I'm no expert my any means, but I think when you're first diagnosed, much depends on how you're disease is clinically classified (mild, moderate, severe) and where it's located. And then when your meds stop working, they usually recommend moving to a different class of drug, not so much because the flare is super bad vs just average bad, but because the same class is likely no longer going to work.

So for instance, for me, I started on Colazal (Balsalazide) which stopped working for me after about 5 years. My doc thought Aziothioprine (immunosuppressent) would work well for me but I was a little hesitant so he said if I wanted to, I could try Lialda (mesalamine) but he didn't think it would do anything for me, probably because they were in the same class. He was right. It did nothing for me so I did start Aziathioprine, and it put me into a remission within a few months of starting it. I've been on it since 2008 / 2009 and have had no issues with the medication.

But what to take still may depend on where your UC is located. So for me, I have pan colitis which is inflammation throughout the colon, but some people have colitis limited just to their rectum so that may call for a different kind of treatment.

I say get all this stuff down to ask your doc and go to the CCFA website. They have pretty good info on treatment and the disease in general. I ask my GI tons of questions and he's great about involving me in my care. The GI I had before him was a turd (no pun intended) so I get that not all GIs are created the same.

Immunosuppressants are usually given to wean the patient off steroids, but they also carry significant side effects. The last line of meds are biologics such as Humira. I hope you can find the right mix to achieve and maintain remission.

Rmb makes a good point regarding location. Enemas or suppositories may work in the rectum and sigmoid colon, but they're ineffective farther up the colon. Many of us begin with proctitis that then spreads northward.

rmb - That was very helpful. I would want to switch to a different class of drugs from what I am taking now. Did you have any side effects with Aziathioprine? I was told that my colitis is mainly in my lower colon and rectum when I was first diagnosed in '98. When I had my last colonoscopy in 2012, it was in remission and little evidence of disease. That's what makes it so weird right now. If it went further up my colon, how would I know. Maybe I should also try the steroidal enemas/suppositories. Can you tell I am overwhelmed? I came to work today and had 2 accidents. I am wearing Depends but I am very upset and anxious today. I don't need this right now - or every for that matter! None of us do. One day at a time...

I suspect your GI will likely order a colonoscopy so that's how you'll know the extent of the inflammation. That's what mine does when I start to flare up. I'll come in for a visit, he'll examine me and we'll go over my symptoms, how long, etc. Then he'll order some lab work (to check blood counts and inflammation markers) and then between the lab results and based on my symptoms, determine if a colonoscopy is necessary to literally see what's going on.

I would just try to take it easy and not worry so much about the meds at this point. Your doc will sort it all out with you. Feeling anxious is not uncommon. You'll be ok.

Oh, and to answer your question about whether I had any side effects from aziothioprine, not anything serious. I have my liver functions tested regularly because it can cause liver problems for some people. The only side effects I experienced was kind of a constant low grade sinus type headache for the first month or so I was in it. But otherwise no problems. I do have liver function tests regularly because for some people it can mess with the liver, and I keep watch for skin changes because it can increase the risk of skin growths/cancer and I spend a lot of time outside and already have a lot of moles and stuff, but otherwise, I've done really well on azathioprine. So there are some potential funky side effects but most people don't experience them.

strongbel, my UC started similar to yours ( diag early'91) . It was horrible as far as the sigmoid scope reached, but that was the extent. It then spread into the descending colon ( left-sided UC) . If topical treatments are no longer effective, it may be due to disease progression.

I had a nasty allergic reaction to azathioprine, but it was a rare side effect.

the sulfa drugs help me with the bleeding, but am told to stay on fulltime.
In addition to meds, you can tk the bull by the horn, and evaluate your diet. Even though they say diet doesn't create your UC, it can help a lot to keep in under better control. You may be reacting to foods you don't even realize, because it may seem that everything you eat triggers you. It's a lot of work though to start from scratch, but I did it, and hv never had better sucess. You may be mildly allergic to foods and not even know it. You may have intollerences such as dairy. It doesn't hurt to get allergy testing done. I was suprized to find out not only was I intollerent, but actually have low grade allergies to certain foods. I do much better when I avoid those foods, it only makes sense that those foods would be triggering an immune response.

