Behcet's Syndrome Society

Probable Bechets newbie

Hi everyone,

5 years of ulcerated colitis then total colectomy and J Pouch created. 20 years of ongoing pouchitis has followed this surgery . 9 DVTs and a venal byepass. Autoimmune Anemia and severe headaches put down to Trigeminal Nueralgia , severe ongoing tendon and joint problems ,ongoing spinal problems with loss of feeling in left foot and left hand, ongoing eye problems

Just been told by new Rheumy that more than likely its been Bechets all along .........great!!

At least now i have answers and they will hopefully refer me to see a COE specialist for definitive answer and start me on meds/ treatments to try and control the many side affects of this syndrome

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Hi S!

Welcome, how do you feel getting a possible BS or BD diagnosis? It sounds like you have been through so much.

I want a colectomy; I have neuropathy of my colon. How did you feel after?

:)

Ash

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Hi Ash (Belle)

Thanks for the welcome, i still dont know what I think of the Bechets diagnosis...relief i guess that i might finally have answers as to why i have suffered 20 plus years of chronic ill health.

Its felt like one thing after another , I've often thought how incredibly unlucky I've been to suffer such a wide range of illness

At least now it looks like they've all been linked....just glad this new Rhuemy I'm under put 2 and 2 together so quick

As to your question about colectomy, i had no choice regarding mine.

It had been left so long i had toxic megacolon...i had illeostomy for 18 months which was hard to deal with, but since the J Pouch was created its been easier

Its just the ongoing Pouchitis (inflammation and ulcers ) in the pouch has been hard to deal with . which now looks to be linked to this Bechets...hopefully once on right treatments / medication it will ease.....im hoping anyway

I really hope you find relief with your ongoing fight

Kev

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Hi there, welcome and thanks for posting. Are you in the UK? Have you had a look at our website and our various factsheets? behcets.org.uk We can send leaflets if needed to help you raise awareness with family and friends. All the best and if you need anything please email us: info@behcetsdisease.org.uk

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Hi.

Thanks for taking the time to reply

I am in the UK , im from Swansea, in South Wales

I have visited your Bechets.org site and have read a lot of helpful information on the site regarding this syndrome/disease and its impact on both physical health and emotional/mental well being

I am hoping my Rhuematologist will now consider refering me to one of the Centre's of Excellence in the near future although i dont know how easy this will be as I'm outside of England NHS where they all seem to be

I will definitely take you up on the offer of further information for myself and family , and will be in touch via email with my details for this

Thanks

kev

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Thanks Kev, look forward to hearing from you and good luck with the referral. Look out for future dates for group get togethers in south wales. Also the AGM and conference will be in Bristol next year. Kind regards.

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