Hello, I am a 25 year old male, and my GP has recently referred me to a vasculitis specialist at UCLA. From what I have read, vasculitis of the GI tract is very rare. However, I believe that there is a possibility that I could have it. I have had terrible GI problems all the way from my colon up to my esophagus for over 5 months now. My symptoms include weight loss, weakness/pain that comes and goes throughout my body, moderate abdominal pain, swollen fingertips, ulcerative colitis, 3 stomach ulcers, esophagitis, pulsating/throbbing in my ears and sinsuses, headaches in the back of my head, recently had a small purplish rash on my arm that went away, and i experience muscle twitching.
My question is; how rare is vasculitis of the GI tract? I've also read that it usually has a high mortality rate. Is there anybody on here that has GI issues from their vasculitis? I am just worried and I do not see the vasculitis specialist until Aug 19. Thank you in advance.
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MattC13
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Vasculitis of the GI Tract is not a disease in itself although it does occur as a symptom in certain types of vasculitis. It is potentially very serious and needs urgent attention. You need to see and talk to a doctor who knows a lot about vasculitis. Are you in the UK?
HI Suzy. No I am in USA. I have read that GI involvment could be very serious and my symptoms are only getting worse. I am seeing Dr Tanaz Kermani at UCLA. To my understanding she is very knowledgeable regarding vasculitis. It will just be a very long week for me until I do get to see her. Is GI involvement so dangerous because the mediction you take to treat vasculitis is hard on you GI tract?
The worst part is that I have been asking different doctors to look into the possibility that I could have vasculitis for months and they have all ignored me. I finally found a GI doctor who listened to me and said there is a chance that I could have it. I don't know how well known this disease is in the UK, but it doesn't seem to be very well known at all in the states. If something bad does end up happening to me I will look back at the 2 1/2 months that I was asking doctors to look into vasculitis. Doctors in the states seem to think you are healthy if your blood work is normal. At least the ones I have dealt with.
Tell your doctors that my blood work is almost always normal and that this is not unusual with many vasculitis patients.
However, you need to have a blood test for a variety of autoantibodies, incl. ANCA (there are c-ANCA and p-ANCA). This is done in specialists labs and is not usually part of the routine blood work.
Hi would be interested to know how you have got on. I have ANCA positive Vasculitis,and have been out of hospital for 3 weeks during which time I have had constant problems with my bowel, pain and wind. I have not yet seen anyone specifically about these issues as to whether it is medication or the disease itself.
I hope you had a good visit with the expert by now and could clarify many if not all your concerns.
My initial symptoms were GI related, a routine test showed that I had high liver enzymes and ANCA were found in my blood and the diagnosis was autoimmune hepatitis. I had lots of digestive problems, and an eventual colonoscopy revealed ulcerative colitis. This was 15 yrs ago and while the liver has recovered, the colitis has been with me to this day.
I was diagnosed with GPA (ANCA vasculitis) six years ago after I developed ENT symptoms, esp. throbbing pressure in my ears, temporary hearing loss and seemingly endless episodes of vertigo. While I could lead a pretty normal life with colitis, the GPA comes with fatigue and weakness and muscle loss. I also have eye involvement (keratitis) from time to time which responds very well to cortisone drops.
I have been told that it's all connected and that the treatment is basically the same.
When I was diagnosed with colitis all those years ago I was not given any cortisone or immune suppressing medication only mesalazine which I take since then.
Since the ANCA vasculitis diagnosis I am on a variety of immune suppressants plus cortisone and the colitis symptoms have definitely improved. I still have GI pains and cramps(colics from time to time but nothing in comparison.
Last winter I started Rituximab/mabthera treatment which has been most effective - I have had just one day with vertigo whereas in previous years I had one lasting up to 5 days every 6 weeks.
Have you had a recent colonoscopy? Gastroscopy? Any hearing trouble? Inner ears?
Hello Carroll. I can seem to relate to you as well although it seems like i have more GI problems than you. I also have ear pressure/popping with pulsitive tinnitus, sinus pressure, and weakness/pain throughout my body. I definitely get mild vertigo as well. I also have elevated liver enzymes. I went to the vasculitis specialist and she told me she does not believe I have vasculitis because my bloodwork was normal(other than liver enzymes). She calls herself a vasculitist specialist, and she claims I don't have it because my bloodwork is normal?
