Hi everyone,
I am wondering if anyone else with Behçet's Disease has ever been diagnosed with "Autoimmune Gastrointestinal Dysmotility disorder"? This is far different than typical Behçet's gastrointestinal symptoms or "Chron's-like" symptoms.
Thanks
I am also diagnosed with Achalasia (an uncommon condition that affects the muscles of the esophagus. It causes difficulty in swallowing both food and fluids.)
I have gastric problems and it has been suggested that Behcet's disease is the culprit. It is a bit of bother, and I have to watch my diet anyway because my kidneys have been damaged due to BD not being diagnosed for twenty-odd years! How are your symptoms different? I hope you are getting some help with this. x
I guess I should explain a bit further. Autoimmune G.I dysmotility is actually a seperate autoimmune disease (but more than likely can become secondary to our crazy disease or be mimicked). It occurs when the nerves become attacked and damaged in the G.I tract causing what is called "dysmotility"--- basically food, drink, medications, cannot properly be digested from the stomach to the small intestines, nutrients cannot properly flow throw the small intestines, and stool cannot properly pass through the colon in a normal manner. This causes delayed emptying of the stomach.
So basically for the past 3 months now I have been very ill with a new cluster of symptoms (well not so much new because I have always suffered from chronic nausea and other G.I issues... but something is much different about how I am feeling now...).
Every single day I am so sick to my stomach (worst than usual) and it has become completely uncontrollable (I have always taken either Granisetron (kytril) or Ondansetron every morning to help prevent severe nausea and then Gravol as needed through the day). Along with the severe nausea I have this chronic awful taste in my mouth that never goes away. I vomit every single day anywhere from 1 to 10 or more times a day. Sometimes I will keep vomiting uncontrollably for up to 25 mins at a time. It is so incredibly awful! The vomiting is so uncontrollable and projectile where whatever is still in my tummy just shoots out, and even once that is gone it is like my body still cannot relax and I continue vomiting stomach acid and bile until I am dry-heaving and all dried-up till the next time. Often times I will vomit food that I ate two days earlier! Even just brushing my teeth makes me gag.
Along with that I have absolutely no appetite. I am basically living off of freeze pops, Jello, and apple sauce.
Things have gotten so bad where I have been unable to eat or drink anything for 3 or 4 days straight, along with the severe vomiting. I have already been admitted to the hospital in June and have ended up in the emergency room just to get rehydrated. What's really bad is the fact that some days I cannot even hold down my medications. I also have autoimmune Addison's Disease and need to take oral steroid every single morning just to stay alive (my adrenal glands have been attacked and destroyed) and if I cannot hold that down or my pain meds, then I have to be in the hospital on I.V. The problem is that they just read it off to a Behçet's flare... but I know that something else is going on.
I remember back about 9 years ago I had a bunch of G.I studies done. The liquid barium x-ray showed it was slow to empty. Then I had one done where they made me eat a pancake with isotopes in it and traced the solid food through the entire G.I tract with a series of xrays every 15 mins or so. I remember that things were not progressing in the scans and eventually the technicians gave up because I had already been there all day.
Another issue is my bowels. I never have normal bowel movements. It is either constipation or diarrhea, never anything in between. My abdomen is also very extended all the time, and I feel completely full all the time.
I am very much wondering if this is what is going on with me. I have brought it up to my specialist to wants to refer me to a brand new G.I specialist. The ER and hospital doctors all wanted nothing to do with this or even in trying to diagnose a reason why I have become so ill like this. To hard enough (as you all know) to live with Behçets. I have been so incredibly miserable because I cannot do anything. I'm lucky if I even have the strength to brush my hair one day.
I guess I am just wondering if anyone has actually been diagnosed with this specific disease, and if so, how were you officially diagnosed, and what kind(s) of treatment have you been given?
