UC newbie, Uceris isn't working & struggling to cope

Hi all,

I've checked out this forum on and off for a while, but finally realized I could probably use the support of others who understand what I'm going through. I was diagnosed with a mild case of proctitis at the end of 2012. I didn't realize it then, but the first year was great. I didn't have any frequency/urgency issues, just some bleeding and the occasional stomache ache. I took Lialda and Rowasa and was able to taper down to just 2.4g Lialda with no issues. I thought my doctor was just making a big deal of nothing.

But since the end of last year I've been mostly miserable. The bleeding returned and the Lialda and Rowasa seemed to stop working. And I finally understood what people were talking about with frequency/urgency. Then I went through a bout of flares that were the most painful thing I've ever experienced. I still have no idea how the pain could be so bad.

Eventually, I went to my doctor and she did a bunch of tests and a colonoscopy. The good news was that it seemed like I was almost in remission. I was feeling much better and my inflammation was very low and only in a tiny area. She put me on Uceris in addition to Lialda and said she felt confident this would nip things in the bud.

I'm almost done with my Uceris and it hasn't done a thing. I noticed some bleeding a few weeks ago and now I'm full on into one of these horrible, painful flares. I can't eat, haven't been able to work at all, and basically lay in bed suffering through it.

I'm seeing my doctor tomorrow and afraid she'll start me on Biologics. But it seems crazy to me to be put on them for a case of UC that has always seemed to be considered very mild. Has anyone else had any of these experiences? I'm trying to stay positive, but it can be hard. Any words of wisdom would be greatly appreciated.

Hi and sorry to hear your having such a rough time!! it does sound like you need to try something new, I just wanted to say hang in there, and let us know how you get on tomorrow...kind regards.

Thanks, all. It's nice to hear from people who understand.

In the beginning I was on Rowasa continually, until I had successfully tapered down to 2.4g of Lialda. Then I tapered off the Rowasa.

I met with my doctor yesterday and it basically went as expected. I have to do a lot of labs to test various things and make sure I don't have an infection. She really didn't like that I had this flare while on Uceris, and reluctantly gave me a prescription for Pred (she really hates to use it since it's so awful). She also said it was worth a try to go back on Rowasa, so I'm going to do that as well.

She would like for me to start on Simponi, but I told her about my reservations about moving to the next tier of medication for a mild case of UC. I also made a face when she mentioned injections, so she told me I could come into the office and she'd do it for me, ha.

I am feeling a lot better today (though things are definitely not 'normal'). I got ahold of a juicer and for 2 days had nothing but carrot apple juice. That seemed to help the pains to go away. Then, oddly enough, I have been eating small portions of pita bread with hummus and tzatziki and it seems to be ok. I'm wondering if I keep up the juicing/light eating for a month if it will make a difference?

Now I'm trying to catch up on work. It's very frustrating to have UC and work in a field that is very demanding/unforgiving with workloads and deadlines. Every time I have a flare I wonder if it's too late to switch professions...

Maybe completely off topic, but biologics literally saved my life. I have been on Humira since October 2013- and thus far (hopefully I don't jinx myself) I have had really good luck. Zero side effects- not even a sniffle! I was terrified at first, then I was obsessive about cleanliness...I would try not to breathe when there were people hacking and coughing around me, I washed door knobs and every where with antibacterial wipes- once I realized I was a psycho, I calmed down and live pretty much a completely normal life.
I'm almost 30, I work a full time job, part find job, I'm working on my masters as a nurse practitioner, jet ski nearly every weekend in the ocean where there are no bathrooms, and while I choose to eat healthy, I can basically eat whatever I want right now with out issue- unless I do sugar in excess and if I eat salad more than 3-4 Times a week I get cramps.
I guess all I'm saying is don't completely rule them
Out- they aren't the end of the world, and may actually do a lot of good got you if these other attempts don't get things under control.

Thanks for all of the ideas. I just filled a prescription for Rowasa, but I'll talk to my doctor about Canasa when I see her again in a week or so.

I have a feeling at some point I will wind up on Biologics, but I'd prefer to stay on Mesalamine for as long as I can.

To be honest, I don't know much about Biologics and the side effects, but having to get vaccines to take the medication freaks me out. Since college it seems my immune system has taken a nose dive and I'm sick all the time. A simple cold can keep me home in bed for days, and I've had employers, professors, etc. who didn't seem to get how it could affect me so much.

I'm going to continue juicing and eating light for a while, I'm feeling so much better and it seems all my symptoms are improving. However, I live in NYC and went out yesterday and there are temptations everywhere!

Hi I also have suffered from proctitis. My personal opinion is to try everything rectally and less severe before trying biologics. Also really watch your diet. Avoid all artificial sweeteners and MSG. Maybe get tested for gluten intolerance. Good luck.

Since you have proctosigmoiditis I'm wondering why your gastro would Rx Pred at this point instead of hydrocortisone retention enemas. Those contain 50% less steroid than Pred so most patients can use them nightly for a couple months w/o major side effects. They got me out of severe left-sided UC flares in the early yrs after my 1980 DX, when we IBDers had only a few Rx med options. I don't think you need to rush to biologics, besides Simponi is extremely expensive-- from what other members have posted here about its cost recently. You would likely need to inquire 1st as to whether your insurance covers it so I think your MD is wrong to push that particular med at you right now. Is this doc a researcher, too? If so, be aware that they like to nab patients for clinical trials. RE diet: it's always a good idea to eat low-residue foods when flaring with multiple bms daily-- then gradually add more variety back to your menu. / Old Hat (33 yrs with left-sided UC; presently in remission taking brandname Colazal)

Just wanted to share my two cents. I was seeing an awful doctor who was very unhelpful, so I recently changed to the John Hopkins IBD program. My new doctor there told me he has had very limited success treating patients with Uceris, so I'm sure you are not alone. I hope you feel better soon!

Maybe your doc reads this forum? (LOL) We gave you better advice than she did on your last visit. Take care & best wishes for continuing improvement of your flare. Colazal is also an option for you in the choice of oral 5-ASA meds, & may actually be more helpful than Lialda though the standard daily dose = 9 capsules. (Generic name is balsalazide disodium.) It is designed to break down to mesalamine within the colon so that more of the active ingredient reaches the left-side section-- descending, sigmoid, rectum. / Old Hat (33 yrs with left-sided UC; presently in remission taking brandname Colazal)

parallelograms,

How about trying LDN, low dose naltrexone?

Check out the last post on the UC Resources page, all the info on LDN is there.
Let me know if you have any questions.

Thanks for all of these ideas everyone! I'm feeling more confident that I can get into remission without biologics now. I'll probably have to bite the bullet and start them someday, but I am hoping that's a ways down the line!

I'm feeling good today, and symptoms have disappeared completely. I got so used to going to the bathroom all the time that I was confused when I didn't have to!

Have been juicing for about 2 weeks now. Can't say I'm seeing miracles from it, but it seems to help with my energy levels when I don't feel well. I also used to get intense food cravings and those have went away completely. I haven't done a food diary because I've tried it in the past and found it hard to keep up with, but I'm making sure to keep close tabs on everything I eat. So far I've learned that my beloved morning coffee is a no go. I started eating a lot more protein the last few days, including chicken, (I've been a vegetarian for the vast majority of my life!) to see if that helps me gain some of the weight/muscle I've lost.

Fingers crossed!

Precious precious coffee! How I miss it. I have been sometimes having a product called Teacchino as a substitute. It is made from carob and a few other things. It's caffeine free and much easier on the stomach and tastes almost identical to coffee. And sometimes I sneak a tiny bit of coffee into in for some caffeine...shh.