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Ulcerative Colitis
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Posted 10/10/2014 8:48 AM (GMT 0)
Hi everyone, I've been reading this forum a lot since I started flaring in August, but I think it's finally time I made a post.

As my signature says, I was diagnosed 5 years ago with quite serious colitis (pancolitis?)/ileitis, but was able to get it under control after being hospitalised, and have been symptom free until recently.

My current flare started with blood/mucus in my stool, then tenesmus, then diarrhea (9 times a day at its peak so far), then loss appetite/bloating and weight loss.

I've been to hospital a few times, both to see the specialist gastro nurse and a couple of times to A&E when I was passing large amounts of blood. The last time I went (a week ago) they did a blood test and told me my CRP levels were quite high and decided to put me on 30mg of Pred.

I've been taking it first thing in the morning, and it's definitely helped with my appetitie loss and bloating. I barely need to go to the toilet during the day anymore, and if I do, it's a normalish (for me) stool without any bleeding or tenesmus.

HOWEVER after I go to bed my symptoms seem to come back with a vengeance. From around 10pm to 8am I wake up every 3 hours or less and have to run to the toilet (sometimes I don't make it...) to pass a bloody liquid stool with lots of tenesmus and sometimes gas. Sometimes it seems like it's pure blood that I'm passing, as the toilet bowl is bright red, and there's lots of fresh blood on the TP.

Has anybody experienced anything like this? I'm feeling a bit hopeless to be honest.
Posted 10/10/2014 1:51 PM (GMT 0)
Welcome to the forum, UC UK, I'm sorry you are feeling so ill.

What do you think triggered this flare?

Some people split their steroid dose - maybe if you did that you'd have more control at night. I would also add that 30 mg/day might not be sufficient. And why not switch from the foam enema to a 4g retention enema to get you more coverage?

I'm glad you posted and I hope you stick around. There are others from the UK here who might have specific suggestions on how to manage the NHS, but it sounds like you are doing alright.
Posted 10/10/2014 2:07 PM (GMT 0)
Symptoms only at night

Splitting your steroid dose and switching enemas sounds like a great idea. Are you eating different foods at night that you usually don't eat during the day? For some individuals certain foods can be problematic.
Posted 10/10/2014 2:19 PM (GMT 0)
Welcome! I am thinking that 30 mg is too low a dose of prednisone. Usually 40mg+ is the starting dose then tapering down from there. You could contact your dr and see if they will up the mg. Try that to see if it takes you through the 24 hours. If it still doesn't then I suppose you could try splitting the dose between morning and evening. I've never done it that way. I always took all mine in the morning, but I always start out at 60 mg. You could also try changing to a steroid rectal.
Posted 10/10/2014 2:36 PM (GMT 0)
That is ironic I was just wondering the same thing. Seems like I go more at night lately than during the day which make me wonder about lying horizontal versus standing/sitting vertical during the day - Ileocecal valve comes to mind. OTOH it could be as someone mentioned something I consume once home from work.
Posted 10/10/2014 2:36 PM (GMT 0)
Thanks for the replies, everyone.

@kazbern, I'm not sure what triggered the flare. I did have to host a big family dinner around the time the symptoms started, and I was getting very stressed about that. But I've definitely had more stressful moments before and not flared, so who knows!

I will be getting some liquid mesalazine enemas next week due to my pharmacy being unable to source any more of the foam ones. Hopefully those will help.

I asked my GP about splitting the pred dose, but he seemed to think it wouldn't make a difference. Has anyone tried it with success? He did suggest upping my pred dose if things haven't improved over the weekend, so I suppose I'll try that next. I'm not really sure how much is safe given that I'm on Azathioprine as well, or perhaps it doesn't make a difference?

@IamCurious I don't eat anything drastically different in the evening, if anything it's usually a smaller meal than what I typically have for breakfast and lunch, and I rarely eat later than 6pm.
Posted 10/10/2014 2:40 PM (GMT 0)
It seems like one of the hallmarks of IBD is more active bowel disruptions at night, so I would chalk this up to just part of your flare. I don't think the steroids will interact with your other meds, but that is a question for your DR.

UC UK, I sure hope you don't stop preparing family get togethers in order to avoid future flares. The unpredictability of this disease is just ridiculous.
Posted 10/10/2014 7:27 PM (GMT 0)
How do they chalk the ileitis down to "UC"? Is it mild backwash ileitis or something more severe?
Posted 10/16/2014 7:06 AM (GMT 0)
Hello. Quick update from me. I ended up going to hospital on the 11th because I was feeling pretty worried. I've been on IV hydrocortisone since, and will switch to oral steroids today.

