Am I in a “forever flare”?

Hi everyone! So this is my situation. I was diagnosed with ulcerative proctitis on September 2016. Since then, I’ve been taking salofalk (mesalazine) suppositories once per day. I have to confess that I’m not constant with my meds and sometimes I forget about taking them
I became lactose intolerant and I also avoid eating nuts, soda, too much fiber, and basically the things I recognize that make me feel bad.
I try to visit my gastroenterologist once a month and I had my last colonoscopy on January 2018 after a 6 month trip in Europe (Erasmus) and everything was fine (although I drunk beer more than I should and I was worried about it because my doc told me to avoid it hahaha).

The thing is that since I was diagnosed there is no day I’ve stopped bleeding. Sometimes it can be too little blood but most of the days it is a lot and it usually is deep red. Also I always have mucus and gases.

I’ve had two severe episodes of anemia. The first one was by the time I was diagnosed: my hemoglobin level was 7.6 (normal = 12) and the second one was last year with 10 of hemoglobin level. In both cases I had iron injections (total: 10 injections per episode)

I’ve been a member of this blog since I was diagnosed and I’ve read that most of you that are on remission do not have any symptoms or blood... and since I’m always bleeding I’m very worried about it. I’ve made an appointment with a new doctor the next week to have a different point of view but before it I want you to tell me if this or something similar have happened to you.

Thanks!

Post Edited (Camilaguts) : 3/4/2019 9:39:45 PM (GMT-7)

You are under-treating your UC, and flaring as a consequence thereof. You likely need stronger medications beyond just salofalk (mesalazine) suppositories to achieve a remission.

Darker red is suggestive of inflammation higher than the rectum. Your suppository is only treating your rectum. I would suggest you have endoscopy (that is a colonoscopy or at least a flexible-sigmoidoscopy) to see exactly what is going on (or at least another test for inflammation levels like a FCP stool test or CRP blood test). You likely need rowasa-retention enema which treats the whole left side of your large intestine. You likely also need an oral mesalamine (asacol, pentasa, salofalk oral tablets) which treats the whole large intestine.

Certainly, we have the best results when we are compliant with our medications. You're making your journey with UC harder, by being noncompliant and missing dosages. I know that taking meds is a figurative and at times a literal pain in the butt. However, it is important that we take our meds religiously. Make it a part of your daily routine, do it exactly at the same time, in the same order daily. For example, I take my meds right before brushing my teeth. It's very rare that I leave the house without pants, and/or without brushing my teeth lol. So, if it's part of your routine you are good about making sure it is done daily.

Do you have the biopsies pathology report?
What are your bms like, and other rectal symptoms?

One has to dissect the meaning of everything is fine. It's a term I take quite loosely based on experience.

You don't sound fine, and you need another appointment with your doctor and request full coverage treatment.You're undertreated.

At the very least and one step up from now, request mesalamine enemas, oral mesalamine and use the suppositories as supportive during the day. See if you improve.

Just to add, you could have hemmies or a fissure..

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