I was diagnosed with Behcets in 1997 after having ulcers every few months.. they gave me colchicine for a few years and everything seemed mostly under control for a long time.
Now though, I'm at a stressful job living away from home and have been unhappy with where I'm at for a while.... I'm curious if the stress might bring on other Behcets symptoms. One doctor told me that it was impossible that what I'm experiencing is my Behcets because it will always show itself in the first form that it had originally come in. But my sister, years after she was diagnosed, started showing new symptoms and her doctor had told us that Behcets takes the form of many different things so he wasn't surprised when things got a little confusing for them.
For about 8 months now, I get sick after eating. At first I tried to track which foods made me sick, but it was so random that I just never know what's going to make me nauseas. I feel extremely tired all the time and I've always had a problem with possible IBS. My gastroenterologist has tested me for many things that have turned out normal... I don't have stomach ulcers, Celiac Disease, a paralyzed stomach, and my gallbladder is fine. It's getting frustrating because now I feel like he's starting to give up on diagnosing me and is just giving me pills for acid reflux and nausea and hoping it'll help.
Does anyone think that the environment I'm in might be causing it? My friend was thinking maybe my body's been in fight or flight mode for so long since I've had a rough few years that perhaps my body is responding. My family's wondering if the stress in my life has been triggering my Behcets... I've tried changing my diet and it hasn't helped much. I throw up at random times either after eating or just when I wake up some mornings. I've lost about 10 lbs from barely eating since I'm nauseas so often and don't have much of an appetite. Or I just worry about getting sick.
It's becoming extremely frustrating and I don't know what else to do. I've also had back aches and headaches. Does anyone have any suggestions??
Oh man.. this sounds all too famiiar. I have Another rare autoimmune disease called Addison's along with my Behcet's Disease-- basically my adrenal glands were attacked by my immune system and no longer function (they are responsible for secreting our stress hormones called "cortisol" which basically helps with nearly every body function). Your symptoms sound awfully familiar to Addison's-- constanst nausea, vomitting, lack of appetite, constant overwhemling fatigue/exhaustion, weight loss, back pain and abdominal pain, and trouble with handling stress-- it can even cause headaches and many other problems. I'm just bringing this up because you mentioned that you've been living in stressful environment for sometime now, and often the beginning of Addison's disease will be triggered by a stressful event or living in constant stress. It can take years for the adrenal glands to completely shut down, and in the meantime, the body will be living off very little cortisol and adrenaline to compensate-- basically the body lives in "fight or flight mode" constantly. Maybe you should keep this in mind and ask your doctor to look into it-- all they need to do is check your blood cortisol level and go from there-- but this is so rare and most doctors don't think about testing for it. Even though it can be found by a simple blood test, it took doctors several months to even decide to check my cortisol. I had all the same symptoms as you, along with low pressure and constant dizziness.
However, it is very much possible that this is the Behcet's attacking once again-- maybe you had gone into a remission state (you mentioned that when you were diagnosed you only had ulcer outbreak?)-- and now several years later, you are going into a flare again. I think I've read and heard from others on here, that it will often come back even worse after a period of remission-- although I suppose it can vary from person to person.
It is true that whatever symptoms you suffered from prior, are not going to be the same during another flare. Even though I haven't yet achieved a true state of remission, my symptoms and problems tend to come in waves-- like for a few weeks or even months, I will have constant ulcer outbreaks and skin attacks, but have a bit more energy; then I that can improve for a little while, but then I'll be suffering from full-blown arthritis and nerve spasms, and have absolutley no energy. Don't forget that stress is not good for autoimmune diseases either, as it makes the immune system more aggravated and attack the body even more.
I'm not sure if any of this has helped-- but I just wanted to mention the Addison's Disease to you because of what I went through. I hope that you can get to the bottom of things, sooner than later-- so you can start feeling better again soon! Wishing you all the best
Thank you, Jenna! I appreciate the response SO much! Just having another thing to look into makes me feel a little better. I actually have had a few nurses in the past few months at all the tests I've been sent to ask me if it's normal for my blood pressure to be so low. I was never really sure what my blood pressure normally is though, so I couldn't really respond well. Perhaps it's being overlooked. There have been a few times that I've just been walking to my car or down some stairs and I've gotten dizzy enough to stop for a moment till it goes away, but it doesn't happen very often so I just let it go.
I'll ask my doctor to test me for that. I appreciate the input! I think I'm also going to look for a doctor who's more knowledgable about Behcet's and a bit more supportive. Twice now when I've seen my gastroenterologist, he or the nurse have asked how I feel and when I tell them I've recently thrown up and have felt queasy, they simply say they hope I'm not coming down with the flu. I try to tell them that no, it's the same symptoms that I had when I had my first appointment. They've give me pills for the nausea, but I haven't noticed any difference and when I've told them, he just told me to take more each day. My doctor only sees me long enough to ask a few questions on how I'm feeling, tells me what the next test he's sending me to is, and then off he goes and it's a bit frustrating that there is no real discussion.
Thank you again! Depending on how my testing goes, I may be back on here to ask you more questions! I hope you're doing well!
