Flaring again, please help

I started flaring again about a week ago and am feeling sicker than I have since first getting UC. I quit smoking 2 months ago and the first month and a half I felt like I was in remission. Then I had some major stress happen and I ate really crappy for a weekend (2 whole pints of Ben&Jerry's by myself...I know...stupid...) and now I'm bleeding again badly and waking up 4-6 times a night with the urge to go with more urges during the day. Usually nothing comes out but bloody mucous. My rectum hurts and my tummy keeps telling me I have to go to the bathroom even though half the time nothing comes out. Lots of gas too...

I started using Rowasa nightly again about a week ago when this first started happening but I am only getting worse. Usually, when I start the Rowasa I feel better within 2-3 days. I called my doctor and I guess he is gone for the next month. The nurse is checking with another GI there and is going to call me back with advice. I am scared though. Even though I had been mildly flaring ever since diagnosis, I had (sort of) forgotten how badly this sucks when it gets worse.

Should I ask for Cortifoam or keep going with the Rowasa for a few weeks first? I am scared of the Cortifoam sort of. I've never used it, but my GI seems pretty anti-steroids in any form unless absolutely necessary. Please give me advice. Thank you.

I agree--get into see a doc, because it sounds like you probably need Prednisone to kick this one in the butt! Your symptoms sound a lot like my usual flare and the rectal meds only do so much--for me it is usually inflamed further up than they can reach so I need oral too. I have never used cortifoam so I'll let someone else speak to that. Good luck and feel better.

Quincy is pretty knowledgeable about ending a flare with rectal meds and without pred, so hopefully she'll come along soon.

I hate to say it, but it's the smoking. Are you so anti-smoking that you wouldn't start up again?

I understand.

I've been in a flare for well over two years, and it started almost three months after I quit smoking.  As a smoker I ran marathons and, except for some minor flares, was in uc remission for years and years.  If my current treatment doesn't improve the colitis by next month, I'll start smoking again.  And I'm loathe to do it,  but having lived with the terribleness of this disease for this long, enough is enough. 

Having a couple of cigarettes might get you through to your doctor's return.  You've already quit once, so you know you can do it again.  This time, come up with a plan to quit smoking with your GI.

Good luck.

Sorry you're not doing well. Maybe give the Rowasa a week or so more, and take a Probiotic if you're not already. Then, if things aren't getting better, maybe consider a quick course of pred to get things back under control. You've also got a LOT of other meds to try, so I agree with you about not wanting to go back to smoking.

I don't know about the fiber...I don't take a fiber supplement. Asacol + Rowasa + pred put me into remmission. I did a pretty quick course of pred and came off it without any real problems. Then tapered the rowasa...went to doing it every other night, then to twice a week. After about a month of that, I switched from Asacol to Apriso, mostly for convenience. I was having a lot of trouble remembering my noon dose, and I knew that missing it all of the time would increase my risk for flaring. Also, I was seeing undissolved caps in my stool a lot. I've been on it about a month now, and I am still in remission.

You're welcome, and thanks! I'm so happy to be in remission, too. My son is nine months old now, and is so active and playful...I know I wouldn't be able to enjoy him like I want to if I were flaring. I did a pretty unconventional dosing on the pred...a lot of people on here disagreed with it. However, if you want me to share what my doc prescribed, I will.

Ok, so here it is:

40 mg for five days, split into four doses (breakfast, lunch, dinner, bed)
30 mg for five days, split into three doses (breakfast, lunch, dinner)
20 mg for five days, split into two doses (breakfast, lunch)
15 mg for five days, all at breakfast
10 mg for about a week (waiting for GI appt to discuss the next step), all at breakfast
10 mg every other day for about two weeks (wanted to wait to quit until I got through a two-day-long job interview that required flying just in case I had trouble)
Done!

I did have some trouble when I got down to 10mg, but not until I'd gotten a horrible, horrible, horrible case of food poisoning. I know it was that because my SIL and I both had it at the exact same time after eating at the same restaurant. I was having some trouble with diarrhea again, but managed to get it all sorted out. I actually think avocado helped get me regulated again. I've been great since!

