Hi,
I have PA.
I suffer terribly with diarrhoea, have done for years and after countless Colonoscopies, Endoscopies, Capsule Endoscopies, blood tests, examinations there is still no definite answer as to why I have it to the extreme I do. They have rules our Crohns and Colitis. After one endoscopy they said my bowel was covered in psoriasis lesions but another then said I had ulcers in my bowels.
My life is not my life anymore, I've stopped socialising at work and with family, no longer go for days out as it means planning my journeys by the toilets I can stop at and bringing an adult version of a nappy bag with me for when I have mishaps.
Its come to the point that I can no longer cope and if I do want to go out I don't eat until I am home again, as you can imagine family meals out are a treat…..not!
Normal over the counter medicines do not help, the prescription medications Ive tried so far do not work and there are days where I am taking up to 12 modicums just to stop me from going to the toilet.
I was wondering if there is anyone that has a similar situation to myself, if so, could you share what diagnosis has your specialist/GP given you, medication you are on and if you have thought about having a colonostomy bag - this is something that I have been thinking more and more about.
Thank you for reading.
Posted Sun 14 May 2017 08.37 by Scottie Dottie
My story other way round to yours. Had colitis and ileostomy op 41 years ago. Diagnosed with PsA 1 year ago with symptoms for 9 years. Surgery for bowel disease is usually the last option these days. Hope you get the Meds and treatments you need soon
Posted Thu 28 Jun 2018 23.12 by Pam
Yes know it all so well. I have an enormous family history of Psoriasis and PsA but nodbody seems to understands us. The reason is obvious to me we are seronegative and unless the heart comes into the equation which mine doesn’t, nobody thinks your ill. It’s that simple. I am 71 and born ill and still nobody understands this. I think I will be fighting the medical profession, the profession I so wanted to be part of age 6 until I die. I admit I am very complicated. And that doesn’t help but with very few markers I am lucky to still be able to fight. I think they have developed new pills/pessaries. I am on Sulfasazine and for me it works, no it’s hasnt given me drug induced Lupus I was born with that from my father.
Posted Fri 29 Jun 2018 12.12 by Pam
Hi I am finally going to the Eastman on Thursday next week. It’s only taken 71 years of my personal research. I have a rare type of Ehlers-Danlos hence the Eastman, then PSA and psoriasis we had 4.5 babies one killed at 16 weeks by GP error then Robin a cot death as I have Lupus. My father had RA Crohns and EDS. I am RF neg but I have RA too. Any help with a drug after the Eastman would be appreciated at the moment I am on MTX 25 mg infections and Sulfasazine.
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