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Crohn's and Colitis Support
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So confused

So long post I'll try cut short. Roughly a few years ago I suffered from ibs which turned bad. I've had non stop problems since. Constant running to the toilet after food and drinks I lived on boiled eggs and white rice for months as it was the only food I could handle. I've gone to a normal diet now but my symptoms are still there constant pain so sharp in my left side spreading to my right then goes into my groin area and constant back ache mainly shoulder blades and also lower back and hip pain .. in my tummy mainly after a few minutes of eating then lasts hours at a time it's like a stabbing pulling stitch burning. Hurts to eat and feels like I'm wearing a corset. I have a constant urge to go to the toilet even when I've been I don't feel like I've finished as soon as I stand up the feeling is there and it feels like poo is ready to come out all the time. I've been put on immodiums that I take regular otherwise I wouldn't make it to work. They've helped to form my poo as I was 6&7 on the stool chart 4-6 times a day and through the night. Right now I go every day but once or twice but that feeling that I need to go is still there. I had a colonoscopy as my calprotectin fecial ( sorry for misspelling) levels was 155 the colonoscopy showed inflammation. But no other problems. Recently had another stool samp!e and the cal levels were 162 so gone up. I just want a diagnosis as this has taken over my life I dread every morning wondering what pain I'll be in today hoping I make it through the day without having to run to the loo. I've been referred to a gastroenterologist waiting on a letter

9 Replies

Any faecal calprotectin level over 100 rules out IBS. many IBD sufferers are wrongly misdiagnosed for years as having IBS.

Your GP could prescribe codeine phosphate (15mgs - 60mgs up to 4 times a day) codeine will firm up your stools and is a mild opiate pain killer. Loperamide needs to be taken with caution in IBD.

Once you get letter from Gastroenterology phone up and ask to be put on cancellation list, this means you may get your appointment brought forward if your lucky. Did your GP ask for urgent referral or routine? as this can be the difference of weeks or months!

It as also worth asking your GP to run blood tests especially full bllod count and inflammatory markers.

Good Luck, and if you have any concerns or questions just ask. I can also be messaged privately on Health Unlocked xx


Thankyou so much willow 24. Dr won't give me many codeine tablets as he says they can be addictive and on top of loperamide can be a lethal mix. I tried codeine mainly to firm me up (stools) but they didn't do anything. I tried it for 8 weeks was taking two tablets 4 times a day so i swapped for loperamide which helped lots plus I don't want to take both incase I do bring myself extra added complications. Im really upset as I don't think my gp has put it as urgent as I'd like because the appointment ive just received is for September. I just need to find put what this is thwn be treated properlt. Id just like to go a day without having tjat feeling that i need to go to the toilet. Im a t.a one to one key worker so i cant just pop off to the tpilet at the drop of a hat. I'm not having a great day today. Atm the immodiums are my lifeline I wouldn't be able to function without them like leave the house go to work they've formed my stools maybe too much although I do go every day but just once although I feel like I need to go more so I do think im doing more harm taking loperamide...I'm just in a mess I suppose. But the peace of mind is that taking loperamide daily means I won't have diarrhoea everyday. Before taking them I couldn't leave the house I was going to the toilet 4-6 tines a day for 8 weeks then in the end I had no choice as I had to return to work. So I kow without them I'd be back to that situation. I'm suffering today from bad pains it's just awful makes me feel sick but I never am. Also feel winded and still have that urgency need to go to the toilet even though nothing g is there but when I'm sat on the toilet the feeling goes it's very odd. The pain is just getting too much constantly feeling dizzy also


you need to see a Gastro ASAP and get on the proper medications. Have you had blood tests done?


No blood tests done yet. It's like My gp doesn't seem to be taking it as serious as it feels. Just seems like I'm being left to suffer x


My advice would be to change your doctor pronto! I am the mother of two severe colitis sufferers, one of whom has had the whole of her large intestine removed ten years ago. Both of them have always been told not to self medicate on loperamide as it is not considered to be beneficial only in certain circumstances and then only to be prescribed by the consultant.

You need some good medical attention to diagnose your illness and be treated appropriately. Change your GP and asked to be referred.

1 like

I've applied to change drs but I'm on the waiting list. My gp is absolutely rubbish I've been like this for the last 3 years but only in the last 6 months has it got as bad as this. I was sent home from work as work thought I had appendicitis because I was doubled over in pain x


Do you kow of any meds that will form me up? Instead of loperamide/immodiums. I tried codeine for that reason (also for the pain) but didn't work..I gave it 8 weeks as gp kept saying just keep at it. But I gave in in the end as I had to return to work. Because I'm a one to one key worker it's the thought of needing the toilet at any point of the day and isn't easy to get cover while I pop off to the toilet. I tried fibregels but they didn't firm it up like the gp said it would x


Definately change GP practice, the treatment you are getting is ridiculous. I know codeine isn't working for you but it is only addictive if you take it when you dont need it. I take morphine for pain as the other pain killers put me in urine retention. Sometimes I need to take it, sometimes I can go weeks without taking it as I can manage with the pain.

Iv heard Kefir is good at firming up stools. on a quick internet search Pepto-Bismol seems to be an option, but speak with a pharmacist first. Pharmacists will know and understand medications better than your GP, so it may be worth speaking to 1 about stool firming meds.

good luck x


Thankyou willow. I've had more help and advice from this site than I have in all the time I've suffered x


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