Thanks so much, Jen
I haven't been diagnosed, but having very similar symptoms for the past couple of months alongside my Behçet's! I was doing a lot of reading on dysmotility and wondered if this could be the cause, so it's interesting that you've posted about this! I'm going to bring it up with the docs at my next appointment. Hope you start feeling a little better soon!
Lottie x
It sounds like what might be linked with sjorgrens. It's a common secondary autoimmune you probably know already. Think less mucous causes slower mobility. Polymyositis can affect the bowel also in this way. My Dr told me these conditions do not necessarily fit into a neat description but they often overlap to a degree. X
No but sounds like what im going through. My stomach is always a mess. Hurts me all the time. Only thing that helps most of the time is 10 mg of prednisone on an empty stomach first thing in the morning. But then the rest of my body bloats and ive gained 30 lbs in one year on prednisone.
Thank you everyone for your responses and sharing your experiences 😊
I'm so sorry to hear that you all have bad G.I issues, it certainly is not fun. Nothing about this relentless disease is fun. The thing that really gets frustrating is the fact that it can mimic so many other conditions and diseases. I've been sick for so many years now, since I was about 13 and it feels as if I've been battling hundreds of different illnesses. I don't know about you guys but my doctors love saying "it's just the Behçet's".....
Anytime I have a new problem arise or concern or end up sick in the hospital the doctors always just cop out thinking it's no big deal because after all, I have Behçet's. While yes this is true and many times it is the reason for what I'm experiencing, I am still a human being and there could always be another cause for concern.
Anyways, I think I may have realized what's been going wrong with me in the past couple of months. I also have another rare autoimmune disease called Addison's in which my adrenal glands were attacked and destroyed and no longer can produce my body's natural stress hormones (cortisol & aldolsterone). I was diagnosed 9 years ago (5 years before my Behçet's diagnosis) and was put on steroid replacement to keep me alive. Eventually I had become so ill from Vasculitis that I was changed from cortisone to Prednisone and my dose was bumped up higher than a normal cortisol-replacement dose. All along my endocronoligist didn't seem to care that I was on the Prednisone. He always just said "steroid is steroid, as long as you get it."
As the Vasculitis got worse and was attacking my organs, and then following my official diagnosis of Behçet's my rheumatologist had my Prednisone dose bumped up and down for a long time. I also would receive Solu-medrol or soul-cortef (equivalent to or stronger than oral Prednisone) while in the ER or admitted to the hospital.
In the last 2 years things became so bad that I had to go on medial leave from my part-time job in a nursing home and basically became completely bed-ridden and my doctor then increased my dose to 35mg a day. Again, my endocrinologist didn't seem to have a problem with this.
Well in the last 2 years since being on a steady 35mg a day dose I blew right up with a huge barrel tummy, a triple neck and hump back, I feel like my head even tripled in size, etc. All long my endocronolgist saw these signs but never did anything about it.
Then about 6 months ago my rheumatologist told me he was worried I was going to get diabetes from the Prednisone and was worried about all my weight gain. Again, my endo didn't care.
I was finally able to get referred to a new endocrinologist at the beginning of June. It turned out that my old endo never even really properly explained Addison's to us, and I also found out that I should have never been out on Prednisone in the first place because it doesn't properly replace both stress hormones. So basically for 9 years now my Addison's disease has never been under proper control.
Back in June I had already been weaned down to 5 mg Prednisone a day. So my new endo just switched me right over to cortisone-acetate and had me stop the Prednisone.
So I think what I've been experiencing is actually a withdrawal from the Prednisone. I've read about it and talked to my pharmacists about it as well. I guess I figured because I had tapered it down and I was still getting steroid in me that it wouldn't affect me, but apparently Prednisone withdrawals can still happen even with proper weaning. It can get pretty rotten and last for several months. I'm hoping and praying that this is all it is, and that things should only start getting better, not worse.
I wanted to share this because I want others to be aware of this as well, and also remind others that it is so important to wean very slowly off of Prednisone.
Take care everyone 😊 -Jen
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