I am now pleased to say I am now in remission for the 2nd time.
The two drugs that I used to achieve remission were Ritixumab and a trial drug called abacept.
I have now been diagnosed with Crohns collitutus disease, I have been told this is not connected to vasculitus.
Have been told it could be connected to Ritixumab use, and that having one anti/ immune disease leaves you vunerable to other anti-immune diseaes such as Crohn’s.
I also had covid in April and had to take those horrible anti-virals. My stomach was never right after that, again they cant rule out if covid is the cause of diagnosis of Crohn’s.
I have decided to go on a gluten free, diary free diet, with lots of green juicing. And stay away from processed food, so far so good no flares or stomach issues.
My Crohns consultant is discussing my case, of what options of medication to give me and are liasing with The vasculitus team at Addenbrooks.
I do no wish to go on further treatment to treat Crohns as I Have recently gone into remission for vasculitus and finally off steriods.
But appreciate Im not an expert, the Crohn’s specialist wants to avoid ‘scaring’ in the intestine that is inflammed to avoid further damage which would involve medication.
Does anyone have vasculitus and Crohn,s, I would appreciate any feedback.
Thank you
Dawn
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I have GPA and Crohn’s too. I had GPA for several years before Crohn’s was added to the mix officially at the beginning of this year.
Similar to GPA, it is not possible to say exactly why some people get Crohn’s and some don’t. There are some risk factors though that we do know are associated with being more likely to be diagnosed with Crohn’s, like for example having a parent or sibling who has been diagnosed with Crohn’s. Crohn’s in an auto inflammatory condition like GPA, and in general if you have one auto inflammatory condition, you are more likely to develop another one than someone who doesn’t have one.
I can understand this must be very frustrating for you if you’ve got your vasculitis into remission and finally got off steroids. However if you don’t get your Crohn’s under control it could set your vasculitis off again, as both are systemic conditions (in addition to any direct consequences from the Crohn’s like intestinal scarring etc.)
As you know, the treatment for Crohn’s has a lot of overlap with GPA in that azathioprine and pred can help both and that both conditions can be treated with biologics (Rituximab is not normally used for Crohn’s though). I’m glad your GI is talking to your vasculitis team, so they can put a plan together.
Sometimes they can give a different type of steroid (budesonide) instead of pred to start with. Budesonide is different to pred as it works directly on the small bowel and colon and generally has fewer side effects. More details: crohnsandcolitis.org.uk/inf...
My case was a bit different to you, in that I my GPA wasn’t in remission but was fairly stable when I was diagnosed with Crohn’s. This meant GI and rheumatology were agreed on low dose pred and azathioprine and GI added a 5-ASA to start with. (My Crohn’s is moderate). I’ve got a review next month.
GI are generally very hesitant to keep you on steroids if you have IBD, so I would suspect your doctor is talking about a short course to start with. Be honest with them about your concerns; they have a lot of patients who want to avoid steroids but sometimes they are needed as they are quick acting.
Usually they’ll put you on a starting treatment then get some scans and possibly a scope and review with you to discuss whether the treatment is working and if it can be decreased or needs to be increased.
Crohn’s & Colitis UK has lots of really useful information about all aspects of Crohn’s. They also have a great appointment guide that’s useful for whenever you see the IBD team. Also be prepared for a LOT of questions about your bowel habits (basically every time you talk to someone in the IBD clinical team). Link: crohnsandcolitis.org.uk/inf...
Diet wise, I’d be wary of making significant changes without talking to your IBD nurse or consultant first but making notes of your symptoms and a food diary can help you identify trigger foods. In general IBD cannot be controlled by diet alone but some people find it helpful to stop eating certain foods. I can’t say diet makes much of a difference for me. More details: crohnsandcolitis.org.uk/inf...
This might not be what you want to hear, but I would say please don’t ignore the Crohn’s. I spent a week over the summer in hospital because of mine and I wouldn’t wish that on anyone. I also have two close friends with Crohn’s and the consequences of severe untreated Crohn’s are significant. It will take a while to get in under control, but there are treatment options and you can still have a full life, like you can with vasculitis. It’ll just be a bit different (especially when you’ve just been diagnosed).
Thank you so much for taking the time to message all that information, and I appreciate the comments.
I think I need to accept that unfortunately I may have to go on some kind of treatment , I think I have been in denial thinking I can control this with my diet alone.
I have only had a telephone consultation and waiting for feedback after they had a ‘team meeting’,
I will indeed contact the ‘Crohns /colitis organisation.
Don’t beat yourself up about it, it takes a while to get your head around.
I think a lot of people look at diet first because it makes you feel more in control. See what they come up with, and chase your IBD consultant if you don’t hear back soon.
Hi, I’m sorry to hear your extra issues on top of GPA. May I just ask what led you to get a diagnosis of Crohns? Were you getting specific symptoms or did you get markers in your blood tests? I ask because I have been suffering from severe stomachache for a while now, so just interested to hear your experience. Many thanks 😊
My GP picked up that I was anaemic from my monitoring bloods for GPA and determined GI bleed was the most likely cause. They had ruled out other causes so I was sent for scopes. In hindsight I had been having mild symptoms for a while but was ignoring them (not recommended). Not everyone has symptoms though.
If you’re concerned it could be Crohn’s, ask your GP if they will run a calprotectin test. It’s a stool sample test that gives a good indicator of whether you likely have a form of IBD (Crohn’s and Ulcerative Colitis are the two most common forms). Colonoscopy is then usually used to get a diagnosis once you’ve been referred to GI. They will take biopsies during the scope.
I’d keep a diary of your symptoms and general activity / stress levels to show to your GP as well. GPs are usually fairly clued up on IBD as it’s fairly common (“uncommon” for Crohn’s vs “rare” for GPA). If you are female, they will probably also want to rule out any gynae related causes.
Some pages that may help you with more detailed advice:
Hi lve had GPA for over 14years, its stable but only with low dose steroid and azathioprine. Having a colonoscopy next Friday.Have had the c -stool test came back with a high result hence why I'm having the scope test soon.My daughter has had Crohn's for 14 years she was diagnosed a month after my GPA. After she had a son nearly five years ago she has been symptom free , medication free and now has to see her consultant once a year. Time will tell.
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