I'm not sure I feel much better though. I've been having lots of bloating and abdominal discomfort and have been passing strange stools that look to contain lots of undigested food. The bleeding almost stopped since I came in, although I did pass some blood this morning :(

My blood tests have shown my CRP has dropped from 18 to 4 which is something I suppose.

Will hopefully have a flexible sigmoidoscopy today or tomorrow and see what's really happening.

Re: ileitis, I'm not sure. I just saw it written on the notes from my colonoscopy. GI has never mentioned it

Post Edited (UC UK) : 10/16/2014 1:09:53 AM (GMT-6)

Posted 10/27/2014 4:33 PM (GMT 0)
Just an update for posterity, I know this forum turns up in lots of google searches.

Switching to oral steroids made my CRP go right up and I started passing more blood, so my GI started me on Infliximab (aka Remicade).

I went from passing 4 loose stools per day with bits of blood (even while on 400mg/day IV hydrocortisone + all my other meds), to passing 1 normal stool per day pretty much overnight after my first Infliximab infusion! :)

I was really scared that I'd need to have surgery since the cocktail of drugs I was taking seemed to have plateaued in its effectiveness, and I'd been on high-dose IV steroids for almost 2 weeks.

My doctor says I'll probably have to take Infliximab for at least a couple of years, but I'm okay with that.

I'll also carry on taking my Azathioprine because it helps the Infliximab stay effective.

So anyone who ends up in a flare that won't seem to end, don't give up hope! My GI also mentioned a new drug called Vedolizumab which will be available in the UK next year, so that's yet another option.

Thanks all.
Posted 10/27/2014 6:20 PM (GMT 0)
How did you get a doc to agree to put on long-term Infliximab for UC? Did they make out on the application you had Crohn's? There is another UK member on here who was forced to go on a clinical trial just to get on Simponi (same thing as Infliximab basically) for her UC: it was the only way she could get more than 3 doses. That seems to be standard across the country and not just her hospital's policy.

Anyway, I got on Remicade (Infliximab) years too late, so it didn't do a thing and I lost my colon. Crohn's colitis. Permanent bag. Symptoms coming back. Oh what joy.
Posted 10/27/2014 6:31 PM (GMT 0)
I wasn't aware it was an issue, he suggested it pretty readily.

He said in the past it was used as a last resort, but that it's actually far more effective to start it early when a flare is dependant on steroids.

I did mention the cost and asked whether it might be withdrawn as a treatment by NICE, but he said it wouldn't be a problem.

I'm sorry to hear it didn't work out for you. From reading this forum over the past few months I realise I've been very fortunate to have had good gastro docs and effective treatment plans.
Posted 10/27/2014 9:38 PM (GMT 0)
Well, the person I was talking about above goes to St. Mark's in north west London - supposedly the top place in the UK for GI disorders.

Who's your doc if you don't mind my asking? Sounds like you managed to find the one proactive, non-useless, GI in the country.
Posted 10/28/2014 12:03 PM (GMT 0)
So apparently the guidelines in the UK are to use Infliximab to treat refractory colitis only if Cyclosporine isn't appropriate (www.nice.org.uk/guidance/ta163), and since I'm already on Azathioprine, I guess there wasn't any point in trying Cyclosporine.

I don't know if I should name my gastro consultant directly, but he works at Manchester Royal Infirmary. The other consultants and registrars I've spoken to there have also been very knowledgeable.
Posted 10/30/2014 11:48 PM (GMT 0)
Okay just saw this thread... what?!!!!? What the hell kind of voodoo did you put on them to get them to put you on maintenance infliximab?? I'm happy I at least got the opportunity to try simponi through the trial but still... I'm so confused... were they lying to me about the funding issues? :(
Posted 10/31/2014 2:29 AM (GMT 0)
The poster I was thinking of has now posted. >_>

@UC UK - Those guidelines sorely need to be updated. Anyway, if you go to the next page you'll see it talks about an induction course of 3 doses - no mention of maintenance treatment at all.

Personally I suspect your GI used the Crohn's angle to get you funding for maintenance Remicade. The ileitis would probably do it. You are lucky in your GI, tbh.

Post Edited (NiceCupOfTea) : 10/30/2014 8:33:07 PM (GMT-6)

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