What to do next? Negative colonoscopy

Hi, im looking for some advice as I'm in a situation where in unsure how I should go forward. It all started about 4-5 months ago when I noticed pain in my left abdominal area when I move or breath in,  and I also had very soft stool full of mucus (emptying my bowels 4-5 times daily)and it wouldn't  go away and I also had extreme acid reflux. so I took a visit to my local gp to check it out... During the exam he found a type of lump that he said may be my colon but was worried and asked me to do a urine sample which came back positive for small blood, he immediately said I need to go to hospital and I stayed as an inpatient for 2 days. As an inpatient they did various tests which included a CT scan with dye  , cystoscopy and a urine test again. The CT scan showed thickening on both sides of my colon and on the location where I experience the pain, the cystoscopy came back clear but the urine test again had small blood. I was then discharged and was put on a colonoscopy waiting list and after about 3 weeks I had the colonoscopy, by which time the bowl problems had calmed down and my stool was normal again. 8 biopsiy were taken but they were from random locations as no obvious signs of cancer were present, the doctor said that there is definitely no cancer there, only mild redness and mucus was found. The biopsies came back clear. Since then I have been monitored by my gp and  had some stool culture tests which came back clear, the blood in the urine which went away for a short while (I keep getting positive and negative resaults). Around 2 weeks ago the blood came back, the pain on my left side started acting up again more than ever, in now needing to empty my bowels around 7 times daily and my acid reflux is though the roof. The doctors don't seem to have any plans to send me for anymore tests and the colon doctor has said that they feel no more followup is needed. They plan to monitor the urine for the next few years.

My problem is that the blood is still in my urine, my stool is like water again full of mucus and I'm emptying my bowels 7 times daily and my colon is still thickened on both the left and right side. All of this is unexplained and the doctor won't give me any medication for the loose stool as I don't yet have a diagnosis. My stomach aches so much recently also even though I am on lanzparazole to control the acid.

Initially they thought I might have irratble bowel desease but since the colonoscopy came back clear I'm at a total loss.

I have a bacteria blood test comming up to try help with my acid reflux problem but that's all. 

Should I just try to ignore this or how should I move forward? Since I have already had so many tests that have came back clear i really don't know how to proceed or what to ask the doctor.

Btw I'm a 28 year old male. Any advice would be much appreciated thanks.

  • Hi there - sorry you're worried & I'm sure people will come along to give you more advice than I can. But, I'm pretty sure that there aren't any tests for IBS. It's also worth saying that if you do have IBS doctors know there is a link (called the brain bowel axis) which makes IBS symptoms worse. So, because you are clearly anxious about your symptoms this may be the cause. Hope it gets sorted soon but try not to worry given what the doctors have said.

  • Purrfect is absolutely right.

    IBS is a diagnosis of exclusion so the fact you are having these symptoms, but your but your bowel is healthy makes it quite likely that it’s just IBS. there’s information about IBS here.

  • Hey, so after multiple tests in the early 00's when I was in my early 20's which all came back negative I was diagnosed with IBS... however yesterday I had to repeat a colonoscopy and endoscopy (together under GA) and apparently its all come back negative and they could not find any IBS so I'm assuming they can see it on a camera. Maybe pursue it with your gp if your still worried/getting symptoms

  • Hi James872,

    I just wondered how you are getting on? 

  • James, keep going back to your Doctor. I had every test going because of stomach pain, no blood like you have, everything came back clear. Colonoscopy, Ct scan, blood tests for everything, told probably I BS. June this year ended up in A&E and emergency op, unfortunately I now have a Stoma and a terminal cancer. Hopefully your symptoms are nothing like mine and you get an answer, but do keep going to your Doctor if not phone 111 to try and move forward. Good luck. 

  • I'm so sorry to hear cross patch. Your story really worried me - i've been having pain in my peri umbilical region for months now and colonoscopy endoscopy and MRI have all come back normal so it's unexplained. I just keep worrying about the pain but take reassurance in the normal test results. How was your cancer missed? It seems so crazy all would come back normal and you'd be told just a few months later you have cancer. I'm really sorry you had to go through that and just trying to understand if there is more I should do and if so, what? I think these are pretty much all the tests they can do...

  • Hi James, all I can suggest is keep going back to the Dctrs, mine turned out to be small bowel signet ring cancer, so a rare one and, think they were looking in large bowel region so got missed. It was only because I bloated  out and had projectile vomiting that I arrived on A&E. and then got the diagnosis. If you notice anything not right keep going back to Dctrs it's all we can do. Hopefully you'll get your answer soon. I wish you well. 

  • Thanks for taking the time to reply Crosspatch and I am so sorry they managed to miss it. I'm just not too sure what to ask for to be honest as I had an endoscopy, colonoscopy and small bowel / abdominal MRI with prep so I think I've exhausted my options. I should be happy they have come back normal I suppose but it is not answering my questions. It scares me to hear your CT scan didn't pick up on it. What symptoms were you having at the time that led to the tests being done?

    I am mostly struggling with abdominal pain around the belly button - it is very localised and i can feel the pain when pressing on it - weight loss and lack of appetite but tests are coming back normal and I'm not sure whether to give up or push for more. 

  • Hi Cgz, 

    How did you get on with the doctors? I'm in a similar situation to yourself by the sounds of it with very similar symptoms but my tests are coming back clear apart from them detecting blood in my stool

  • Hi 

    I had colonoscopy, abdominal MRI, ultrasound, endoscopy and capsule endoscopy and all normal which is good. I didn't have blood in my stools though but weight loss and nausea and fatigue

    Im now pregnant so nausea still here although at this point probably pregnancy related. I didn't regain the weight before getting pregnant but i'm hoping this was just a mix of anxiety, tiredness, maybe IBS or a bad health patch

    Im due a final CT scan after i deliver this baby to fully rule out anything but it's more because I just want to finally put it behind me. There are no existing tests left for me to do and i'm glad they have all come back negative. I still have a very precise point that hurts above my belly button but it's been looked at from every angles that we have at disposal so doctors think it's a trapped nerve of some sort 

     

    Wishing you all the best hope your tests all come back clear too. It's been going on 2 years now and it's not gotten worst or come through any test so im iust accepting its one of those things