I'm 31 (female), have had UC since 18. Big bad flare when I was 25 and been on Remicade since then. It was a miracle worker. Literally saved my life.

I had tired everything before that- asacol (what a joke), every form or mesalamine you could think of, pred obviously- lots of it- in high doeses- for long periods of time. Azothioprine was AWFUL. I'm completely convinced it gave me inflammatory arthritis, which started right after I started taking it (ironically, Remicade treats that too).

Anyway, it looks like my 6 year dependence on Remicade os starting to come to an end. My symptoms have slowly but steadily been coming back, likely brought on by stress initially, but continuing to worsen. I'm having some "antibody" test next week before my infusion.

All of that to say... You gotta just do what's best for you. All the meds suck, real bad. Most have side effects, but you have to choose the lesser of the evils. I had a pretty good run with Remiciade. Best of luck to you! Hope you feel better and find something to help!

Oh p.s. I also spent an enormous amount of time, energy, and money experimenting with diets (paelo, SCD, etc)... It may work, but it has to be followed SO strictly that it's just so unrealistic and miserable...

Best- E

Thought I would post an update since I originally posted on this topic. I feel for everyone on this site. My last flare was absolutely horrible and took a while to get under control. The 2nd course of prednisone finally helped, but I started to get some bad symptoms from it. I can see why people don't like taking prednisone, but it was the only thing that helped me. I am currently not having a flare (hate to even jinx myself) and have a GI follow up next week. I am taking Delzicol and a probiotic. I don't think Delzicol is effective enough since I had a horrible flare while I was on it in November. I wonder if I should suggest that I change maintenance drugs to a different class of drugs. She may not want to change it since I'm not flaring now. This is such a hard disease to cope with. I have been carrying Depends and wipes in my purse for almost 4 months now after having too many accidents everywhere. It really affects your life in a bad way. I hope I can stay well for a long time. Fingers crossed. I wish everyone here health and peace and long periods of remission. Thanks for all of the support. People on the outside would never understand.

Glad to hear you're feeling better at the moment. I would ask your doc if she thinks another maintenance med would better for you in the long run. If she doesn't think so, don't feel funny about asking why. I think the more questions you ask, the more you learn about your version of the disease, and why your doc recommends something or why she chooses a certain protocol makes, us feel more in a partnership with our doctors and helps us cope better with having the disease.

Keep fighting the fight!

I had a follow up GI appt, and she wants me to continue to stay on Delzicol - 2 400mg tabs 3x a day. I went to pick up the script, and it was $1400! I haven't met my high deductible yet. I was only able to get a week's worth, which was $113, but I need to call the doc to ask if there is another type of drug in the same class but a little cheaper. This is nuts. I guess if it has to do with my health, I have to find a way to pay for it. I don't want to go through what I went through in my relapse and suffer horribly with a flare. this really sucks!

I don't know if you're eligible for this discount program. Your pharmacist can run it through to see if you are:


https://www.delzicol.com/resources/savings-card/

RMB - I signed up for the card and will take it to my pharmacy to see what I can quality for. thanks for the info!

Strongbel, I am from Williamson, NY, what a small world this is.. :-) Just wanted to say that i've tried Azathioprine and experienced liver toxicity from it. My body could not metabolize it efficiently. unfortunately it took a couple of weeks and ME looking through my blood work to figure it out. Sadly the primary care doc I had in the navy was not very good but once I contacted my GI with the blood work he took me off the Imuran immediately. I knew something was wrong because i had nausea that even the meds they give chemo patients for nausea wasn't touching it. Turns out it wasn't actually nausea, it was my liver screaming at me. I don't know how many people experience liver toxicity but i did. Also, I know these meds can be really expensive too so I hope the discount program rmb gave you works out and I hope you continue to feel good! thoughts, prayers and positive vibes being sent to you!!