Sara, I agree with fruitgirl that avocados are a great food to have if you're flaring, so maybe that might help you if you want to keep your diet simple and eat easily digestible foods for now.

If you're going to need steroids, I think that it's better to get cortifoam before starting on prednisone, because it seems to have milder side-effects. However, that also depends on how bad things are and on how badly the doctor wants you to get the flare under control. For me, cortifoam seemed to take a bit longer than prednisone to have an effect.

Some time ago, I tried starting smoking again to see if it would get a flare back under control, but it
didn't work and probably made things worse for me. Also, it then took quite an effort to get back off them.

Also, I switched from metamucil wafers to metamucil smooth and found that to be easier to digest.

Hope you're fine soon.

The first 2 times I was on prednisone it knocked out the flare up. Side effects the first time were insomnia, craziness, hair loss... but the next 2 times the side effects were minimal. Unfortunately it no longer works and I'm now waiting for 6MP to kick in. Can't figure out what foods other than dairy. alcohol, onions annd broccoli exacerbate flare-ups. This flare up has lasted 6 mos and I'm losing my mind.

OMG...you don't need prednisone.

Tell me why you quit the Rowasa before starting them again since flaring?

I've started back on my nightly enemas because I was starting to flare again. I know I'll be on them for about 2 weeks anyway.....I'm pretty much back to normal, but my flare wasn't too bad at all, however, this time I had a bit of blood.

Please be patient Sara...some of the bms last night are probably caused by the lactose in the ice cream.  2 issues, but hope you enjoyed the ice cream. 

Regarding the metamucil...I used to use the Smooth...(.not the sugar-free!)....after supper , but I'm using the capsules now and prefer them much better.

Consistency is a good thing...and I would suggest that you make an appointment with your doc for when he gets back and use the Rowasa consistently until you start to feel better. Then start to taper.

I think the bottom line is how much effort you're willing to put into the patience department.

Oh, you could ask your GP to prescribe the Proctofoam...it's a lower % of steroid and you could maybe use it in conjunction (in the mornings) with the Rowasa.

You could also ask the doc maybe for some dicyclomine to help with some of the discomfort, maybe that will calm you down a bit and help slow down your colon a teeny bit.

If you show some improvement over the week or two..it's working....you may need to stay on the enemas nightly for a month before you can taper.
My longest on the enemas was almost 4 months nightly...it was a tough time, but again...my doc's reaction was "we'll do the stool samples to be sure nothing is going on...but be patient", and I was.

Hang tough...try to take it in stride as best you can, but your flare will not go away overnight. I think you just haven't learned how to use the enemas effectively as of yet.

I'm happy to hear you quit smoking...that in itself will add to the issue, but it doesn't mean you cannot get through this as well. It might take a tad longer.

quincy

Hi Sara....I think it all depends on how your flare has progressed with the combination of you only being on maintenance of once a week Rowasa, forgetting pills and quitting smoking. The ice cream isn't an issue, I wish I was there to share it with you..lol! What flavour did I miss?

Getting worse before you get better...well, depends on the where or how high the flare is. It also depends on how many symptoms you might show related to the inflammation present.

You're learning.....humbling isn't it?

Is your UC throughout or limited?

Curious what you eat during the day.....and if your allergy drops as well as the Viactive have artificial sweeteners in them.

The fibre supplement can help bulk the stool a bit, but if the rectum is inflamed and you have pooled blood or mucus...that will trigger the urge to go. Dicyclomine can help.

Could you maybe purchase the herbal cigarettes??? maybe just the action of using them 3 times a day might help?

What do you have for breakfast??

quincy

I didn't suggest she use pred now, just if things don't start getting better soon, after she starts a probiotic again and is also back on rowasa nightly. Yes, I used pred to get out of my flare, but I didn't use it until I'd basically been flaring for four months. I guess I was just throwing it out there as an option if she really needs it.

Also, Sara, you might really want to consider Apriso or Lialda if you're missing a lot of doses with Asacol. My doc thinks that a big reason people have flares is because they are lax about taking their medicine (whether it's intentional or not!). It's amazing how much easier it is just taking it in the morning. And, I feel a lot less incumbered by my UC. I'm not one who minds taking meds, so it's surprised me how much I like it.