Mystery bowel problems/bowel cancer fears

Posted , 3 users are following.

Hi. Bear with me here as this is a long story! I’m a 31 year old male who has been going through hell for the past four months or so. At the end of August I woke up one day with a horrible upset stomach; at first I didn’t think much of it but it continued, and then I was getting other symptoms like constant erratic bowel movements, constant loud gurgling stomach/bowel noises and terrible crippling abdominal pain. Over the next 2-3 weeks or so, the problems were persisting and the pain unbearable just under my belly button so I must have visited around 10 different doctors at my surgery, all of whom I didn’t think were really taking my problems too seriously and they all said “It is possibly IBS” without doing any testing whatsoever. I then ended up at A&E with the pain as it got so bad and they just sent me home without doing anything! I then finally got some blood work done at the doctors and everything seemed normal - no anemia, no inflammation shown in CRP test, liver and kidneys working well, and no obvious explanation for my symptoms. I then had an ultrasound of the abdomen which came back clear and a stool test and urine test which showed no infections. Eventually at my insistence, I was referred to a gastroenterologist who I saw at the end of September who sent me for more extensive blood tests and I was told to hand in a stool sample to test for fecal calprotectin, and go for an abdominal and pelvic CT scan. Anyway after a fair wait, I found out all these came back clear. Nothing abnormal was seen and seeing as my fecal calprotectin was normal I was told it was extremely unlikely I had inflammatory bowel disease. Yet all the time my symptoms were changing/worsening  and I developed terrible back pain that moves into my legs and sides while the abdominal pain has lessened slightly. I have been extremely frightened that what I am dealing with is bowel cancer although 20 doctors now or more have told me IBS, but I don’t feel there has been enough tests and I don’t feel reassured. I have lost a fair bit of weight and have tried the low fodmap diet to no avail. It doesn’t matter if I eat or don’t eat, or what I eat, the pain is unbearable and I am in constant suffering with whatever this is. I also have a feeling like I need to go for a number 2 constantly. I have become isolated and my family life is suffering greatly. I have now been sent for a virtual Colonoscopy (CT Colonography) after practically begging for some more investigation but it looks like I will be waiting a fair while for an appointment. The constant pain and discomfort is making my life unbearable and I don’t know what to do.  Everything has come back clear including a CEA cancer test so what should should I think and how do I deal with this constant pain? I know a few people with IBS and they have flare ups and it goes, with this it is constant! Having been told I don’t have inflammatory bowel disease my mind keeps telling me I must have cancer, and I can’t get that thought out of my head. Has anyone got any advice or been through something similar? Many thanks for reading!

0 likes, 40 replies

Report / Delete

40 Replies

Prev Next
  • Posted

    My stomach makes random popping, gurgling, “water in a pipe” sounds a lot and it is so anxiety provoking! I have been told that only antidepressants could stop the pain but don’t want to go down that route due to the heart affects and I already have a serious heart condition. What a terrible Christmas this will be :-(
    Report / Delete Reply
    • Posted

      Hi Sam one one of the occasions my boyfriend went there A&E the discovered he has aterial fibleration of the heart had to wait for a 24 hour heart monitor they say they picked up an extra heartbeat and have told him to take beta blockers. We’ve had nothing but worry since June my boyfriends gp referred him for a ct scan that showed up something on his liver they wasn’t sure what it was so he needed a mri scan of liver turned out it’s nothing to worry about so liver specialists say why they didn’t do a mri scan of his bowel then I don’t know so got to wait for further scans and endoscopy as an out patient A&E have sent him home from hospital every time we have asked for them to admit him to hospital but they kept saying it’s not life threatening 

      Report / Delete Reply
    • Posted

      Yes I have had the same problem with A&E! It is an awful situation waiting around for outpatient appointments in extreme discomfort and distress with no solutions. I suffer with heart failure since the age of 28 (I’m 31 now) and also take beta blockers.

