Who to turn to?

My daughter is 19 years old, since the age of 12 she has had problems with stomach pain, this has progressed over the years and we can't get any answers.

One day she was standing brushing her teeth and blood ran down her leg, we went to A&E and they said they would send her for a colonoscopy which we had to book via the GP. We had to really push the GP to get this arranged and with luck the day they took her bloods she was having a "flare up" and it should her inflammation markers over 1,000. The colonoscopy came back clear. She's constantly pooing blood, and a lot of it, her hair is thinning and she is getting mouth ulcers as well as the pain in her stomach. The blood is now coming in clots, and when she farts blood is going down her leg. She's having to take a change of underwear with her to work these days. The GP told us that based on the colonoscopy results it looked like she had Crohn's disease but when we were sent back to the hospital we were told no she didn't and they thought it was down to diet and perhaps piles in her small bowel so she was sent for an MRI. Again this came back with no inflammatory bowel disease. She has been peeing herself at night sometimes and when she needs to pee it's urgent, what is going on?

We are really worried, no one seems interested because of her age and it's being put down to diet, this isn't diet, constantly pooing and farting blood is not diet, losing your hair and mouth ulcers is not diet, there is nothing wrong with her diet, we don't know what else to do, 7 years of this and things are worse than ever, we need to get to the bottom of this, I'm worried she has something serious, where can we go for help as the GP and hospital are of no help, as soon as a test comes back clear your off this list!

  • Hi there

    I am very sorry to hear about the ongoing unpleasant and distressing symptoms your daughter has. I can appreciate how worrying and difficult this must be for you as her parent.

    Unfortunately no one here can diagnose or say what the matter may be. Symptoms can be caused by many different things and most won't be the result of something as serious as cancer, however if symptoms persist or worsten it is important to go back let the doctor know.

    It sounds like your daughter has had various tests that have come back normal which in one way is reassuring. However I do understand how having continuous symptoms is not normal and it is understandable to want to have some more answers.

    Sometimes it can be difficult and take time for doctors to pinpoint the exact cause especially when every appropriate test has been carried out. From what you have said your daughter has had blood tests, stool tests a colonoscopy and CT scan which would be the correct ones to check out the symptoms she is having.

    As this has been going on for 7 years it is probably unlikely to be cancer, as any tumour large enough to cause symptoms would usually be big enough to see and be picked up during a colonoscopy or on a scan.

    It is however important that your daughter goes back to the GP to talk about these ongoing issues, to ask are there other tests that can be run or does she need to be referred to another specialist department for assessment. Do stress to them how this is affecting her everyday life and mention every symptom she has to them, so no stone is left unturned.

    As I say there are many different inflammatory and other rare conditions that may be responsible for this it is just getting your daughter to see the right person to run the right tests to find this out.

    I am sorry we can't be of more help but hope you and your daughter can get some answers about what might be causing this.

    Best wishes

    Naomi