How do you know whether a flare is mild, moderate, or severe?

Hello, first of all sorry I've not been on here for ages. Even after all these years I find my UC very hard to cope with mentally, and get overwhelmed and frightened when I talk about it or think about it a lot.

I'm having a flare-up at the moment, but I'm not sure what to do because I have no idea whether it is mild, moderate, or severe.

It started just over a month ago. I began having pain and nausea, but no bleeding (I have always had nausea and vomiting with my UC along with my other symptoms). I carried on at work until the pain got too much. I spoke to and saw the GP, this was about a week later. Our doctors has locums (is that what you call a temporary doctor?) all the time, so I got one of those. She prescribed me a steroid enema to take, and some oral steroids for emergencies (as the doctors would be shut over Christmas).

I always cut back on food when I am ill, so I switched over to Complan. I believe I am on the maximum dose of Asacol all the time, so I don't think that could be increased (800mg tablets, 2 tablets taken 3 times a day, usually at mealtimes).

I was reluctant to take the steroid enema after I had read the leaflet warning me of the side effects. I have been on intravenous steroids twice in the past, which were then reduced to oral steroids after leaving hospital. Both times I have struggled to come off the steroids, and both times it has taken me years to do so. I have always gotten on great with the steroids, except the last time. I suffered 'moon face' for the first time. As most of my hair had fallen out from being ill, it was a huge blow to my confidence. It did eventually go back to normal, but now I am reluctant to take steroids unless I have to. I also really hate taking enemas. So I didn't take the steroid enema.

I started to get better, and began eating again.

I thought this was a mild flare, as I am not bleeding yet, but in my hospital appointment (routine), the doctor seemed concerned, which frightened me, and was talking about possibly trying other treatments. I was unable to ask the doctor the questions that I wanted to, or even to have a proper conversation with him, because I was frightened and started crying. (This is normal for my hospital appointments, I very often faint in them aswell.) I'm terrified of surgery, I'm also scared of being taken off Asacol. He mentioned Imixiflab but I have no idea what he said. I wanted to ask him what he had in mind but I was too frightened of what he might say.

But then about a week ago, the pain came back. I stopped eating immediately and have only been on Complan and fluids since monday. But the pain will not stop. It isn't constant, apart from the achiness, it comes and goes, at the moment I am having about 2 painful episodes a day. I am going to the ladies about once a day, and it is watery and painful. I am having lots of gurgling aswell. But I am still not bleeding, it has never been this painful without bleeding before.

I am going to ring the doctors on monday for medical advice, but it is barely saturday and I feel really alone. My sister is not speaking to me, and my mum is so busy she only checks on me about once a day. I have been reading things on the internet, but now I'm frightened again.

I have tried reading things on the internet, but it doesn't really help because I don't know if this is a mild or moderate flare. I would have said mild, as there is no bleeding, but it has been going on for about a month now. Does anyone know?

Thanks for any input you might have

Post Edited (Dizzy2002) : 1/16/2015 11:09:13 PM (GMT-7)

I'm not really sure why you want to label your flare. If you're miserable then you're miserable and you need to do something about it. If you don't it will get worse.

Take the steroid enemas - they have to print those same side effects because 5% does get absorbed into the blood stream, but it's so unlikely that anything bad will actually happen, it's perfectly safe. Plus they'll make you feel better straight away.

Infliximab is a biologic drug, so much stronger than Asacol. It's taken via an infusion every eight weeks or so.

The steroid enemas were a life saver for me. You can use them for three weeks and see little to no side effects. I started getting night sweats and some hormonal disruptions when I used them past 4 months, but I was tapering off them by then anyway.

Remicade is a drug that is given through an IV or intravenous line. It's given slowly via an infusion pump over about 2-2.5 hours.

Did you have a blood test done before your hospital appointment? If so, maybe your inflammatory markers were high. Frankly, if an NHS doctor is suggesting Infliximab for UC, I think you can safely assume your flare-up is moderate to severe, and not mild.

I'd find a way of communicating, even if you have to write down your questions on a sheeet of paper and hand them to the doctor. After 15 years of having Crohn's in the UK, I have found that you have to ask about most things, such as test results, details of your disease, etc. - not many doctors bother to explain things unless you ask. I can sympathise to a degree; my social phobia used to result in my wanting to be in and out of the doctor's consulting room ASAP. And when I was in there, I felt too awkward to ask for details.

It did me no favours at all. I became quite bitter and angry as a result of feeling fobbed off for years, but it was partly my fault. Eventually I forced myself to interact with doctors instead of just sitting there like a brick wall. My desire to have answers is greater than my social phobia these days.

Dizzy you have every right to deal with this however you can mentally, I have a very hard time too, but it has gotten easier with time.

Just make sure you don't keep your head in the sand too often or too long. That was my problem too.

Take the ennies!

Thanks for the replies.

DMC2011-Thanks, I thought it was getting better with time aswell (been about 13 years now), but it must be only in remission, because now I am flaring, my head is up my arse!

I'm having issues with the enemas at the moment, I'm going to make a new thread for it.

Happychick-Thanks, I'm glad it's not just me. Even in remission, going out for a meal etc. is really stressful.

I'm the same, I'm in terrible pain and constant gurgling colon. When I go for to urinate, I have watery stools coming out at the same time. I haven't eaten anything except Complan since last monday. But the GP seems to think it's not that bad, she said I would have to be having diarrhea more than 6 times a day.

Yes, I'm in the UK. It's so frustrating because the GP's don't take UC seriously at all. The hospital doctors are much better, but I can't get to them because the specialist nurse never returns my calls. Also I have been unsure whether or not to ring, as I am still not bleeding-it would almost be a relief to start bleeding at this point!

Where do you live, are you UK aswell? I always thought mine was mild, as it doesn't go very far along the colon, and I've only been in hospital twice.

It's so stupid that you have to be really ill before they will do anything! You know yourself what UC pain feels like, and if you have told them that it is your UC, then they should listen to you.

I was tried on Azathioprine in hospital (2010), but it made me vomit violently for 24 hours, so they had to stop. Maybe if I hadn't had a reaction to it, I would be taking it like you are.

Aah poor you, the thought of surgery is terrifying, but surely they would try you on biologics first? Surgery is so drastic, if I was a doctor I would try everything else first.

Thanks, it hurts a lot.

No I have seen the hospital gastro doctor, I had a routine appointment, so we discussed my flare-up then. It was last week though, so the GP advised me to ring the gastro nurse, which I did, but she hasn't rang me back yet. So I was debating whether to ring again or if she just thinks I am wasting her time.

Thanks, I will try again on monday :)