Hi Clo. You will be aware that I have faced this same situation with my Rhuemy, less so my GI, for 3 years and only recently have convinced him that my issues are either extra intestinal or...
How are you doing these days GloriaD.....are your issues confirmed UC / CD / Gerd yet?...
Thanks for the advice and the hope UCyousee. Can I ask if you tried Methotrexate at any point? Maybe you are sill on this? How did your UC and SpA respond to oral and / or IV steroids?...
No i think not. Keep imuran for the moment and see will the steroids get rid of the extra intestinal stuff. I'm frustrated by how slow he has been to react and my guess is that imuran has run it...
Yes thanks. The IV steroid pack seemed to have instantly gotten rid of most of the extra intestinal symptoms. Some symptoms literally fixed themselves during the 90 min infusion. My thumb was very...
So 3 years nearly to the day after I first report symptoms to my Rheumy he started treating me for "inflammatory excesses" of IBD. In the end he did not go with Mtx but rather spoke to the Gastro...
For myself I'd actually prefer to have an inflammatory arthritis diagnosis than simply degenerative spine OA disease. There is not much they can do for the latter except manage it and in extreme...
i know how you feel....you sometimes wonder are the bowel issues secondary to something else...rather than it being extra-intestinal is it really extra-articular or extra-ocular. My bone and...
That is very interesting poppydoop. I have had to fight 3 years just to get a broad diagnosis so i can understand what your sister went thru. I definitely want to work thru all of my options and see...
Straydog...I do find your post very negative even though I imagine you were trying to be helpful. I never said it would cure my condition. In the same way that starting a biologic is no guarantee...
Thanks for that clo. I'd rather start a biologic than MTX or else add hydroxychloroquine to imuran. I had said that to my Rhemuy many times. He contacted me 2 weeks ago and was all action about the...
Yes. See my posts on the main UC page on this issue. Ultimately it is an inflammation problem. I too am on Entyvio and seem to be in bowel remission but have been diagnosed with an inflammatory...
thank for that Clo. Had did they wean you onto MX? My Rheumy says it can take up to 6 months to have full effect. Were you bridged to the end of that period with steroids?...
The rheumy was unable to label the inflammatory arthritis. Technically it is an inflammatory arthropathy at this stage. Blood test, scans, and presentation are all inconsistent with it being of one...
I guess I'm asking about Imuran in relation to MTX....right now I have a lot of Imuran built up in my system and I'm wondering does this need to be lowered over time before a full doze MTX can be...
Thanks for this suchatravesty.....can i ask how did they get you onto MTX? did they stop imuran immediately and start full dozes of MTX?...also how long until the MTX fully kicked in?...
Thanks for all the good wishes. I think the GI and Rheumy will start treating me next week and altering my treatment plan. I have spoken before about my frustration with the Rheumy in believing my...
Vedo = Vedolizimab = Entyvio The Rheumy raised it as a possibility only but will defer to the GI. The GI has never found firm evidence of CD on any scope, biopsy or scan in 12 years. I'm still...
Quincy, The Rhemuy said he would treat it as a flare up and take a conservative route. Start IV steroids and bridge to Methotrexate while weaning me of Imuran. Long term he hopes Methotrexate will...
In 2013 I had a bad flare up of joints that preceded an even worse bowel flare up. I was hospitalized and put on IV steroids and imuran and achieved a complete 6-year remission. In 2019 I experienced...
I find my GI very very good. But clearly I have extra intestinal stuff going on. I find my rheumatoligist doesn't give me much time or credence because I'm not presenting with swollen and stiff...
Thanks you for your reply CCinPA....I admire how you were so persistent and how much detail you have given of your experiences....
What are your best tips on how to advocate for yourself and be forceful with doctors when you think they are not taking you serious and or when you feel something is wrong but they dismiss it? What...
very much delighted for you....what was ur recent blip put down to then and high FCP reading?....a stomach bug?...
Still not feeling great despite minimal bowel issues. I have some joint, skin and eye stuff mildly going on as well. I'm on Imuran and Vedo. My FCP is normal and my blood work looks amazing except...
The C&C website is great for generic info....but none of us are typical IBD cases and I too find their info is in no way tailored to those who seek answers for very specific problems. HW's archived...
I would immediately get a calprotectin test to see what the levels look like, even if good and feeling better i would repeat the test in a month...
has anyone had a ct scan miss stones and been diagnosed later....can these things go undetected for years?...
I suspect I may have one....what were your symptoms clo and did they image you to confirm diagnosis?...
I try not to engage on these topics but it is clear that threads are posted to bate people into reply and to keep the controversary going. Be prepared for plenty of more threads with 'Anti-oxidants'...
I'm getting confused about who is who! Did pravda have UC ?...
It;s actually morphing into a Harry Potter / Voldermort sequel.....he who shall not be named has returned!!!!...
I'll bet you a decent cup of tea PD that sometime in the very near future this gang morph to reddit...
I wonder has there been the same discussion with similar vibes and tone on the redit UC, CD, IBD boards about this pravada protocol....maybe iPoop can let us know???...
Has anyone had bloodshot eyes as a complication of their UC? If so was it related to your flares and how did you manage it? Thanks...
Clo, Can you say more about how the scarring affected you? I guess this was post ur surgery....was it different symptom than being in a flare....also the heat intolerane is interesting....i have that...
what are your symptoms of pouchitis?...
i know u are a 30s guy keith....how has the hip replacement affected u in terms of being active for sports? can you still run etc? also did u suffer from non-pred related ExtraIntestional...
im interested to know Keith why you thought taking Cyclosporine was a mistake in hindsight? was it that surgery was ultimately ur path and it delayed the inevitable or did it contribute to the hip...
You must have tried Pravdas protocol a long time before it became popular again in 2022....did you have any significant success with his methods over the years Old Mike?...
Thank you beave. So interesting. I think our 3 cases are very similar but perhaps you are a few years ahead of us. What symptoms did you have with the mild undiagnosed onset of your CD? Also do i rem...
Thats very interesting PD. Thanks for sharing. What were your sisters symptoms? Was it a case of her being asymptomatic for a long period or else having symptoms but not finding them on normal...
Thanks GloiraD and beave. Your story is interesting and maybe similar to ours Beave. Can you say more about how you were diagnosed with the SI ulcers. You say you were asymptomatic at the...
Until your symptoms improve...are you still on Entyvio as well?...
Similar to you in that respect. Do you believe the ulcers in the small intestine are causing your left sided issues? And that Entyvio is treating the colon but not the IBD higher up?...
Even a thread asking for calm and a bit of grown up awareness is now under scrutiny for breaking the rules and 'they said this, we say that'........
I can see why people no longer use HW...
I am stable but like you have not improved. My blood markers seem to indicate that I am in remission but I too have constant left sided pain and some other joint issues which no doctor seems sure how...
They mention in this paper that FCP may not be a good indicator for "deep crohns" and that scopes and CT scans may miss deep crohns....im guessing deep crohns is where the disease is high up in the...
Has anyone any experience with silent IBD? If so I'd be interested in hearing your stories... https://academic.oup.com/crohnscolitis360/article/3/3/otab059/6373966...