It is shocking to me the little amount of knowledge doctors have of this disease. Even so called vasculitis "experts" seem to not know much about it. I begged her for an angiogram of my abdomen but she refused. I am becoming more worried each day that passes. My GI symptoms continue becoming worse and my flares more common. I have an appointment at the Cleveland clinic with yet another vasculitis specialist named Dr Villa-Forte.
I don't believe I will make this out alive if I don't start treatment soon. It has been 6 months since my 1st symptoms started and nearly 4 months since I have believed to have vasculitis. Sometimes it seems like there is a conspiracy against me with these doctors. I haven't even received an angiogram yet, because they refuse to order me one cause of my semi normal bloodwork. I received an endoscopy and colonoscopy 5 months ago. I have another one scheduled in October. How long did it take you to get diagnosed and was colitis your only GI symptoms? How am I able to get an angiogram without doctors orders? They are putting my health at serious risk by relying on bloodwork so much. Best of wishes to you
First of all, don't get yourself all worked up. It will only make things worse. I have met fellow vasculitis patients who had to go through years (!) of consultations before getting the proper diagnosis. There is little evidence that you will die of it. The life threatening risks are when vasculitis affects the kidney and/or lungs but this would certainly show in your blood work and symptoms and none of the symptoms you have described indicate that. While GI tract vasculitis involvement can be serious, if you have normal blood results, it is highly unlikely to be that serious. The things to watch out for re: colitis/GI are high inflammation markers, which are routine parameters in any blood test, and low iron/ferritin levels which may not be done routinely but you should be able to ask for it.
I had problems with my digestion for several years before I was diagnosed with colitis in 2002. My symptoms were mostly painful colic and cramps, diarrhea and/or constipation and initially, I tried all sorts of dietary changes with no success. My first colonoscopy in 1999 only showed that I was not celiac - which was a tentative but wrong diagnosis.
At around that time, a routine blood test revealed elevated liver enzyme levels and further diagnosis showed that I was ANCA positive and a liver biopsy revealed liver damage. I was told that I had autoimmune hepatitis and because at the time I had never been seriously ill and blissfully ignorant about medications I refused to take cortisone. Instead, I went to a naturopath who prescribed silymarin, a herb-based drug which has been shown to be successful with general liver disease. I changed my diet, stopped drinking any alcohol and did a mindfulness course. Luckily, my liver recovered but I would NOT risk this treatment a second time.
About 10 months later my blood levels of iron and ferritin (iron storage) were found to be very low which usually indicates internal bleeding. Shortly after that I had the first classic colitis symptoms, namely blood stools and another colonoscopy confirmed that I had ulcerative colitis throughout the large intestine, which is when I started the mesalazine treatment I am still on to this day. I have had annual colonoscopies since then. Officially, I am in remission (regarding colitis) for the past 4 years. But I have many scars throughout the intestine which make digestion difficult. I often have heavy cramps and colics and the odd day here and there when I am too tired to go to work. I am still careful with my diet and I don't drink alcohol to keep the liver healthy. I have had two flares of autoimmune hepatitis since 2010 but by then I was already on immune suppression so it was basically all covered.
When I started to have ENT symptoms in 2009, combined with extreme fatigue, I already had a history of autoimmune disease(s) so it took only three months to confirm the diagnosis and finally start immune suppression therapy.
The ENT symptoms were quite sudden and heavy and surprised every ENT expert I went to - three in total, the last one referred me straight away to an immunologist/rheumatologist.
I never had an angiogram but I had several MRIs (head, inner ears, gall bladder, intestine, liver), too many colonoscopies to count, lung function tests, various ultrasounds (heart, lung) and several lung x-rays.
The vasculitis diagnosis was confirmed by the presence of high cANCA autoantibodies plus PR3 antibodies (they come with ANCA and are usually tested for automatically) and my symptoms as well as past medical history.
My GP checks my blood every two months for signs of inflammation and liver involvement. I see the rheumatologist four times/year for a lengthy chat, ANCA blood test, ECG, lung function test and kidney ultrasound/urine test.
The immune suppression treatment has helped enormously but life has changed. Six years of cortisone means that my muscles have weakened. I used to run marathons, hard to believe. I no longer work full time. But after a slightly too long visit at the self pity stop I have found my feet again and make the most of it. Which is my advice to you: Do not fret too much, be proactive and inform yourself, don't fight with doctors. I know it's a hard job to find the right one(s) but don't give up. Get in touch with your national vasculitis foundation (they have a facebook group), contact the Mayo clinic helpline and stay away from panic/fear mongering. Meanwhile, look after yourself, lots of rest and healthy food and if it all gets too much, distraction always helps.
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