Worried I've Been Misdiagnosed With IBS

I just thought I would post here for a little peace of mind, or at least to hear some advice/personal experiences.

I am a 22 year old woman and roughly 6 months ago I began to experience severe abdominal cramps accompanied by changes in my bowel habits. What’s more worrisome is that shortly after my abdominal cramps began, I first noticed blood on my tissue paper after a bowel movement.

I saw a doctor who carried out a rectal exam and told me that there was a small haemorrhoid (but also told me that nearly everyone has small ones) and that the change in my bowel habits (going more frequently with looser stools) may have aggravated it and caused it to bleed. She told me I likely had IBS and prescribed me suppositories and advised me to see her again if my symptoms didn’t improve.

After 2 weeks of using the suppositories, the bleeding did not stop. I was unfortunately unable to see the same doctor, and the second doctor simply prescribed me more suppositories and brushed me off. I decided not to use the second supply of suppositories, and after another week or so the bleeding stopped entirely on its own. I also began to follow a FODMAP diet around this time and my abdominal cramps disappeared as well.

I had no more issues with bleeding for the rest of the month, so I figured it really was just a combination of IBS and haemorrhoids and went on with my life.

However, a few days ago I noticed blood again while wiping.  An hour after discovering the blood, my abdominal cramps returned and are still present 5 days later, despite still following my FODMAP diet and eating meals that hadn’t given me any bother over the last six months. I have not experienced more blood since.

I’ve booked to see a doctor this coming Tuesday and I am going to ask for a referral to a gastroenterologist for further investigations. I’m just concerned it’s potentially bowel cancer, and that it’s been left to spread for over 6 months now.

Has anyone with IBS eaten meals for months without upsetting their stomach, and then all of a sudden those same meals caused abdominal pain months later? I just don’t understand why my IBS would kick back up all of a sudden when I haven’t made any changes to my diet, and it’s been stable for months.

Many thanks for any responses!

  • Hi beth_n. Welcome to the forum.

    At age 22 you really are very young for bowel cancer, but the rule is that if you're worred, see your GP.

    As for the dubious joys of IBS, well I've suffered for the best part of 40 years.  Certainly I have flare ups for no obvious reason, even when eating foods I've had many times before. In my experience, the FODMAP diet is fantastic for some people, useful for others, and useless for many.  I fall into the useful category, where I've identified some food groups that might cause me symptoms and which I can exclude, but despite all this, I still get flare ups. FODMAP is not a magic bullet or a cure all, despite the hype. 

    I don't know what medication you're one, but I have found Alverine tablets useful, but you have to take them every day before meals, plus Buscopan which you can buy over the counter. Aloe Vera juice can be useful for settling down a flare up, too.  You might find taking two or three Fybogel sachets a day helpful, too.

     

  • Hi beth_n,

    I completely understand your worry as I started with similar symptoms a little younger than you. That was put down to IBS and a small tear in the skin. Long story short, I'm now 58 and still have those symptoms on and off, sometimes for no apparent reason. (Colpermin peppermint capsules work well for me.)

    You're very sensible to seek medical advice. Be upfront about your concerns. But please remember IBS is a pretty common, niggly, painful beastie. Hope your next appointment goes well.

  • Thank you for your response telemando! You’ve made me feel a lot better. I’m not currently on any medication for my IBS, I tried Mebeverine when I was first diagnosed but it didn’t help. I’ll definitely mention those to my GP when I see her. Thank you very much for your help!

  • Thank you for your reply gamechanger, that’s comforting to hear! I was worried that what I’m experiencing was peculiar, so it’s good to hear that others have had similar experiences :)

  • I've found both Mebeverine and Alverine have to be taken strictly 30-60 mins before meals and are more useful in stopping flare ups from starting rather than damping down flare ups once they start.  Also, once a flare up does start, you might find occasional use of over the counter Imodium  can control the diarrhoea. (That is not an easy word to spell at 8:30 on a sunday morning!).

