Newbie, any advice on meds?

Hi everyone! This looks like a great place to get some information so I hope some of you can offer some advice or opinions. I am 34 yrs old (female) with 2 kids. I recently got diagnosed with UC on Aug 20 after colonoscopy with biopsies. Looking back I had relatively mild symptoms for at least several months, but then BAM all of a sudden I had horrible uncontrollable bloody diarrhea and I went straight to GI specialist and had upper & lower GI scope done 5 days later. My Dr. said I had a "rip roaring" case of colitis and was unable to get past my sigmoid due to the inflammation she was afraid of perfing my bowel so she stopped there after getting biopsies. She wants to do another colonoscopy after the acute inflammation comes down in November, so I am scheduled for Nov 21st. I started right away with 50 mg pred for 1 week, then started tapering. Went to 40 for 2 weeks, and I just started 30mg today. I will continue taper until I'm on 5mg for 2 weeks ending sometime in early Nov I think? I was also put on mesalamine enema and Canasa for 1 week following colonoscopy but have been finished with that for a few weeks now. Also have been on 40 mg/day omeperazole since I started pred as well. So right now I'm actually just on 30mg pred and omeperazole and doing really well. When I went for my follow up a wk after scope, my Dr. just said to continue my meds and then after my next colonoscopy we will have a better idea of the extent of my UC and can figure out a maintenance med such as Lialda. Sounded like a good plan to me, but after doing some research, I see a lot of people are already ON the oral mesalamines and made me wonder if it's normal to wait? I'm just afraid that after I taper off the pred, there is a few week span where I will be on NOTHING before my next colonoscopy, and I'm terrified that I could flare up again. Of course I will call if I have any issues before then, but I'm wondering if it's ok for me to be on nothing at all for several weeks after this first flare up that could have sent me to the hospital if I didn't get it treated asap. I've heard good things about Lialda, but also that some people don't react to it well either so maybe my doc doesn't want to stir the pot and add it, but I didn't know all this info when I saw her last. So I guess I'm just looking for reassurance that this is ok, or should I be asking earlier for a maintenance med before I come off the pred before my next colonoscopy in November? Right now my symptoms are under control and I feel good, and I'm sticking with a low residue diet for now until further notice so that my colon can get all the healing help it can get. I really haven't had any significant blood or diarrhea since starting the meds. Just a tiny bit in the beginning and had an isolated incident of looser stool without blood but I think it might have been something I ate that I should't have... overall though I've had formed BM with no blood and sometimes just a bit of mucus. I know the meds totally helped, but I'm so worried that coming off of everything before getting on a maintenance med will have it coming back... any thoughts? Thanks!

Thanks DMC2011! The more I look into it, the more I wonder why my GI didn't mention pursuing maintenance meds earlier... Maybe she didn't realize I will be off all meds by next appt. I only started freaking out when I put everything in my calendar and saw the gap between my pred tapering end and next colonoscopy! I'm thinking I should put a call in to see what she says. I'm also worried that I might have a reaction to Lialda (or similar) and THAT could make symptoms worse if you don't tolerate it well so I'm a little afraid to rock the boat. I had tried to self medicate with metronidazole (Flagyl) before I went in to see GI doc first time, as I didn't know I had UC and that TORE me inside out, I think it totally made my flare worse. I took it for 5 days before I stopped. Last time I will ever try to self medicate. My GI gave me xifaxan for 3 days before my colonoscopy and it really helped and I tolerated it well but it was $30 a pill, my insurance wouldn't cover it for some reason. If anyone has had any luck with a gap in meds and not flaring back up, please let me know! Thanks!

Welcome to Healingwell!

Don't be afraid coming off the meds it certainly is scary. Just do it slow and not change your diet too much, that way you can see what is helping and what is not.

That's really, really strange that you weren't put on a mesalaine-based oral med following your c-scope. I don't think that the extent matters all that much when you're picking between them. Honestly, I'd call your doc, say that you've been doing some reading about treating UC, and that you don't feel comfortable AT ALL with not being on a mesalamine-based oral med at this point in time. If she refuses to give you an Rx, start shopping for a new GI right away.

That's a good question on if you should get worse would it be because of the Lialda or the prednisone tapering. The best way to figure that out would be to get on the Lialda ASAP and for a week or two keep the prednisone dose the same. This would extend your taper off of the prednisone to right about the same time you have your GI appointment. Few people actually have reactions to Lialda, although obviously some do. Others may take it and get no benefit, but not have any actual problems. The majority though would see improvement from the med. I would also say that if the mesalamine enema helped than more than likely you would not have a reaction to the Lialda, which is also mesalamine. If I were you Doc I would put you on the Lialda now, don't taper the pred for two weeks, and also do limited use of the rectal meds you have already done, even if just once or twice a week.

I didn't seem to have any reaction to the mesalamine enema or canasa. I did of course have really mushy stools mixed with all the meds when it came out, but it combined with the pred knocked the inflammation down pretty quicky and the blood all but started to disappear pretty quick. Once I got off the rectal meds, my stools became formed and only once a day to every other day in frequency. That's where I've been since stopping the rectal meds with the exception of a looser stool with some mucus the other day but I'm not sure if it's even UC related as my whole family had a little "bug" and my hubby and both kids had a bit of BM issues, but nothing serious... So it's unlikely that I will react to oral mesalamine... that's good... will have to put in a call to my GI when I get all my facts together and see what she says...

I'm with fruitgirl...I'm a huge fan of both oral mesalamine and the enemas...it's like a double whammy...oral for further up in the colon...enemas for the rectum and lower bit of colon (which can be the hardest to heal).  I tried oral only...it helped...but with the enemas too...bam...remission. 

Something you may need to learn now...with a disease like this...you are your own activist.  No one else will do it for you.  My GI...who I like very much...told me once...a disease like this is all over the board, everyone responds differently...you need to tell me how you are feeling and what you want to try.  It's pretty much been my call the whole time.  But I was also very well informed of the meds when I walked in there.  It sounds like YOU are taking the right steps, watching for yourself.  Now you need a GI who will work with you. 

Keep us posted, best of luck.

Just an update that I called my Dr. office today and will be picking up my prescription for Lialda this afternoon! (after I get my son from school). I'm not sure what dose is on the prescription yet, but the pills are 1.2g I believe? I'm just glad they had no problem starting me on it, and I feel better knowing that I will be getting on it asap. I definitely have to be proactive and my own advocate so I will continue to do my research and bring things up as needed. Thanks again to everyone for sharing your advice, experience and opinions!