      Report / Delete Reply
  • Posted

    Also A&E never help. The last time I ended up there I got given paracetamol and told I was wasting everybody’s time... well hold on the pain is unbearable! What am I supposed to do when I Am in constant discomfort and waiting around for gastroenterologist who are reluctant to do anything. I also end up at my doctors every week but this is a waste of time as apparently “there is no more they can do”. 

    Report / Delete Reply
    • Posted

      We feel like we are being fobbed off by gastroenterologists we are goo to two different hospitals to get two different opinions maybe you should do the same we asked gp for a colonoscopy years ago he said it wasn’t needed but this time he referred us for a urgent colonoscopy because of the high calprotecin and his age gp said he did think there was a possibility of cancer because of the weight loss but now he hasn’t lost any more weight dr has said we have to wait for the tests I thought I would have to ring for an ambulance last night as boyfriend was in a lot of pain and was feeling so ill luckily I didn’t have to ring for one it’s awful when your life is on hold because of these horrible symptoms 
      Report / Delete Reply
    • Posted

      I’m sorry to hear what your boyfriend and yourself are going through. I can completely relate. There is no quality of life for me right now, the symptoms will not relent and there is no one who will help me at the moment. Worst still is I am able to live a normal life and it is effecting my family life and relationship. I wish I could afford to go private but I cannot. I will have to wait until at least the end of January for my next gastro appointment and I do not know what I am supposed to do in the meantime. I have lost some weight too but no one seems to take that into consideration.
      Report / Delete Reply
    • Posted

      I basically repeated most of it in subsequent messages. I believe it’s because I indicated I have been in such a state that I have had fleeting “ending it” thoughts.
      Report / Delete Reply
    • Posted

      Oh sam I really can relate because I feel the same. This time 4 weeks ago they wasn't a day in my life I didn't cry or felt like ending it. I probably feel like again in a few weeks because I hold onto hope then get nocked down again by the surgeon.

      Do you hide your feelings from your family?

      Report / Delete Reply
    • Posted

      I’m sorry to hear you have had these dark feelings too. My family know about my depression, and while they are supportive they obviously cannot do anything about my problems. It is a shame as my life is completely on pause, I just can’t be happy while all this stuff is going on :-(
      Report / Delete Reply
    • Posted

      I am always getting told “You can’t have anything serious because of your age” (I’m 31), yet I had heart failure (an “older persons” disease) at just 28!
      Report / Delete Reply
    • Posted

      I also worry as my father died at the age of 40 from being misdiagnosed (they thought he had a chest infection but turned out it was a deadly blood clot that travelled to his lungs and killed him suddenly). I feel like a similar fate is in store for me :-(
      Report / Delete Reply
  • Posted

    Sam is there ever any blood in your stools my boyfriends doctor sent his stool sample off for something called a fecal occult blood test that’s when they found out the high calprotecin when we went to see the gastroenterologist she said high calprotecin can be cause by some medications that’s funny boyfriend wasn’t on any Medication at the time so what’s the other explanation I know he has inflammation somewhere the drs need to find out where it’s so frustrating I hope you are well and get answers soon 
    Report / Delete Reply
    • Posted

      I have had very occasional bright red blood in the stool but along with soreness in an area of my bottom, I suffer with recurring anal fissures so I believe it to be related to that.  I had a fecal calprotectin test and that came back normal at a level of 42. Still I am terrified about bowel cancer. I have a serious heart condition too which doesn’t help.
      Report / Delete Reply
    • Posted

      Also fecal calprotectin indicates inflammation in the bowel at high levels which can be related to Chrones disease, ulcerative colitis, bowel cancer and other inflammatory conditions. It is a test specifically for inflammation in the bowel and not other areas of the body so something like IBS can be excluded with a high fecal calprotectin level. It is a question of finding out what is causing it. In my case I have a normal calprotectin level but that is not much consolation when I have the symptoms of quite serious conditions.
      Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up