    I know I sound like a walking dispensary, but after 40 years of this wretched condition, I've learned what best keeps it under control (but I still get flare ups!) 

  • Just thought I would update this to say that I’ve seen a consultant about my issues that are still ongoing and have been getting progressively worse. He said there are no haemorrhoids or tears in the skin, so he referred me on for a flexible sigmoidoscopy. He also told me I don’t have irritable bowel disease based on my blood tests and stool sample, so Crohn’s isn’t the cause for my bleeding or pain.

    I am still experiencing rectal bleeding and severe abdominal pain, and two weeks ago I had an episode of bloody diarrhoea. The consultant didn’t seem to think it was anything to be concerned about, but if it’s not Crohn’s disease, what else could be causing my symptoms? The blood is obviously coming from somewhere internally since I have no haemorrhoids or tears, and it’s closely connected to my abdominal pain.

    Has anyone else had similar symptoms (severe abdominal pain with rectal bleeding, and occassional episodes of bloody diarrhoea), and if so what did they turn out to be? All doctors have told me I’m too young for it to be anything serious, but they haven’t been able to give me an answer when I've asked what it could be instead. (Also, any recommendations for pain relief would be much appreciated - I've tried both ibuprofen and paracetamol which have not helped, and sometimes I'm in so much pain it's hard to even function). 

    Many thanks again for any responses!

  • Hi Beth_n,

    All I would say is don't give up! Keep pestering the doctors, if they say it's not IBS or Crohn's then ask for more tests.

    I was diagnosed with IBS over 7 years ago and my condition has been slowly getting worse; dizzy spells, gastroenteritis symptoms 4 times since September and A lot of pain, so much so I was admitted into a and e this week (sent home the same day).

    The doctor I saw however was very helpful and angry at my doctor for diagnosing me with IBS before ruling everything else out as she said that IBS should be close to the last diagnosis not the 1st. She has now refered me to a gastroenterologist.

    I've also been on the Fodmap diet for 2 months to try and figure out if there was a food group that doesn't agree with me but haven't been able to as I've been sent home from work twice in the last 3 weeks because of how bad the flare ups have got.

    I'm not giving up hope that there are answers and if it is a sever case of IBS at least they've ruled everything out. I'd say don't let the doctors fob you off, be a pest and make them rule everything out to put your mind at rest.

    Sam.

  • Hi IBS0rn0t. Welcome to the forum.  What have you tried to calm down IBS flare ups?  I have found the following useful: Aloe Vera juice, Immodium, Colpermin, and soluble co-cocadamol for the pain (but only to be taken for a day or two at a time). 

    I recommend you persevere with the FODMAP diet.  If you read my earlier postings, you'll see I said that I found it useful, but not fantastic; however, since then I've reviewed my opinion, and I put it closer to fantastic.  By continuing to avoid my trigger foods, I have avoided all but two flare ups, both of which coincided with restaurant visits where I might have eaten something made with mushrooms (one of my triggers).  

  • Thank you for your reply telemando.

    I'm currently taking mebeverinen, lansoprazole and Buscopan. I get a lot of acid reflux so sometimes find I need a lansoprazole at the start and end of the day. I've found that if I take Imodium it has a knock on effect and become very bloated, constipated and sore so try to avoid it.

    I've not tried aloe Vera juice though so will give that a try.

    Hoping to start re-introducing foods in a couple of weeks to see if I can narrow down a trigger food as I've lost a fair bit of weight since last September. 

     

  • You are correct to be worried and you must insist on a full investigation.for some years I had been suffering with IBS  . Was given various pills and potions including hypnotherapy. Many visits to a consultant , Finally my GP referred me for a colonoscopy, the consultant refused this and again diagnosed IBS. 

    Last year I was given a colonoscopy, was found to have T4 bowel cancer. Major operation to remove a large part of my bowel followed by 6 months of chemo. Some cancer cells entered my bloodstream and at high risk of spreading to lungs and liver. 

    Do not accept a diagnosis of IBS without a thorough check for bowel cancer.