Hi everyone! I'm a new to this site. I have AOSD and RA with unresponsive to steroids and DMARDs. I have severe upper and lower abdominal pain. I took many medications for my stomach pain but it wasn't working. I have no blood in my stools. I just got severe vomiting and nausea accompanied by hematemesis and cramping. I have severe upper left abdominal after eating. There're many gases in my upper and lower abdominal. I have many symptoms but maybe it only caused by my AOSD and RA. Sometime I have constipation, and another time I have diarrhea.
What's antibody tests to diagnose crohn's disease? I read on article that crohn's disease can causes red rashes on skin. What's the type of the rashes? Are any of you guys having gastroduodenal crohn's disease? Please share me. Thank so much.
Hi, unfortunately having an autoimmune disease will mean you are at a higher chance of having another. like one isn't enough!
skin problems are a extra manifestation of crohns (it occurs outside of gastro tract) but not everybody will get them.
common skin probs include:
Erythema Nodosum means “red bumps.” These tender red nodules usually appear on the shins or
ankles and sometimes on the arms. it can affect 2-10% of the IBD population.. Erythema nodosum generally appears in conjunction with an IBD flare, but also may occur just before a flare. It tends to improve with adequate treatment of the underlying bowel disease.
Pyoderma Gangrenosum is most often found on the shins or ankles but sometimes occurs on the arms. Beginning
as small blisters, these lesions eventually join together to form deep chronic ulcers. TPyoderma gangrenosum often follows a similar course to the pattern of the IBD itself, and may heal as the symptoms of IBD are brought under control.
less common skin probs include:
Sweets Syndrome is a rare condition that predominantly affects women. Patients get fever and tender red skin
lesions, usually on the upper body. Treatment with steroids or anti-TNF agents has been successful.
Pyoderma Vegetans can affect people with ulcerative colitis, and is believed to be due to abnormal immune
system activity. The condition appears as blisters, plaques, or patches around the groin and under the arms that darken as they heal. Treatment of this disorder often involves treating the IBD itself.
Vasculitis, which means “inflammation of the blood vessels,” is marked by raised reddened areas that can sometimes be ulcerous. It is believed to be due to abnormal immune system activity.
Also medications can cause skin problems too.
Tests for crohns include blood tests to look at inflammatory markers, stool test called a faecal calprotectin test, colonoscopy/gastroscopy with biopsies.
gastoduodenal crohns is rare (about 5% of IBD). symptoms are very much like severe indigestion and ulcers caused by excess acid - which incidentally can be caused by medications, such as steroids and DMARDS if taken without PPI's (proton pump inhibitors) such as omeprazole.
Have you seen your GP or rheumy about this? and you def need a referral to a gastroenterologist ASAP
It might be worth keeping a diary of what you eat and symptoms after. with gastroduodenal crohns there can be foods that will make it worse. Most of the medications used to treat IBD are the same as used in RA
Hi Willow24. Thank so much for your replying. I have symptoms like gastroduodenal CD. I lost 5 of my teeths and my eyes sore like uveitis but the symptoms of my eyes sore very similar with retina ablation. I still have not gone to an ophthalmologist.
I met several gastroenterologist but none of them make me better. I got many medications for my abdominal pain but all of those weren't working to me. Instead those caused me having other symptoms. And none of them asked me lab test for CD. I read on article that ASCA test is used to diagnose CD. The test for anti-Saccharomyces cerevisiae antibodies (ASCA) is used to help distinguish between Crohn disease (CD) and ulcerative colitis.
Unfortunately, my rheumatologist gave up to my condition as I have unresponsive with many medicines. The common medication to treat autoimmune diseases are DMARDs and Steroids. I'm allergic with steroids and unresponsive with DMARDs. I cannot use MTX due to I have abnormal liver function. Therefore my rheumatologist gave up to me whereas he is a professor of rheumatologist. So horrible my condition. I feel the pain from head to toes every day.
I read on articles that AOSD can causes abdominal pain (20%). But I couldn't find any information about AOSD's patients with abdominal pain to get more information. Both AOSD and RA can attack entire of the body. My rheumy said I have AOSD according to my pink rashes, spiking fever above 41 Celcius, sore throat, cough, difficult to deep breathing, arthritis and myalgia. It was my disease since my childhood but I got the correct name of my disease last month. I have RA based on positive on RF and anti MCV antibody.
My symptoms:
1. I have lost 5 of my teeths because tooth decay without unknown reason. I read on articles CD can causes tooth decay.
2. I have red spots (purpura) and sometime petechiae with pink rashes or pink-salmon rashes
3. I have fever above 38 Celcius every day and spiking fever above 40 Celcius almost every day followed pink rashes
4. I have extreme fatigue, numbness, tingling, joints pain without swelling, myalgia
5. I have headache, dizziness, sometime followed stifness on my neck, eyes sore similar with retina ablation and sometime followed dry eyes and red eyes.
6. I have severe abdominal pain both upper and lower, much gases, bloating and severe upper left abdominal after eating, back pain, hematemesis, vomiting almost every day, nausea and cramping every day. Whereas I've avoided food or drink triggers acid stomach.
