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[sloulou]

Hi, both me and my mum have IBS, but over the past 7 months mine has been so bad i cant eat, i have lost a stone in a month, and i am frequently going to hospital in agony. could this still be IBS?

Ive had a colonoscopy and flexi sigmoidoscopy just showing inflammation, biopsies, all fine. Ive had several chest and abdo x-rays, i often have faecal loading so Im on lots of laxatives, but they don't work, i go to the toilet every 2 weeks are so even on the laxatives. Ive had blood tests for Celiac and a calcium blood test, and thyroid tests. I had tests for blood copper levels which were low, ceruliplasm levels which were low but urine copper was normal so they don't think it's Wilsons.

[Patcy2468]

Hi sloulou patricia here that ibs is a horrible condition I lived with it for ten yrs spasms nausea & living on the toilet I & number of trips in agony to the hospital but they always sed it was ibs & anxiety & was sent home with no more than paracetamol & no tests done untill I went down hill & lost so much weight & needed a urgent blood transfusion they told me it was coeliac disease it has all the symptoms of ibs but you get so ill with not getting the nutrients and eaten gluten& lose so much weight & suffer really bad so dont leave it babe get some test done so you can rule this horrible coeliac disease that is so complicated ask your doctor about it & then once you no its not that then you can get sum spasmodic drugs that help you ibs wen your food goes down with the spasms take care & be safe patricia

[sloulou in reply to Patcy2468]

Hi, I've had the test done for celiac and I don't have it, I'm on buscapam the anti spasmodic, and tramadol but I'm stuck in bed most days in too much pain to move

[Patcy2468 in reply to sloulou]

I no what you mean babe them pains can be really bad when the food goes down & needing the toilet but you just take each day as it cums take care patricia

[sloulou]

Thank you, I'm hoping that changing gps is going to help as I have other symptoms like a temor and unexplained bruises that he's not looking into so I'm wondering if everything's connected

[MiniMum97]

Keep pushing for further investigation. Take in a written list of symptoms and a diary of what's happened, what you've eaten and your weight loss.

Have you had a colonoscopy? Have they looked for ulcerative colitis?

[sloulou]

Yeah had colonoscopy a few months back, was badly prepped as I kept throwing up the bowel prep so it didn't work too well but biopsies were fine and there's some inflammation. my doctor had a go at me last week because 'there shouldn't be so much wrong with you at your age' (I'm 20). so there's no point me taking him a list of symptoms, he won't pay attention so I'mhaving to put everything on hold till I'm registered at the new one in a few weeks. I am due an ultrasound soon because my urine is maroon but clear for blood and I keep getting uti's so Im wondering if I may have a fistula

[mdj2016]

You don't mention what tests you have had done at the hospital. Any excessive weight loss should be checked out so please go back to your GP. Write down what is happening and when because along with the IBS you can have an intolerance to something else you have eaten Ask for the test for Coeliac disease if you haven't already had it done. Don't wait for the next flare up because you won't be able to communicate and give the detail that is needed; also eat little and often rather than sitting down to a meal. Good luck with this I know it is a miserable condition to live with.

[sloulou in reply to mdj2016]

Hi,

Ive had a colonoscopy and flexi sigmoidoscopy just showing inflammation, biopsies, all fine. Ive had several chest and abdo x-rays, i often have faecal loading so Im on lots of laxatives, but they don't work, i go to the toilet every 2 weeks are so even on the laxatives. Ive had blood tests for Celiac and a calcium blood test, and thyroid tests. I had tests for blood copper levels which were low, ceruliplasm levels which were low but urine copper was normal so they don't think it's Wilsons.

[Kerry1971]

Have you had a shape marker study done? It tests your transit time. I was in hospital constantly for 2 years with volvolus and bowel obstruction. I had every scan and test going and have been diagnosed with slow transit constipation (the nerves and muscles in my bowel don't work) I also have an under active thyroid which also slows down everything in the body. The obstruction pain was like being in labour and I couldn't pass anything. I finally had major surgery last year to have 1/3 of my large bowel removed as it was very long, loopy and floppy. I am much better now but still take laxido and am gluten and dairy free. What laxitives have you tried? I was on linzess, magnesium hydroxide and laxido before surgery and still getting obstruction. Best of luck to find the right treatment.

[sloulou in reply to Kerry1971]

No i havent had a shape marker study done but it sounds like i should, Ive tried prucalopride, im currently on linaclotide, laxido, senna and i have picolax for if it gets too bad because i frequently get faecal loading that makes my bowel so distended the xrays show it goes up behind my ribs, compressing my lungs making breathing hard.

[Kerry1971 in reply to sloulou]

Linaclotide is the same drug as linzess. I was on 250mg. I think you need to push for more tests.

[sloulou in reply to Kerry1971]

I'm on 290, just had to take bowel prep because I haven't been bathroom in 3 weeks, spent all night throwing up with blood in it (my docs know that happens so I don't have to go anywhere unless it's toms), shivering and crying, and running to the loo

[Kerry1971 in reply to sloulou]

I feel so bad for you that you are not getting more medical help. What do they do if you go to A&E? I was always admitted and kept in for about a week. I was in over 20 times in the space of 2 years before my surgery. I really feel like you need more help as you can't carry on like you are. Bringing up blood is surly not a good sign. I really hope someone helps you to feel better soon. X

[sloulou in reply to Kerry1971]

A&e runs bloods and urine, ignoring the color of urine which is brown, does an xray, usually finds faecal loading and sends me home for my gp to manage me, despite thenumber of meds

[Deronda77]

Hi sloulou that sounds really awful. How are you today? Have you vomited blood before? Some of those symptoms are definitely unusual although sometime ibs can be unusual. I ve passed blood before on a sudden shift from ibs c for years to ibs d on becoming lactose intolerant and I have had colonoscopy and gastroscopy and been told all clear and ibs so weird things can happen and ibs pain can be terrible but what was gps or consultants response to inflammation found in scope? Are they treating it? All the best and hope you get some answers and relief soon x

[sloulou in reply to Deronda77]

Yeah when it gets bad like it was this weekend i bring up blood, it only happens occasionaly and the doc knows but isn't worried. Not treating inflammation found in scope just leaving it, dunno if its cos their trying to get my bowel regulated