EDS, Hydradenitis Superativa, Endo & IBD PLEASE HELP ME

[Emmahammer]

Hi you lovely people. I'm generally a lurker but I think it's time I asked for some support. A lone wolf doesn't get much guidance otherwise. I'm a friendly & caring person but I've been dogged down with illness my whole life.

I'm sat here and not sure if I should be in hospital.

For 6 years I've gotten nowhere with my local doctors and hospitals. I've tested positive for calprotectin each time I flare up but no one seems to really care and I'm desperate to get a full diagnosis. I've been let down because we have lost so many consultants so my appts just kept being cancelled. I'm now at my wits end. As you can see above, I also have EDS, hydradenitis superativa (but my dermatologist has recently queried crohns as I may have a sinus forming), endometriosis (bowel & bladder) and other lesser AI diseases.

I'm currently having what I would call a mild flare but the symptoms are different. This time there's no blood but I've have the runs now for 4 weeks. On Friday I had massive cramps and passed a lot of oily silty dark poo. Ever since then, when I eat a meal, I'm cramping within 4 hours and passing a ribbon thin soft poo that's full of mucous within 8-10 hours. My body won't stop twitching and I'm even worried I may have a vaginal fistula. The skin around my vagina has been raw for several months and the last couple of days when I've sat on the loo and been windy it really does feel like it's coming out of my vagina.

Each day the cramps and bloating is getting more wearisome. I've been given buscapan but it doesn't seem to do anything.

I'm not passing blood like I've done in the past & the pain isn't as bad as it has been either. It's just a bunch of new symptoms that's worrying me.

Can anyone tell me what they think may be happening? Should I be in hospital?

Thanks so much in advance xxxz

Emma xox

 

[ronroush7]

Welcome, Emma. I am sorry for all you have been through. I think you need to nail down a doctor who will see you and give you a diagnosis. Please let us know what you find out.

 

[Jabee]

What have your doctors said about the blood in your stool previously? Blood and raised calprotectin generally warrant a colonoscopy, upper GI series, endoscopy, and possibly a CTE or a capsule endoscopy. What tests have you had? Have you lost weight? Have you had blood tests for inflammatory markers? Do you have a good GP who can order at least the blood work for you? Do you have an appointment with a specialist coming up? Sorry to ask so many questions, but I think it would be a good idea to get tested since you have had blood in your stool and are now in pain. Hopefully a good GP can help get you to a GI and you can get the testing done. Tests aren't always conclusive by any means, but you will get some more information which your doctors can use to help diagnose and treat you.