is now February 2018 and I’m still screwed.
    I’ve been struggling getting passed the pain in my mouth & my arthritis flaring up in my right knee. It’s been swollen now for a month. I have gotten vericose veins in my arms & legs. My hips and right upper leg have cramped all day, even with my pain killers.
    My life has changed drastically, I can’t work anymore due to very bad back pains and neck stiffness. I’m trying to cope with this, but, have gotten very depressed on top of my othe depressions.
    Well enough of my venting. Just know that life goes on one way or the other. Don’t give up or give in. Take it one day at a time and learn coping skills, you’ll need it.

  5. 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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