Do I Definitely Have UC?

Reading about other people's experiences with UC on here makes me wonder if I have UC at all. There are some similarities but also a lot of disparities. Here's how I came to be here.

I have always had a relatively healthy diet and a healthy bowel. I have never had to think about my BMs at all - I was just your regular twice a day person whose stools could win trophies in the annual 'Perfect Bowel Movements' awards if there was such a thing. In September 2010 I went on holiday to Turkey, as I do every year, and was not unwell while there but once I returned to London I came down with a virus which led to a chest infection and I was put on antibiotics. I took the antibiotics (Amoxicillin) for two days but gave up on them because they gave me terrible diarrhoea. And that was it really - from that day to this I have had chronic diarrhoea. I went from being a tidy twice a day girl to someone who has to visit the bathroom up to 15 times a day with explosive and acutely embarrassing diarrhoea. I was referred to a gastroenterologist who ran all the usual tests for bacteria etc. and I was asked about the nature of my BMs in terms of whether they were bloody - and I replied that they were not. Eventually I was referred for a colonoscopy and the gastroenterologist who carried this out noted some areas of inflammation and took small biopsies at various intervals. These were analysed and the histopathology report concluded that I had 'moderately active ulcerative colitis'. It was great to have a label for my condition at long last (I was only diagnosed a couple of months ago and so had been dealing with the symptoms blind for well over a year) but less great to learn that this was not something that I could just get treatment for and go back to normal life.

I was prescribed Asacol 400mg x two x three times a day and have been faithfully taking my meds since, but with little discernible improvement in my symptoms. My symptoms remain frequent and usually urgent BMs (I was up three times last night for example and my tally today so far stands at five visits with plenty more of the day to go - it is 4.30pm here in the UK. Between eight and 12 times a day is usual). I have had no respite in the last 18 months - no remission at any stage. I never have any form to my BMs - they are always watery/liquid or at best 'runny' and, as I have said, somewhat explosive (I cannot use public/work toilets without being certain there is no one else there - way too embarrassing). It's not a good look. However I have never ever seen blood in my stools and this seems to be a characteristic of UC so is it possible that I have been incorrectly diagnosed?

There is no rhyme or reason to my toilet habits and no particular food triggers. I kept a food diary for when I first took medical advice and at that time I was eating a very high fibre diet with lots of fruit, beans and pulses so upon advice I switched emphasis to much lower fibre and I cut the fruit apart from occasional berries. I now follow a high fat, low carb model. I am finding the whole process of managing my condition very depressing although reading the stories of others does make me appreciate that things could be a whole lot worse and really I should count my blessings. From what I've said does this sound like UC to you or is it possible that there is another answer?

Hi there. I'm am in London as well and it sounds like UC to me. I have uc since 2000.

I only used melasamines in my life to treat my uc in different form. But to get me out of a flare I always had rectal meds with oral meds. The melasamine can come in pills, suppositories, liquid or foam enemas.

I rarely saw some blood in my uc history but had lots of mucus, urgencies and constipation. Uc is so diverse and there are some main guidelines but with different sides. It can be confusing but for now you are not well.

You probably need more than the regular asacol maintenance.
Did you doctor talked toyou about other meds or he wanted to try the lower dosage first and see how it goes?

Where are you treated? Does your gp knows about your condition? Because my nurse practitionner prescribes me what I want and dosage I want. But ive had uc for more than a decade so im used to what works for me.

I think you need rectal meds. Can be difficult to do the liquid or pump at first. I started with suppositories 1g one each day for a month after my diagnosis. It helped a lot. Or you can try the foam or liquid enemas 2g before bedtime. You can do for a while and see how it goes. You might need stronger meds but it seems your GI is going smooth first.

It's a bit strange for the review but then again i arrived in the uk 6 months ago. But straight on the gp got me what I wanted.

I think your GI tries to go the non invasive way, very slowly with you. Because you are on the same dosage an me but im down to one trip a day to the bathroom. Before that I was on rectal meds everynight.

The thing is when you are first diagnosed sometimes GIs go slowly to see how you going to react. How long its been on your pills?

Yor GI should have send a letter to your gp about you new friend UC.

In Canada, where I'm from, the GI deals with your prescriptions usually because it's very specific however it seems in the uk everything goes under the gp. So I would get an appointment as soon as possible. Going that often to the bathroom needs to be treated. You can't stay like this. There are many options and treatments available for you and you shouldnt settle for being miserable and not confortable.

If you need more help im there for you.

stefanie

Yeah it's really the best forum for C and all you puns here. Ive try to look for a UK forum or group but it doesn't seem to be around.

It seems here all the medical attention is towards the drinking problem :P

LondonGAl,
it could be UC, you just do not have actual ulcers but more irritation of the colon and that is why you are not bleeding. If you took one drug for 18 months without any improvements, I would talk to the doctor again. I would highly recommend you to start taking probiotics and I mean a high dose of them. Also, take all of the dairy out of your diet for 1 month, in case you became lactose intolerant form the antibiotics. This is what happened to my husband many years ago.

I tried to read everything, but didnt' see you mention if you did any stool tests? Did you get tested for C. Diff?

With my pancolitis flareup last year i only had watery diarrhoea 7 times/day but no blood. There was only some blood when i wiped but no blood in the actual stool. So yeh not everyone experiences the textbook bloody diarrhoea. I do understand where you are coming from though; as i too had questioned whether this was actually UC but looking at the photos and biopsies it was all UC.

I second beachgirl's question: did you get tested for C Diff?

Well, I've had UC for 18 years and hardly ever have bleeding. In fact, I didn't have any for ever 10 years until this past January. I had very normal BMs all those years as well (even constipated half the time).  Even now I don't see blood but am still in a flare-up and the mesalamines won't work to control it. My symptoms now are sort of formed BMs, mucous (which can be confused with enema remnants if you take an enema nightly), gas, bloating and abdominal pains. So you can definitely have UC without bleeding and even if you have 5 normal colonoscopies in a row after one that points to UC.  Going to a doctor who was convinced constant bleeding and inflamation in the colon is the only way to diagnose UC is what put me into the flare I'm in now after a 10 year remission as he told me to stop taking my medication.

I would highly recommend you to start taking probiotics and I mean a high dose of them. Also, take all of the dairy out of your diet for 1 month

I agree with the advice given above. I know that you have avoided dairy for a couple of weeks to no effect, but this time try avoiding gluten for 2-3 weeks. I think many more people have gastro problems from gluten than from dairy.

And really increase your probiotics. If acidophilus doesn't help than try another brand, rather try other brands. Diversity is good when it comes to probiotics. I think it is especially important for you because it seems that ANTIbiotics may have contributed to your UC in the first place. Actually most of the people in this forum believe that antibiotics helped give them UC.

Good probiotics are Culturelle and S. Boulardii. Not one capsule a day but when gastro symptoms begin I take 2-3 each morning and evening. Another great probiotic is VSL#3DS which is by prescription from your doctor. Each packet is almost a trillion CFUs. Some members here have found relief by taking 2-4 packets a day.

Almost everyone who has tried rectal meds, especially mesalamine enemas, raves about their ability to relieve symptoms and help end flares.

Diet modification which can begin by avoiding gluten, and supplements like probiotics, are what keeps some of us in remission. You have to find whatever other diet rules and supplements that may apply to your individual condition. Everyone is different.