Living with Crohns and pain in the butt

[San_30]

Hi im new to this, but heres a little about me and how crohns has affected my life so far.

Im a 29 year old from england and was diagnosed with Crohns when i was 18, since then ive had a panprocolectomy in 2010 which has left me with a permanent ilesotomy, since the op ive had a had a sinus develop in my back passage which is non healing, i have a district nurse visit my house every day to pack the wound. My colorectal surgeon has now passed me to a plastic surgeon to try and fix it and that invloves another major op that i dont want. So i now have to come to terms with living with this open wound for the rest of my life.

This is scaring te life out of me and ive now got to the point wherebim findin it difficult to cooe so ive been referred o a counsellr

Inwas wondering f anyone else has been through the sane and if so how do ou ope?

 

[Boplanman]

I have had this and am doing good! What do you need to know??

 

[San_30]

I seen a plastic surgeon last week who told me there is an operation called a gracilis muscle flap procedure, it involves cutting me from my inner knee to my thigh to remove the gracilis muscle to fill the open wound and reconstruct my bottom area.

I really dont know what to do, since the age of 21 ive had at least one operation every year, so i dont want to be left with another huge scar when its not fully guranteed to work. And if i choose not to go ahead im left with a open oozing wound for the rest of my life where the nurses have to come every day and pack it.

How do you cope? This is all just becoming too much for me to handle. Does yours ooze?

I have pain aswell, some days i wont feel anything, other days it feels like a golf ball is stuck up there! Its always becoming infected aswell.

Its affecting a lot of my life, ive been with my boyfriend for just over 3 yrs now and its starting to affect that and the intimacy side of things is becoming a massive issue

Any suggestions would be much appreciated