New diagnosis

[Jane yazdanian]

Hello
I am 50 years old. 5 days post seton surgery for a complex fistula. A year ago I had what I now know was a flare up. Awful rash toilet all day and night. Sore mouth. Raised rheumatoid levels. Symptoms persist until June when I developed a 10cm anal abscess and sepsis. Emergency surgery and home to recover. Life was difficult and despite 3 more a&e visits and another abscess no diagnosis.
eventually in September I saw a consultant that confirmed anal fistula. Fast forward to last Saturday. I was told post op there was extensive scar tissue and complex Channels. I am now back in a&e waiting to see a doctor for pain relief. I expected a little pain but this is another level. Iv had 5 babies without pain relief so I know. Is this normal. I can not sit stand lie it’s hot heart is racing. And no follow up for 8 weeks ? The picture is how I look with a flare up normally completely rash free

 

[my little penguin]

https://bmcgastroenterol.biomedcentral.com/articles/10.1186/s12876-021-01801-w
See Gi and rheumatologist
Butterfly rash is something that can happen with lupus (and other things )
But you can have fistulas and a different rheumatoid disease together at once
Have you had a scope /imaging by Gi ?
Seem rheumatology for the rashes ?

 

[Jane yazdanian]

I am now waiting for scope. MRI showed fistulas
They didn’t mention the rash is rheumatology
I feel like they have been ticking boxes and not puttting anything together
If anyone has ideas for pain relief that will be great.

 

[Scipio]

I agree with my little penguin. You should try to consult with a rheumatologist along with your gastroenterologist. That butterfly rash coupled with raised rheumatoid factor levels is suspicious (but by no means certain) for lupus.

 

[Jane yazdanian]

Ok thank you