consistent rectal pain post chemotherapy for 11 years

Hi Cancer forum

can anyone please relate to my condition.. despite online searching for like minded sufferer's, i remain alone until maybe now after joining this forum ?  suffered AML in 2009, had 7 courses of Chemo which left me numb on my extremities, but also up my bum !  after 2 years of being treated for constipation i was diagnosed with intersusception, a kind of intestinal kinking, which obviously meant any attempt at defacating meant having to digitize to get the stool out.. in 2017 i was offered a home irrigating kit as i dont pass stools without flushing. apart from this i have a constant need to sit or lie down as i have a feeling of rectal pressure which builds until i cant bear it any longer and have to sit down. however unless its a shoe shop, there are not many chairs in shops. i use a walking stick with a flip seat attached but this only eases my pain to 4/10 until i find a real chair or get home. i have had surgery at 2 nhs trusts and no other offer. im currently pricing privately with a view to have my rectum removed and a stoma placement with a hope of becoming pain free. can anyone relate to my symptoms please ?  

  • Hello and thank you for your post.

    I am sorry to learn of your ongoing symptoms, and can appreciate that this is difficult to cope with on a day to day basis.

    Unfortunately, we are not able to help you in great depth regarding this, as it not our area of expertise.

    We are aware of St Marks Hospital in Harrow, London. This is a world renown NHS (also Private Patients), centre for bowel disease/disorders. You could ask to be referred there for an opinion. 

    www.stmarkshospital.nhs.uk/

    Wishing you the best,

    Vanda