Why don't you keep a diary of all the nauseous episodes and the food you have eaten. If you present this to your doctor, and explain that he will notice that there is no relationship between the food you eat and your nausea. It saves a lot of time if the doctor has an evedential diary like this.
This horrid disease cannot be cured, but the symptoms can be treated. It may be that you could be treated with a simple anti-emetic drug which will control the sickness, but your doctor will have to consider which one as you are no doubt on a whole cocktail of drugs already.
Good luck with everything. I hope you feel better soon.
Thank you for the advice! I actually have been keeping a health journal and told the doctor all the foods that were making me sick. He gave me nausea medicine and has just hoped that would help me feel better. I'm on acid reflux medicine and nausea medicine and he just wants a follow up appointment in 3 weeks even though I've told him they aren't helping.
Last night I looked up a doctor on the Behcet's Association website to find someone more knowledgable about it, so I'm going to give them a call today and set up an appointment.
Hi wow everything you have wrtten could be me. Started with bd in 1984 with ulcers, diagnosed in 1997, now suffering exactly the same symptoms, as you with only one difference I am very happy and settled except of course for this dreaded disease. I too did very well on colchicine and have not taken any meds for BD since 2007 until recently when the ulcers reappeared. Saw my consultant and we decided to go slowly using steroid inhaler, spray and cream. Some still around but not nearly as aggressive as at the beginning of my BD journey. I too have been told I possibly have IBS but I think this was only because after lots of tests etc they couldn't come up with anything else. Since return of ulcers I have been suffering with flatulence, nausea, fatigue, occasional diarrhoea, stomach pains and terrible wind and bad breath. Seems too much of a coincidence that all this has started up again and even more that another person (yourself) is in the same way. I am now making another appointment to see my consultant and wonder what he will have to say. Lets keep in touch and together we may get some answers. If you don't mind I will show him your question on this site and my reply.
Feel free to show him my question! It's nice for me to hear that others understand and that it's not all just in my head. Some friends brush me off saying that it's not as bad as I think and I've been feeling very alone. I'm 27 years old and figuring out my life and since I'm living away from my parents and home, my Mom suggested this site so I can find some support.
My older sister came down with ulcerative colitis years after she was diagnosed with BD (all of us had ulcers when we were younger), but her symptoms were a little different than other ulcerative colitis patients. Her rheumatologist had told my parents that anytime we have a new diagnosis, the doctors should always put the name/Behcet's so that the doctors and nurses know to look at it differently.
I hope you feel better soon and that you might find a new way of treating it to get some relief! I would appreciate keeping in touch. Thank you for your response!
Yes it would be good to keep in touch. By the way I am female aged 61 years and based in London, UK. Gosh you are so young to be going through all this and your sister too, I can only wish that research will soon find some cure or better meds for us all. It seems BD affects us all differently, some much worse than others. Although I have suffered since the age of 34, I seem to be coping better than most. I have had 2 children and a couple of long remissions. Also my consultant tells me that for the length of time I have had BD Iit has not degenerated as much as other patients, so really I am quite lucky. Forgot to mention I can be almost certain what brought about my BD. I was taken suddenly a very poorly with stomach pains, nausea, fever an shakes. I was treated and told it was probably colitis. A couple of weeks later I caught REAL flu it lasted about a 3 weeks, a month later I got my first ulcers. My point being ther we are with the link to the stomach, guts!!!!!!
Anyway chin up and be strong, you can cope with these flare ups, I know it's difficult but you will come through it, there is light at the end of the tunnel.
I read all the comments and there is one thing that is most important for patients of Behcet's: stress!
When we diagosticada the disease, we have a duty to find the best way to live with this.
I had to change my life. Otherwise has not had a chance to continue here.
I had the disease diagnosed 25 years ago. I suffered with this for 5 years seriously. After five more small relapse. After full remission. I stopped taking medicine for 15 years.
I went back to stress and knew it was not advised.
1 year ago, suddenly, signs that the symptoms were new. Brain, eyes, heart and lungs, because the others would you describe what you already had them before and even during remission.
Today I changed my life and I am recovering, but this past year I was in mortal danger. A stroke, pulmonary embolism, binocular diplopia, etc..
My symptoms first started with gastro problem s at 14 I was diagnosed with Ulcerative colitis but it was always apparent I didn't follow the usual pattern of the disease, even back then I was suffering from neurobiological symptoms but no one could pin point the problem I was then also diagnosed with coeliac disease which is not a disease that tends to fit with UC, tend to get it with other auto immune conditions, anyway the disease was so bad I had my colon removed this should have been the cure but all my symptoms persisted by now I was getting month ulcers constantly as well as rashes,awful joint pain etc this continued for the last 7 years I had bowel surgery again recently to have a ileostomy for the 2nd time and the surgeon then found disease in my small bowel so she diagnosed crohns, around the sane time I had an appointment with a rheumatologist as my symptoms were out if control he spotted straight away that he thought it was bechets long story short after lots of tests I was diagnosed with bechets it literally explained every symptom I've ever had, even now when my bowel Is not in flare I suffer with constant nausea,bloated and stomach pain, so my gastro issues are the main issues with my BD, and another main issues is constant headaches,
Have you been referred to a gastroenterologist? If not ask for a referral as sounds like you need a lot more investigation
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