Meds not working

Hi, I'm new to this site. I was diagnosed with Proctitis in January 2012 after a Colonoscopy. This progressed to Ulcerative Colitis in August 2012 and boy did I know it! I never want to experience that pain ever again. I was put on prednisolone and later Pentasa 4g or day. I reduced to 2g a day for a year or so but I soon ended up back on 4g. Everything was calm until February this year when bleeding and mucus started to increase, so I was started taking Pentasa Suppositories too which calmed things down. Then in June the suppositories stopped working so I had a short course of prednisolone. Also I noticed the steroids gave me hot sweats which I've never experienced before. A few weeks after finishing the steroids, I've had the worst flare since 2012. The bleeding has increased big time and I've had that god awful pain back too. I'm now back on steroids and waiting to see my consultant at the end if September. Has anyone else experienced this or similar? I'm worried that my meds don't work anymore and whether they can give me different ones to try. I'm getting a but paranoid now thinking this is it and surgery is now my only option! If that's the case then I would have a stoma because my inflammation is right where the sphincter muscle is. Any advice please from a fellow sufferer. I hate this disease with a passion

We all hate this disease!

I know how worried one can get about it, too. I'm a fellow worrier at times!

It sounds like you're definitely in a bad flare, but please don't think that it's the "end" for you or your colon. I've had UC for 20+ years and over the course of that time have had many flares, some huge and some very minor.

If you're not ready for surgery now, you have no reason to jump to that conclusion. It sounds like you haven't tried many drugs for UC, and for many of us it takes a lot of time and experimentation to find the right ones. Sometimes the right blend of meds shifts over time, too -- it's not a simple condition unfortunately!

Have the recent steroids helped to reduce your flare? If so, try to stay positive and be sure to ask your doc about the plan to keep you in remission once you taper off steroids (you may want to add in something like Imuran). If the steroids aren't helping within 1-2 weeks, I would try to get in touch with your GI sooner rather than later to see if something like Remicade might lead you to a better and more complete response.

Best of luck battling this flare up. Sounds like you're at the low point now; I'm confident and hopeful that things will be looking rosier soon!

Thank you RocketMan12. Steroids have helped a bit but not stemmed the bleeding which is unusual because they normally do. It's a relief to know that there are other drugs to try. I suppose your body gets used to meds so they can stop working effectively.

Welcome to the forum. UC is disease characterized by periods of flares and of remission, and the goal of treatment is to get each patient into sustained, long term remissions lasting 2,3,5,8 or more years between flares. The first 5 years can be the most difficult as that's most likely when UC will spread in extent and severity, if it's going to. During that time, it is important to adjust your medications and dosages to keep pace with your UC progression, if you are one of those people who's UC does initially progress.

"A med stops working?" Technically they do not stop working, but each medication has a maximum effectiveness. Once our UC gets more severe than what that medication is capable of handling, then we flare. It's easy to say "my medication stopped working" and then connect it with "I should stop taking it", which is a really bad idea, as the medication still has an effect but you just need additional medications to control your UC symptoms and have a good quality of life.

"Surgery is immenent." No, not really if all you have been on is the anti-inflammatory mesalamines. The first class of UC medications is anti-inflammatory mesalamines. The second class of medications is immunomodulators (imuran/aza or 6mp). The third class of medications is biologics (humira/remicade, entyvio, etc.). No surgeon would agree on a UC surgery unless you've tried at least one of all three classes of UC medications.

It's time to get aggressive in treating your UC, if you do not feel your condition is stable and if you haven't sustained a longterm remission. Ask about the 2nd and 3rd classes of UC medications. If it isn't working then add to your existing medications to find a combination of treatments that do work. It's very individual with UC, no two solutions are exactly the same. And there's tons of trial-and-error in finding your solution. Hang in there, and advocate for changing your treatment if what you're doing isn't working.