Please help don't know what to do any more

Posted , 9 users are following.

Hi all

I really hope you can help me please I'm at my wits end I've been very ill for months now with all the following symptoms

. Distended stomach

. Lost stone and half of weight in 3 months

. Can't eat food and haven't eaten properly in about three months

. Severe pain in lower right abdomen

.bad cramps

.diarrea every time I eat

. Mucus

. Cracking and painful elbows

. Pain during intercourse

Been back and fourth to hospital stool sample calprotectin 175 but have had colonoscopy endoscopy and MRI done all negative. Told gynaecologically I'm fine.

Drs have discharged me saying I have irritable bowel syndrome and no signs of crohns been admitted 4 times and was just in for 9 days. I'm just not sure I'm concerned I'm so unwell can hardly walk in bed most of the time haven't been able to work for months hospital didn't help me and just sent me away with paracetamol which doesn't help and buscopan.

Has anyone else had this experience please I'm just worried could I have crohns and they are missing it I don't know what else to do a lady I met in hospital suggested I try to get referred to St marks hospital which is a specialist bowel hospital but how easy that will be I don't know. I'm just struggling to get by and need to get to work but don't know what to do anymore it's bringing me down ??

Thanks for listening any tips or advice would be really appreciated xxx

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17 Replies

  • Posted

    I feel for you, might be an idea to go straight to A&E. I went a few weeks ago as my GP had no idea what to do, spent most of the day there but was admitted and seen by the gastro team who put me on Infliximab as i had been bleeding for 2 mths.

    I dont know but if St Marks have an AE dept might be an idea to go there!

    Hope you get some relief soon.

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  • Posted

    Hi, I very sorry to  hear how you are feeling. I was diagnosed with crohns 52yrs this year and suffered similar symptoms to what you are describing. I went down to 6st in weight. They thought it was my appendix and addmitted me into hostpital where I had my appendix removed. It was during this operation that found that I was also suffering from crohns. So in some way the operation was a blessing in desguise.

    ?At that time there was very little known about this complaint, I had certainly never heard of it. But over the years there has been an increase in the numbers of people being diagnosed.  Has any of your family suffered from similar symptoms.

    ?There are a lot of complaints of the stomach that offer up similar symptoms which is why it is so difficult to diagnose.  I would agree with other comments that have been made and go to an a&e department of your choice and specially a hospital that specalises in this situation.  My hospital has a gastro clinic which I attend every 12months for check ups. I would certainly find out which hospital near you that has this facility. And ask your doctor to refer you to it.  IBS seems to be a get out when they are having probrems diagnosing you,  i hope that you soon establish what is causing you this problem so that you can start the correct treatment. Keep me updated.

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  • Posted

    Hi Laureate. I'm so sorry for you feeling so unwell. Gastro depts harp on about calprotectin levels in stools - if normal they just put it down to ibs. if abnormal its NOT ibs. so yours is abnormally raised! 50-100 is borderline, above 100 is raised. They need to be looking at everything other than ibs. Have you had biopsy results from your colonoscopy - what did it say on report? You could ask them to do a capsule endoscopy if not already done on your small bowel, although an mri is quite an accurate way of looking at small bowel if done with contrast. Might also be worth asking for a sehcat scan to test for bile acid malaborption which causes many of the symptoms you describe above. Don't be fobbed off with ibs. Unfortunately I find you have to push to achieve an accurate diagnosis & not be palmed off with ibs. One other thing you are entitled to do if down the line, you are still not happy with diagnosis/tests etc is to have another consultant give you a 2nd opinion of indeed even ask to change consultants. A second opinion from another consultant/colleague means a fresh pair of eyes looking at your case, in case something missed. Take care & keep us updated on here of your progress. xxx

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  • Posted


    this is dreadful.  It really sounds like crohns.  Did you have the scan where the camera went into the small intestine.  That's where my crohns is and they sometimes only do as far as the large intestine.  How long is the wait for the special bowel test.