7. I have recurrent urinary tract infection, bronchitis and pelvic inflammatory disease. I also had kidney stone 2 years ago without unknown reason.
8. I have tinnitus, temporomandibular joint disorder, raynauds symptoms and brain fog.
9. My rheumy took me for lab test for only RA and the result:
- Low MCV and MCH but normal Hb. It makes me anemia symptoms but my doctors always said I'm normal as my Hb is normal. But I have dizziness every day
- Low lymphocytes and high neutrophils
- High ESR and CRP
- High AST and ALT
- Weak positive RF and positive anti MCV antibody (Mutated Citrullinated Vimentin)
Thank so much, Willow. I live in Indonesia. Biologic agents are not common medication here as the price is so expensive, uncover by insurances and our government don't care much about our diseases as it's not common diseases here. The doctors here highly recommend only on conventional drugs. If they cannot handle our disease, they give up and it's up to the patient to do anything else.
How about you? Would you share me about your experience with CD or UC or both?
Do you have picture or link show rashes due to high liver enzyme? Thank so much for help me.
I started being ill as a teenager with 2 flare ups and altered bowel habit by the time i was 16, but each time it was put down as being IBS. from 16 to 18 i had regular stomach pains etc but this was put down to the ibs and period pains, during this time my brother was severely ill and diagnosed with crohns. fortunately I was lucky enough 1 day to see his GP who sent me to see a gastroenterologist.
At 18 I was diagnosed with crohns at the splenic flecture, and responded well to meds accept for steroids. After several attempts of steroids, a new gastro told me I was intolerant and said they gave me a steroid psychosis - which explained a lot.
I was on mesalazine for years. i also took azathioprine for 10 yrs and then suddenly reacted to it. I then went on to mercaptopurine alongside the mesalazine which worked relatively well, having flare ups every 2 yrs. 10
10 yrs ago (at 32) I developed sepsis during a flare and it was found i had crohns from the rectum, throughout the whole large bowel and 10 cms into small bowel. I was started on infliximab infusions which worked wonders. after 4 yrs the infliximab was stopped and I had another flare, and my weight dropped to 6 stone and had to have special drinks as I couldnt eat solid food. infliximab was started again, but i developed drug induced lupus after 12 months, so the infliximab was stopped again.
Once again I had a major flare up and I faced having an ileostomy. I decided to try another biologic called humira, which I took until last year. It was stopped as I had needed an operation to release adhesions, and a colonoscopy showed I was i remission
the pains in my joints started approx 10 yrs ago, but it wasn't until about 5 yrs ago I was diagnosed with enteropathic arthritis. I was then put on sulphasalazine. My main joints affected are my knees, but on bad days my ankles toes wrists and fingers can really hurt too
Im currently off all meds due to a sudden reaction to an increasing dose of sulphasalazine (bowels playing up again) which is causing me urticaria. At the moment its a case of trying to find out what is causing these hives - I know it definitely food colourings, which unfortunately are in a lot of medications. as my weight is relatively stable, and Im overweight, my gastro isn't too worried. Im having blood tests every 4 weeks and have done a faecal acalprotectin so they can monitor the inflammation and act before it gets bad.
Thank so much Willow for your sharing. I have recurrent spiking fevers, abdominal pain, infections since I was 4-5 years old. I have headache, fever and abdominal pain without unknown reason in my adolescence. I have imbalance estrogen that caused me having tumor and recurrent cysts since 2009. I got tumor surgery and hormone therapy in 2009-2014. My oncology said I was free from hormone therapy but I have to take hormone supplement throughout my life. In 2012 I have recurrent headache, fever, rashes, ulcers in my mouth, tooth decay and myalgia. It became worse since 2014. In 2015-2016 I had kidney stone and suddent blind eyes suddenly twice. I met many doctors but they couldn't find the correct diagnosis of my disease. I have horrible symptoms last year. Finally last month there was a rheumatologist professor found my disease since my childhood. It was AOSD. Based on my antibody test for RA told me that I have RA too. Unfortunately he gave up to my condition as I was unresponsive with common drugs here. So I have to fight myself with my illness therefore I joined this community.
Yeah, so lucky you living in UK. Hope you get remission forever 😇
Many autoimmune diseases are affecting people in developed countries rather than in developing countries. Therefore autoimmune diseases become an uncommon disease here.
AARDA say that 50 million Americans suffer from autoimmune disease. An estimated 2.5–3 million people in Europe are affected by IBD. Therefore your government and doctors pay much attention to people with autoimmune diseases. But I have difficult to find forum or community of patient with AOSD as I know it's a very rare systemic autoinflammatory, not so many like people with autoimmune diseases.
So unlucky me to have a very rare AOSD with RA with my condition unresponsive to drugs and no support from the government and doctors here. But I keep trying to enjoy it even though my days are full of pain 💪
the faecal calprotectin identifies inflammatory cells within the stool a level of 0-100 is normal to IBS. over 100 is considered inflammatory bowel disease
My rashes are different with rashes of abnormal liver enzymes. My rashes are salmon-pink or pink rashes. It is macopapular rash of AOSD. You can read on this link about rashes on AOSD:
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