New Guy, Dealing with Flare Up, Looking for Advice

Welcome to the forum, mlf231. Sorry you are having a tough time!

Do you know how far up your inflammation was when you were diagnosed?

The best way to treat UC is to use rectal meds plus oral meds. Will you please call your GI and ask for rectal meds? Depending on the extent of your inflammation, you should ask for 4g mesalamine enemas (rectum plus sigmoid colon) or maybe just mesalamine suppositories (1g).

To get yourself feeling better fast, ask your GI for some prednisone (either oral or rectal). Since you aren't bleeding or having a tremendous amount of diarrhea, you can probably just go ahead with rectal meds every night for a week and you will feel better pretty quickly.

Thank you both for the quick replies. I just got off the phone and left a message asking about combining enemas and prednisone with the Lialda, so hopefully I hear back soon. One thing I have noticed while lurking around these forums is that quite a few people take enemas wen they have flare ups. What is it about enemas that can help?

kazbern said...
The oral mesalamine doesn't effectively treat the rectum, and are not terrific in the sigmoid colon, either. Since most UC flares start in the rectum, it is best to treat from the rectum. Oral meds can be helpful for people with inflammation above the sigmoid colon, and can be used to protect against advancing disease from a maintenance perspective, but if you have UC you should really have rectal meds in your life from now until forever.

That doesn't mean you have to use them daily forever, but for now you should. Once you are symptom free, and I mean FREE, you can start stretching out your doses. It took me a really really really long time to beat rectal inflammation into remission and then I had 3 good years of no rectal symptoms, which ended about a month ago. I used my Canasa for a solid week, then dropped down to every third day, and I'm feeling great again.

Ah, thanks for the explanation. It's definitely been very difficult for me to accept that I have to be careful with what I eat now, especially with flare ups, and the fact that I will probably have to take enemas from here on out isn't helping, but if it really helps that much I'd be more than happy to suck it up (pun intended). I feel like I have brief respites for maybe a couple weeks at most where I have no symptoms, but the flare ups seem to come back pretty quickly. I feel like I'm going insane and am desperate to get back to some kind of normalcy.

How have you been doing with your most recent flare up?

You're probably not going to like this but since nobody has mentioned it yet, alcohol and UC are usually a very bad combination in most of us.

welcome mlf !

hang in there - and yes to the butt meds

Called my doc today and he doesn't want me to get on enemas yet. He just upped my Lialda dosage to 4 at night and 2 prednisone in the morning as well as 2 at night. He said if the flare doesn't subside with the prednisone/Lialda combo then he'll prescribe me something new. Here's hoping I wake up feeling better tomorrow, the abdominal pain keeps getting worse as the day goes on, although, the BMs seem to have subsided for the day.

Based on this info, I think you need a new DR. The demonstrated best approach to treating UC is via oral and rectal meds. Did you ask your GI why he didn't want to prescribe them?

Oral steroids can be a great tool. What dose did he prescribe (2 at night is not enough info to understand your dose)? If it's less than 40 mg/day it's a waste of your time. However, using steroids at this point might be overkill. You aren't really that sick. Oral steroids should be reserved for a time when you are desperate. Steroids are not particularly safe and shouldn't be used frequently or for a long time, so you should know now that this little trip down the steroid path is maybe not the best plan, although you will feel a lot better (assuming you're on 40 mg/day) by New Year's Day.

I would not take the pred until you are sure the other stuff won't get you to remission. Just fair warning! ;-)

It's your choice and I can't argue with wanting to have fun on the holidays with your girlfriend.

But your doctor is not following best practices. I don't know what "other med" he could rationally offer after Lialda except another oral mesalamine. He certainly hasn't given you the right mesalamine approach to fully assess your response to this safe and well-tested medicine.

The oral steroids should get you into remission and I hope you can maintain it after you wean off. You should ask again for rectal meds because that will be your best shot at a long term treatment plan with the least side effects.

You didn't mention urgency, and maybe the rectum was not so inflamed that he thought rectals could help.

If you were diagnosed with a scope, the GI has seen you colon and folks here have not. Rectals are generally a good standard of care, and pred can be hard for some to tolerate. There can be mood disorders and anxiety. Taking half at night is likely to interfere with sleep.

The main problem with spicy for me was burning diahareh. Spice itself never bothered me too much if my stools were formed.

Your UC may have caused considerable dysbiosis of your gut microbes, and you may be more sensitive to gluten or dairy as a result. Less stool copuld be microbe depletion. A large part of the dry mass of stool is microbes.

Although bloating and constipation do go with IBD/UC, that can also be some IBS secondary to the IBD. It is something to watch, especially since you do not report a lot of mucus and blood. Long term the treatment is a little different if you also have IBS.

Some slippery elm may help with the constipation, and it will not interfere with the Lialda or pred. You can also consider a probiotic. In may take a few tries to find a mix of strains and strength that seem to help you. Also, taper up because to much too fast can cause UC like symptoms.

This disease can be very individual. Good luck.

wow - lots going on in this post and replies. :D

I just wanted to add my two sense... hehe.

As for how to survive through the New Year - I believe alcohol was one of the triggers for my Ulcerative Colitis. I generally had to avoid it while flaring or I might as well have been pouring it down my throat while sitting on the toilet.

I did find that having a couple really strong drinks made from clear liquor and then not drinking the rest of the night, helped. I was doing Vodka Gimlets (good vodka, lime juice, lime wedge.)
about 2 months before I had my colon removed I was Maid of Honor in a Wedding. I have no idea how I survived that night without crapping in my dress, but I did!

I made sure to not eat basically the whole day. I did eat at the reception and went to the bathroom a few times, but not eating for as long as possible helped.

As far as rectal meds... my doctor never wanted to prescribe them either. Most doctors avoid prescribing them because patients tend to NOT take them as prescribed. So it's pointless. Without consistency the meds never really have a chance to start working. I found the enemas incredibly painful and impossible to "hold" but the suppositories and foam were no problem. I also had UC throughout my entire colon, so even enemas weren't going to get to all of my diseased colon.

Most doctors start with Lialda and prednisone to try to get someone out of flare. If the prednisone and 4 Lialda work - they taper down the prednisone and then get the Lialda to 2 pills as a maintenance dose. A friend close by played the Lialda/Prednisone game for a few months but is now on 2 Lialda daily and off the prednisone and in remission!

If Prednisone and Lialda don't get you in remission or if you can't come off the prednisone without flaring up again - they will likely want to get you on 6mp or Azathioprine or Imuran (all these are the next step up in meds to fight UC.)

Hopefully Prednisone can get you into remission and the Lialda will keep you there.

The best thing you can do to have a good night with your lady is Mind Over Matter.
It can be hard. I was crapping my Depends almost once a day for months and I still managed to have a couple good times out with friends, like the wedding I mentioned. It's hard but stay positive and focus on your girlfriend. Good luck and happy birthday to her and New Year to you both!! :)

 

I know this can be a tough time of year to manage with all the festivites, food, drink, etc. I definitely agree that the rectal meds would probably make a big difference here, although the pred may give you some quick relief.

When things are good for me, I can usually stretch a little with the foods I can tolerate. When I am flaring, that's an entirely different story. Eating spicy thai food when I am flaring - that makes me want to cry thinking about it! I had to give up coffee altogether - I don't know what it is, but it just doesn't like me. You will figure out what works for you - diet can be really helpful here. I am sure you will have fun celebrating your girlfriend's birthday - good luck!!