    Re your work.  Your health comes first.  What is the worst that can happen. Maybe one day you will look back and think loosing my job is the best thing that happend.Trust me been there and now I'm in my seventies.


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  • Posted

    Hi everyone

    Thank you all so much for your kind words and support I really appreciate it x

    I've already been through my local hospital that's who did the tests I haven't had the camera that goes into the small intestine think it's called pill capsule endoscopy my hospital don't do that had colonoscopy and MRI but showed nothing. Only think that has come back is my stool calprotectin at 178.

    I'm home now struggling trying to eat little thinks but more diarrea this morning and terrible pain it's making me miserable

    My boyfriends mum is taking me to go later to see if I can get a referral to St marks hosptal but don't think it's going to be easy as everyone just keeps saying it must be ibs ?? Thanks again Kelly

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  • Posted

    I had all that and they found nothing but as a final resort they done a capsule endoscopy and that's when they found the ulcers. Insist on having this done as it will rule things out completely as it's a film of your whole insides from mouth to butt. Good luck xx

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    • Posted

      Yes I have 3 different patches of ulcers at the end if my small bowel (they even allowed me to see the pictures). They told me I had to give it 6 months and another capsule endoscopy before they could give me anything or diagnose me in case the ulcers cleared up. After the second capsule endoscopy the ulcers were no better and that's when they diagnosed me with crohns and put me on steroids and aza. Didn't get on with aza so now on mercaptopurine. Most of the pain is now gone but I still have bad days but they art as bad as they were a year ago

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    • Posted

      Hi Bella. Thankyou so much for replying - very helpful. At least once they diagnose you accurately you can then move forward with treatment - hopefully this will happen with Kelly eventually. The time in getting to that point is so frustrating isn't it? And you continue suffering in the meantime. Did they biopsy the ulceraterated area in your small bowel to diagnose crohns - if so how did they get to your small bowel to biopsy? Can I ask what your symptoms & pain were like leading upto to your diagnosis? Thanks again Bella. xx

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    • Posted

      It started as pain on upper right side and not able to swallow or eat much. I had constant pale diarrhoea for months before too which Dr's were never concerned about. I then started to get what I thought was kidney pain but had scan to rule kidneys out. I had endoscopy which showed a hiatus hernia but was told that would not cause pain. I had a barian meal which showed nothing and a abdo xray which showed nothing. I then started getting left lower pain and throughout this time had diahorria. They then done a ct and found nothing. Then a colonoscopy with biopsy but only in large bowel and found nothing Then a mri and they seen a grey area which is why they done the capsule endoscopy which showed ulcers. I then started getting stomach spasm and burning sensations in my tummy with the other pains and feeling tired and exhausted all the time. They can not get yo small bowel for biopsy without surgery. I also get some mucus and blood when I have diahorria but not everytime. Hope this helps

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    • Posted

      Hi Bella, thankyou for taking the time to reply. The reason for all the questions is I am a bit worried I may have crohns & not colitis. I was diagnosed with colitis in 2012. I've had a history of flares, oesophaghitis, gastritis. This current flare i have had no visible blood, more widespread abdo pain which worsens the more bm's i have in a day, 5-7 bm's a day of which at least half if not more are diarrea ranging from dark to normal to orangy. I am exhausted. my legs feel like jelly even after just hoovering. I am currently waiting for biopsy results from recent colonoscopy. i looked back through my previous colonoscopy reports & a couple of them(not all of them) mention"increased granular mucosal appearance" & "patchy inflammation". I'm sure I've read somewhere these 2 phrases are more in keeping with crohns than colitis. I have also asked my consultant for a contrast mri to look at my small bowel entirely, as they have only ever looked at the beginning & end of it by endoscopy/colonoscopy respectively- waiting to heare if he will do this. Thanks again Bella. Its very helpful to get an insight/info from someone like you that's had a similar experience. xx

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