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Mystery bowel problems/bowel cancer fears

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Sam1986
Sam1986

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!

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  • Rubes123
    Rubes123 Sam1986

    Posted

    Really hope someone comes along and helps you.

    A colonoscopy will should help with investigations. Like you I not had any real answers to why my bowel habits have changed over night (been going on 8 yrs now) never had a stool test. Only just had blood tested this year, like you everything came back normal just slight raised bilirubin (liver)

    Might be worth getting a intolerance test done too for your own peace of mind help you cut any foods out.

    I try and cut foods out and still have problems too.

    Very frustrating

    • Sam1986
      Sam1986 Rubes123

      Posted

      Thank you for the reply Ruby. Yes it is so frustrating! I have had a celiac/gluten intolerance test at the doctors and that came back negative. I was told they can’t do any more food intolerance tests at my doctors and I’m not sure where to get them done.
    • Rubes123
      Rubes123 Sam1986

      Posted

      Try Holland and Barrett I haven't had one yet myself its only just been suggested to me on here.

      I really understand what your going through. My social life does not exist anymore I hate being round people now, 4 years ago I had to give up work because of this. Called in sick a few times and realised I can't keep doing this as I was very unreliable.

    • Sam1986
      Sam1986 Rubes123

      Posted

      I can’t see anything about it on the Holland and Barrett site, so maybe they are not offering the food intolerance tests anymore? I’m sceptical if it has anything to do with food anyway to be honest. It is awful not knowing what is wrong isn’t it, and I feel like I have no quality of life now and can’t make plans as I never know how I’ll feel.  I used to be a musician playing in the pubs but had to give that up due to these problems.
    • Rubes123
      Rubes123 Sam1986

      Posted

      Try stores like them too. It's where I plan on going, look online for places in your area too. I asked the person who told me about it where she went.

      Same with me I don't make plans because 75% of the week I will be bad .

      What is your stool like if you don't mind me asking. I think your getting good care by doctors, you had more test than me in these 8 years lol.

    • Rubes123
      Rubes123 Sam1986

      Posted

      Do you tell the doctors this that its affected your social life and job?
    • Sam1986
      Sam1986 Rubes123

      Posted

      My stools are different every time I go... sometimes (rarely) normal looking, most the time I only pass small amounts and still feel like there is more left. Sometimes I go 2-3 times a day, sometimes 5-6. The consistency is different every time. I have told the doctors it is affecting my life but they just say there is nothing they can do. Now I have to wait 1-2 months for a “virtual” Colonoscopy while worried sick and in pain a lot of the time. The pain is particularly bad in my lower back and legs at the moment, whereas previously it was usually in my belly button region. I also have lots of trapped gas. Don’t know what to think.
    • Rubes123
      Rubes123 Sam1986

      Posted

      I think you sound same as me I don't those gurgling noises or anything like you. Although my stomach does make noises.I also get trapped gas. After my colonoscopy I was told I had solitary rectal ulcer syndrome (thats what they blamed the mucus for)

      Don't think it explains my strange BM, starts from formed to soft to watery dots of poo just about.

      I had a xray on the bowel that confirmed I am not emptying properly (obstructive defecation).

      I would keep pestering the gastroenterologist not the doctors. They be the ones who can help you more doctors just make referrals most the time in my experience.

      May also be worth getting a colon transit study done.

    • Sam1986
      Sam1986 Rubes123

      Posted

      I get The formed and non-formed stools in the same bowel movement too. The problem I have is I don’t hardly see the gastroenterologist and when things have got so bad I have ended up at A&E they don’t want to help and say “Go to your GP”. Well I have been so many times and it is a waste of time. I have problems with the fact that I am suffering yet no one will help me. I do not know what to do and am at my wits end, I have even felt close to suicidal. The gastroenterologist also refuses to refer me urgently now which means long waits for tests, and then agonising waits for test results. I can’t even contact my gastroenterologist as the secretary never answers the phone and no one ever gets back to my messages. If I end up having cancer I could be dead by the time I find out what’s going on. What should I do???

    • cheryl52225
      cheryl52225 Sam1986

      Posted

      If I was you I would do what we done we went to see gp and said to go the pain boyfriend was in that we had phoned a number of ambulances out and we felt like we wasn’t taken seriously tell the doctor your worried you have cancer ask them to refer you for a colonoscopy if he doesn’t refer you tell them your going to make a complaint about him or her have you lost any weight? I don’t think you have cancer because there would probably be blood in stool ask them to send your stool off for an occult feces blood test that’s testing for blood and calprotecin in stool usually it’s high of cancer is present in Liverpool where we live there is pals in the hospital you can complain to if you feel your not getting treated fair at hospital we was on the verge of complaint ourselves we’ve had this for months only recently got some tests done 
    • Sam1986
      Sam1986 cheryl52225

      Posted

      Thanks for the reply. I’m awaiting a virtual CT Colonoscopy at the moment. Could be any time in the next few months. I have asked for the fecal occult stool test but have been told by my GP they are unable to order it due to my age. I’ve had a fecal calprotectin test done though which came back at 42. (Normal). Not sure what I’m going to do, have been feeling sick today.
    • Rubes123
      Rubes123 Sam1986

      Posted

      I think the gastroenterlogist is waiting for the colonoscopy. That usually the first investigation.

      I am sorry to hear about the loss of your dad at such a young age, I can see why it be hard to trust the professionals to diagnose you.

      They investigated me for proctitus (founds ulcers) said this may be chrons. Sent a stool sample in (didn't get tested because it was a formed stool) then he came to conclusion this is solitary rectual ulcer syndrome. I think this is wrong. I been so unwell and in alot of pain lately and gets worse.

      I hope you find some comfort by being on here, its helped me a little as before I came on here I was really close to ending my life.

      This must be all very hard for you as it sounds like your in alot of pain. As I could imagine be hard to wait around for tests.

      Are you on any medication? What is your diet like? Do you believe they is triggers?

      I'm starting to think I can't have meat at all.

    • Rubes123
      Rubes123

      Posted

      Sam hope your ok
  • cheryl52225
    cheryl52225 Sam1986

    Posted

    Hi Sam your symptoms sound like my boyfriends he’s 50 he had h pylori years ago his stomach/bowel has never been right since he’s been to A&E numerous times over the years but since June this year he has had loud gurgling noises in stomach he’s in pain most days and feeling ill he’s been constipated a lot then sometimes has diarrhoea his stool has yellow mucous in it he feels ill every time he goes toilet since June - September we had six ambulances out as the pain was that bad they gave him morphine and anti sickness injections and sent him home from hospital in the end we demanded investigations he’s lost two stone in weight between may and June gp sent him for colonoscopy what’s normal biopsies normal ct scan normal blood tests all normal but stool sample showed up high calprotecin 475 it was gastroenterologist seems to think it’s ibs and constipation I disagree my boyfriend is now waiting a mri scan of the small bowel and a endoscopy I think he may have crohns apparently on talking to people who have crohns on fb they said they only got diagnosed with a capsule endoscopy so you might be best asking your doctors to refer you for capsule endoscopy 

    • Sam1986
      Sam1986 cheryl52225

      Posted

      Yes his symptoms sound rather like mine, except my fecal calprotectin test came back with a normal result of 42. (Anything below 50 is considered normal). I did ask for a capsule endoscopy but they would not refer me for it. I also have insisted for an h-pylori test but this came back negative. I have now got to wait goodness knows how long for a CT Colonoscopy maybe followed up with a regular Colonoscopy. How are we supposed to cope with the pain? I also get the mucus in the stools btw. My sympathies go out to your boyfriend!
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