Why is my bleeding getting worse?

Hi guys, I've mentioned this in another thread but though I'd give it 1 of its own to hopefully get a few more responses/advice.

Today will be 3 weeks to the day since I was diagnosed with UC and was started on 4.8mg oral mesalazine and 40mg prednisone tapering down 5mg per week. Currently on 30mg Pred.
Within the first 24hours my BM's were down to 3/4x per day from 15/20x per day. Within a week BM's were down to 1/2x per day with hardly any pain and the blood was much less. The blood never fully stopped but it was getting very close up until around the 2 week mark, since then it has got worse and worse each day and now at the 3 week mark it is back to turning the whole toilet bowl/water bright red again. My other symptoms such as frequency/urgency/pain seem to be doing ok though and I'm still only going 1/2x per day although the stools are still loose/mucusy which hasn't changed all along.

I know most of you guys recommend rectal's and I am in the process of trying to get hold of some but it is proving to be a struggle due to a Ibd nurse who thinks they aren't necessary.

Is it likely that the pred taper is causing the blood to return?

Is it likely that the pred taper is causing the blood to return?

Yes, prednisone is a great temporary rescue medication that quickly gets rid of our uc flare symptoms. Pred buys us time while our other medications have more time to work. As we taper, symptoms can return when our maintenance medications aren't sufficient. That is likely your case, your maintenance medications aren't sufficient and you'll continue getting worse as you taper down the prednisone.

I would recommend holding at your current prednisone dose and contacting your doctor. You might end up needing more medications (like the rowasa/pentasa enema) or possibly even stronger medications like Azathioprine/Imuran or 6mp. Certainly try the enemas first.

My GI and IBD nurse couldn't prescribe me rectals fast enough. I was the one who was massively reluctant.

Wait, what? Just read your last post. Enemas should reach the whole left side of the colon: if your disease is further up from that, that makes it sound, well, like Crohn's. I hope I'm wrong on that. Either way I'd recommend going on the azathioprine at this point. I know it seems fast, but most of the time it is better to go too fast than too slow. My first hospital messed me around for 5 years before finally putting me on azathioprine, by which time my disease was so bad azathioprine couldn't touch it. Same story with Remicade a few years later.

Edit: I'm also not sure how you're getting bleeding with no rectal or left-sided disease.

Post Edited (NiceCupOfTea) : 8/19/2016 9:39:24 AM (GMT-6)

I think their talking rubbish to be honest nicecupoftea, I've only had a flexi-sig so they can't know if it goes any further than that. Am I correct in thinking that rectals would still treat as far as a flexi-sig goes?

If I have to go on the Aza then so be it but I just don't get why they won't let me try the rectals first. All my other symptoms seem to be fine and I'm back to living my life pretty normal apart from the blood. It's 17.30 now and I've been to the loo once at 07.30 this morning, ate loads of food and feel good. Is it not possible that I'm still getting better even though I'm still bleeding quite a bit, I certainly feel ok. I just don't want to take anything if I don't need to.

Start the azathioprine, prednisone, and rowasa/pentasa enemas. You have a severe case of uc and therefore it's silly to take your case lightly. Better to hit your inflammation hard and early. You can always taper off of things later once you hit remission. Controlling uc is your first priority, leave concerns of too much and too soon for later. Regarding too soon, there's no such thing. Every case is different, some require strong medications early, others stay on mild treatments forever, and we don't get to choose what hand we're dealt. All we can do is respond with an appropriate treatment and hope for the best results.

Uc is an autoimmune disease (or at least an immune deficiency) where the immune system attacks our large intestine causing inflammation, bleeding, diarrhea and pain. The first line of treatment for uc is anti-inflammatory mesalamine/mesalazine and examples are asacol, pentasa, Rowasa. The maximum effective dose is 4,800 milligrams oral and 4,000 milligrams rectal route. If that's not enough than immunomodulators are also added like azathioprine/imuran or 6mp. Immunomodulators intentionally lower your body's white blood cell count. WBC are your immune system's attack dog, directly causing inflammation. The less WBC you have, the less inflammation your body can cause, and the better your uc symptoms get.

We always need more medications and higher doses when we flareup. Once we reach remission it often takes lower doses and sometimes less medications to sustain remission in a maintenance dose. You will neec a maintenance medication for life but which med and which dose you find out after achieving remission through a process of elimination.

Sounds like a severe case to me, if your blood has increased substantially despite being on mesalamine for multiple weeks, as the opposite should be happening with a mild case (that is, you should be getting better). Mesalamine works within a few weeks time, pretty fast.

at this point, there is no way i would call what you have severe - you responded quite quickly to the meds - residual bleeding can be tough for some, but the lack of rectal meds could take care of the problem - i would not do anything until i tried the butt meds first !

any chance you have some hemorrhoid involvement ?

oh, and don't be too alarmed by the blood - one drop in a bowl full of water can look like mass carnage - but it's not - we can seemingly lose a lot of blood with little overall effect - not saying you shouldn't be watchful, just try not to let it be the deciding factor on which direction to go -

good luck on getting some anal ammo !

Haemorrhoids did cross my mind but I thought the flexi-sig would of showed that up, unless they'd come since then of course. Its most definitely more than a few drops though, I put tissue in the toilet first so I could see the stool and their was long streaks of blood all through it.

Anal ammo, I like that. They are really becoming a pain in the arse though, might just have to buy some online from abroad!

31 years with UC-Cortenema works magic for me-my bleeding is in rectum-i do a cortenema or a rowasa almost every night.Have mail in so i get 90 day supply of both

Nicecupoftea- That's exactly what I thought but I can't even be bothered to chase it up sadly, I've spoken to her 3 times now regarding this and she's been nothing but dismissive about the enemas. I've no confidence in her whatsoever. Hopefully when I meet the gastro face to face in 2 weeks he's a little more cooperative.

3timechamp- it seems a lot of people have similar results to you with the enemas, hopefully I get hold of some soon.

You should consider getting a full scope so you know what you're dealing with. It's hard to say the rectals will be the help you need without knowing if you've got pancolitis. Have you had stool tests? If you're only going 1-2x a day right now, with blood/mucous, maybe you should start rectals, hold the course of pred steady a while longer and see if you can get things to clear up.

Request stool tests to check for pathogens. Often GIs skip this, but if you have one, you need to treat it.

I got the same response when inquiring about the mesalamine enemas. The doc said I have pancolitus, they would not be helpful, I haven't really pushed the issue though. I got a hemoroid situation, so if I get blood it's from that...I think but I dunno, these days I don't know anything anymore. 🙁

I don't think anyone said not to use rectals. i think what people have been saying, is to use recatls no matter what, but be aware that rectals alone may not be enough depending on individual circumstances. It would be great if we could all just use rectals and be 100% healthy, but unfortunately it doesn't work like that.