Back in July I posted about heavy rectal bleeding and stomach pain, and that I have Crohn’s disease and previous bowel surgery history.
everyone was very kind and offered really helpful advice.
i ended up having a couple of hospital stays, bloods that’s showed inflammation and high white blood cells and told I was in a flare.
flexisigmoidoscopy showed my rectum was fine so they said bleeding must come from higher up, I was discharged as they said nothing more they can do and referred me to another hospital for a pill camera in my small intestine (I have no large intestine).
i have received no letter with an appointment as of yet, and have been told I’d get call backs when trying to get through to the reception there.
anyway my doctor called after the hospital to say she wanted me to have more bloods so I did, and she said for three months my inflammation levels have been climbing, but said to wait for this appointment
for the past three weeks I’ve been feeling exhausted, and on and off bleeding but have just got used to it. The thing is I’m so tired that even standing for too long I need to sit down and I’m oversleeping a lot of the time. I’ve been putting this down to the fact I’m currently overweight and have been eating quite stodgy because I just cannot deal with fruit and veg at the moment or im on the toilet - though jacket potato with coleslaw I can handle so that’s basically been my go to.
today I’ve been to the toilet three times and each time has been 30 mins - hour of just nonstop.
tonight I’ve just spent 60 minutes on the toilet, noticed blood clots and looked in and the toilet water looked like thick, dark red blood. It was no longer even that thin water texture it just looked thick. My stomach and back feel sore so I’m just resting on the sofa.
i don’t know what to do - I don’t have an IBD team still even though I’ve been referred, no direct contact at either hospital, GP is closed, and I feel it’s pointless going to hospital when they’ve already discharged me and said to wait for the appointment because there’s nothing more I can do. Wanting to avoid it as much as possible too because I have a little one who is autistic and honestly being in last time has put him
right out of sorts ever since it’s given him massive separation anxiety.
i have nowhere else to turn and I know this isn’t a medical forum but would appreciate any advice at all or experience from anyone who’s been in the same boat because I’m just at a total loss of what I can actually do!