I am new to this forum. As a child/teenager I was diagnosed with a "spastic colon" and had intermittent constipation and diarrhoea with awful intestinal spasms, causing fainting. After Glandular Fever in the 90s I seemed to have almost constant diarrhoea. In 2002 I was diagnosed with UC and diarrhoea had become a major issue (up to 16 visits in 24hours). After 6weeks I was prescribed Asacol, following a colonoscopy. It helped. Since then I have had just minor flare ups and they have mostly been short lived. Last year my gastroenterologist said I could have IBS and basically said "cheerio" ..... so what I want to know is ....... are the treatments different and could I have both problems??! So confused!
My GP has given me Asacol and steroids as I have been back on toilet patrol for 9days and am beyond desperate. Blood tests and a referral to hospital done today. Both/either/neither.....it sucks. Has anyone used FODMAPS?
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Suerumbletum
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So sorry to read of your flares of U.C. It's a horrible condition as I know too well but have it milder than you thankfully!. Asacol has helped me too.
Your Gastro was wrong to discharge you from care as IBD needs regular follow up!. I also know that you can have a bout of IBS after a flare of U.C which maybe what should have been explained to you better by the Gastro!. It can last weeks too!.
I'm glad your being referred back to secondary care and hope you are seen quickly and are better soon. X
Thank you for your support. I had my UC diagnosis in 2002. Gradual improvement until 2015. I came off Asacol and was fine for 2 years. I had a totally normal colonoscopy and the consultant's comment was - "It could just be IBS". No onward referral to a dietitian was offered. I thought I would be fine but this flare up is worse than 2002. My GP gave me Asacol, which has taken 5 days to work, and yesterday he gave me some steroids and said he would refer me to St Marks which the main digestive/bowel hospital in this area. Looking on the bright side my innards are actually quiet today......that "water through pipes" feeling that sends me rushing to the bathroom has gone!! It is such an exhausting and distressing condition.
Was your U.C diagnosed by biopsy as you had a clear colonoscopy?. It must be IBD as Asacol has worked. Glad the treatment has helped and your improving, it's such a draining condition!. Good luck for your consultant appt, glad it's with a top specialist! . Hope it's soon!. In case you haven't seen it, the colitis and Crohns website has a lot of helpful info, worth a look.let us know how you get on. X
Yes. My first colonoscopy in 2002 showed UC and they have taken biopsies every time. Asacol has worked but it took 5 days - I was taking it as a preventive for a long time but I stopped when my last colonoscopy was clear. That might have been a mistake.
Thanks for your good wishes.
Sue x
Hi there Sue, I don't have UC but I have read on here that many people have other conditions as well as IBS. It annoys me greatly when some of the medical profession just 'pass you off', they might think differently if they also suffered as it's an awful condition. I really feel for you as having to constantly go to the toilet wears you out as well as makes you feel ill all the time.
I really hope that your treatment is continued once you have your results.
Thanks. The meds for UC are working at last so bathroom occupancy has reduced!! My whole tummy feels awful and I am wearing my leggings around my hips. Having that pregnant look is the least of my worries at the moment!! I am past the age where I actually could be pregnant!! There are people who say they would rather die than be incontinent!! I was distressed by it but hey....there is so much more knowledge available now. Too soon to give up hope!!
So glad the meds are working, there is nothing worse than being like that. I am also past the age for pregnancy and I can't wear anything too tight around my waist, everything has to be loose. There is certainly a lot more knowledge and it's getting better.
Thanks for your support - a little bit of sympathy from a 'fellow sufferer' goes a long way! We actually took down our garage and built a third bedroom on our bungalow- with ensuite - as my husband often hogs the bathroom - leaving me banging on the door!!! That has helped a lot!!
I must be feeling better because I can laugh about it today! I used to teach in Papua New Guinea and diarrhoea was endemic. They called it pek-pek wara which translates into poo water and no matter how careful I was in washing fruit and vegetables from the market I was afflicted fairly regularly.
I am hoping to be seen quickly and praying for a recharge of my batteries.
Yes this is a horrible condition and it seems to affect a lot of people so quite why it is dismissed so easily by medics I am not sure. Thanks again. Sue
You are most welcome and understanding does go a very long way as we are all in the same boat on here albeit differing in symptoms. It must have been so hard living in a country where you regularly had upset tummies, I can't begin to think what that was like!
Keep smiling as I know eventually the medics will have a lot more understanding - we need medics out there that have this condition as those are the people that will understand.
Take care
Alicia x
Fodmaps changed my life. Do give it a try. If you get the Monash University app (they are the ones who developed it and continue to test foods and update the app) it is really easy to follow as all foods tested are traffic lighted green. Amber and red. You could try going gluten free and/or dairy free for a couple of weeks before starting to either rule those out or. Clarify they may be a problem.
As IBS often causes a lot of anxiety and stress due to toilet hunting etc you could also try self hypnotism, mindfulness etc.
Thanks for your advice. I have just cleared my fridge of dairy and fruit that has a red light! I got the app a couple of days ago but I have felt rubbish so have had rice cakes, scrambled eggs and bananas (not together!) and thankfully the meds for UC are starting to work their magic. I bought a gluten-free loaf but that did not get a happy reception in my tummy. So basic it is at the moment. Sue x
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Hi there Sashapet, I have now downloaded the Food Maestro App on to my phone, bought Kefir yesterday (I will be making my own culture) and felt much better after drinking it.
Surely you wouldn't have been diagnosed with UC without clinical signs? In which case, you should always have access to a team of people to help. Though I don't know if that would be through referral by your gp. I suppose it's possible you could IBS as well when the UC is in remission? Not an expert though. I hope you get some answers soon. Roberta
I had a clinical diagnosis of UC in 2002 but as I had been in remission for over a year I was signed off last year by my consultant. I have a new referral and meds that have helped - at last - to call a temporary halt to my constant bathroom occupancy!! But I feel wiped out and hope that picks up soon. Getting rid of the pregnant look would be good too!! Thanks for your good wishes. Sue
I had microscopic Ulcerative Colitis diagnosed by biopsies and responded to Asacol. I asked my GP if a person with a 'spastic colon' diagnosed in the 1980s could also have UC and he said yes. By what I understand they are different - one is to do with the muscle tone/spasms and the other is an auto-immune response.
Meds are working but what to eat is still an issue!!!
FODMAPS worked well for me. There are other foods that bother me that aren't FODMAPS, but it was a key starting point for me to figure out my food triggers. Now I still get flare-ups which are frustrating and I'm still working out, but FODMAPS helped to solve my day-to-day diarrhea issues
Great. I have stuck to foods on the FODMAP list for the last couple of days and noted their effect on my digestive system but I think the meds have worked wonders on slowing things down. I no longer feel like my insides are doing battle with my food!
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