Worried About IBS Misdiagnosis

Hello everyone,

I just recently joined the forum after reading through some past threads related to my issues and decided that I needed some advice before my anxiety shoots through the roof again.

I've been having symptoms for just over three months now. It started with terrible diarrhoea of a green/yellow shade and painful cramps with it, which I ruled down to food poisoning myself, but after two weeks of the same thing, I could not take it anymore and insisted that my parents call the doctors. We spoke to the doctors and I had a stool sample done, which came back clear. My symptoms were still consistent at this point; still diarrhoea, with the occasional stool that wasn't fully solid, but much more solid than diarrhoea. So they sent me for a blood test, and all they found on that was an unrelated folic acid deficiency.

I took the folic acid tablets for some time, hoping that maybe the deficiency was the thing interfering with my digestive tract. However I am almost finished with the tablets and I am still having symptoms. I'll admit, the diarrhoea has eased a little and has gone to a more brownish colour, but I still have stools of green/yellow colour and a few occasional stomach cramps. There have been two times where I have spotted a small amount of bright red blood in my stool, but the doctors did not seem to be concerned about that. I insisted my parents contact the doctors once more a few days ago so I could get a diagnosis, and the doctor finally said that they believe it is IBS since my mother has it too.

I felt relieved at first and started on a food diary straight away, but I don't seem to be reacting to any certain food. I even tried keeping a food diary when my symptoms started, yet again, it didn't narrow it down to any certain food. I wasn't going to join this forum as I didn't feel my issue was as bad as others' issues until this morning, after three days of having no stool, a large chunk of my stool was slightly red in colour. I have not recently eaten anything with tomatoes or beets in it, so this made me so anxious that I felt sick. Now I'm not so sure that it's IBS.

I think it's also worth mentioning that I had similar symptoms around the same time last year, only it was easier back then. I had diarrhoea a lot but it was usually a brown shade, and it lasted for about two months before slowly easing out. I don't know if it's related, but it seems a little similar. 
I am only 16 and I have never been more terrified about something in my life than this. The doctors have only done a stool sample and blood test on me, no colonoscopy or sigmoidoscopy or anything, and I've read enough cases to know that you should not take an IBS diagnosis until further investigation has been done. Yet my parents, who I have to ask to call the doctors for me, act like nothing is wrong with me. I know they care, but sometimes it feels as if they don't. I bring up a symptom to them and they dismiss it when people with the same symptom online are worried too. I try to speak to them and they mock me, jest that I'm blowing it out of proportion, yet I am terrified this really could be something more. On top of the diarrhoea I've also got a part of my lower back that hurts every now and then, which started a few weeks ago and which only adds to my anxiety. My parents dismiss me completely and can't even be bothered to help with diet changes that could help if it is IBS. 

I'm just so sick and tired of it. I cry my eyes out almost every day and pray to god it isn't what I fear, but the longer I let this go, the harder it becomes. As I said, I am only 16 and have great passions and plans for life, and if I'm living with an undiagnosed killer inside of me which has been left too late, I fear my life may be cut short. I'm to have another blood test soon to see if the folic acid tablets have helped with my deficiency, and I am planning to ask the doctor for a colonoscopy once I get my results too. But I just want to know, is there anyone else here reading this that has had similar symptoms? And if so, what steps are you taking/have you taken? Have you got a diagnosis? If so, what is it? Have you had a colonoscopy, sigmoidoscopy or endoscopy? And how do you deal with the anxiety? Because it is literally all I can think about anymore. :(

Thank you so, so much for reading if you have. Sorry that I went on a bit of a tangent, I just have not managed to properly vent this to anyone until now. My best friend and my sister urge me to ask for a colonoscopy, yet I fear I'm going to be refused. But my symptoms make me think that I've not got long left to think. Please share your thoughts, thank you. X

- Ellie 

  • Hi Ellie,

    Welcome to Cancer Chat. I'm sorry to read about the issues you've been experiencing recently, and the fact that you feel like you're not being listened to. It's good that you have seen the doctor about this - try to trust what they have said and thought about it so far. As you have another appointment coming up soon, then you have a further opportunity to discuss your concerns, ask questions, and ask for a referral if it is something that is on your mind - and you can see what they say. Make the most of this time to talk everything through with your doctor.

    Try not to connect multiple symptoms into one thing, as they are likely unrelated. In terms of managing how you're feeling, write a note of your concerns and your questions and take this with you when you see the doctor again. Aside from that, while waiting for the appointment it may simply be best to try to keep your mind off things by keeping busy and distracted. As everyone is so different, hearing other people's experiences may not be as helpful as it may seem.

    Wishing you all the best and I hope you're able to find out more soon,

    Ben
    Cancer Chat Moderator

  • Hi Ben,

     

     Thank you so much for the response, it means so much to me that I'm actually listened here as it does not feel like that with my parents. I've been keeping track of my symptoms and plan to bring up my concerns to my doctor; I was thinking about asking for a colonoscopy, though now I fear COVID makes that harder, especially for someone like me who has not been told I need one.

     

    I've been trying to keep myself distracted as you've said, and it's worked temporarily, but I always end up returning to the state of worry I always do, and sometimes I even return to Dr Google which I instantly regret afterwards. I just want to speak to the doctor ASAP, but because of my age my mother controls when I speak to the doctor, and everytime I ask her it's always "why not tomorrow" or "stop blowing this out of proportion". I know I'm worrying a lot, but I don't think she realises that the only way to relieve that worry is by letting me speak to the doctor. 
     

    She told me I can speak to the doctor on Wednesday to book in my blood test and discuss other symptoms, but let's see if she actually keeps that promise. Thank You so much for your support, it means the world. 
     

    ~Ellie