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Lingering symptoms, it is this the new normal?

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Ulcerative Colitis
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Posted 10/13/2018 3:11 PM (GMT 0)
This place has always been a great sounding board for me and I’ve always gotten great advice. I felt best on prednisone as expected. I’ve been on humira a little under 3 months and am on my fourth week of uceris. I do rowasa nightly too and the other meds in my signature.

Based on everyone else’s experience- does the weird cramping/bubbling ever go away? Do you all still get cramping and urgency? My humira levels are good and so are my labs. Last scope over the summer was not bad, but I was on a high dose of prednisone and did feel good at the time.

Does the urgency just take a long time to heal? And do people in remission still have mucous on and off? I can’t really remember, but I feel like before I was diagnosed and felt good I had mucous and other weird stuff, but maybe I had colitis back then and just hadn’t been diagnosed.

And has anyone ever been diagnosed with SIBO? I read an article that people with IBD with lingering symptoms may have may or IBS. I don’t think I have IBS though.
Posted 10/13/2018 8:49 PM (GMT 0)
I don't think what you're dealing with is "normal" considering the treatment you're on... your symptoms should be more managed. If your scope was while on prednisone, the result is not very useful. I think i'd have stool tests, including a calprotectin and see what the result shows. If it's good, then I might toward the path of thinking IBS or SIBO (though the FCP isn't as reliable as a scope...), if it's high, it's inflammatory and I'd likely want to have a look.

Not everyone with UC responds to humira - i'd imagine the result rate is about 50%. There are a lot of other options. Have you tried steroid enemas?

When I was in remission, I was 100% free of symptoms. Some people consider it remission when symptoms are livable, but i only consider it remission when you're completely free of symptoms. People are willing to tolerate different levels of impact on their lives... I always considered urgency to be something that was intolerable.
Posted 10/15/2018 12:49 PM (GMT 0)
No, it is not the new normal. Healing can be an incredibly slow process. Took about a year to attain a remission with remicade. Slow, steady month-to-month improvements, so it's possible with more time you might achieve it too. I am cramp free, urgency-free, etc etc. Essentially, I am normal like pre-UC when in a remission. And a remission is what we all should shoot for!

Give us a rundown of your UC symptoms: total bms a day?, are they formed?, how bad is the urgency (hold it only seconds, a minute or two, hold it about ~15-minutes, etc)?, passing any blood during bms?

I believe there is a SIBO breath test you can get. You can always get a stool test for C Diff, if you have lingering symptoms (it can creep up on any of us, we're more prone to it, and the symptoms mirror UC symptoms)
Posted 10/15/2018 6:16 PM (GMT 0)
Total BMs a day- average 3-4, but anywhere from 2-6. Urgency- sometimes I can wait 2-10 min depending on the day. Rarely do I have a normal stool. Not usually straight diarrhea but pretty close to it. Just weird skinny gross stools with some mucous usually.

I had some Cortenemas left, so I’m going to do those during the day and rowasa at night for a few weeks and see if that helps.

I got checked for c diff 2 weeks ago as well as a stool culture and those were negative.

I do occasionally have blood, it’s usually bright red and not a lot, but I’m pretty sure it’s from a chronic fissure I have when it acts up.

Thanks for all the input- I think I need to give humira some more time. I would like to do a scope when I’m not on prednisone though.
Posted 10/15/2018 6:24 PM (GMT 0)
Sounds like mild inflammation remaining, based on frequency, skinny stools, and the ability to hold it some. Treat mild symptoms with mild treatments. Try the cortenemas and see how well you respond. You can consider more mesalamine, I've done two rowasa per day.

Have you ever had humira-levels and humira-antiobodies tested? Has more frequent humira injections been mentioned?
Posted 10/15/2018 8:54 PM (GMT 0)
Request a fecal calprotectin. it's a stool test that checks for inflammation. The normal range is usually considered under 50, but as it gets higher, more inflammation is typically present. if you do that test and it's high, you should consider getting scoped. Since your humira levels are good, changing that to more frequent or higher dosing isn't likely to help, but there are other meds. You could try doubling up on rectals or increasing your oral mesalamine to the max. Uceris is also helpful but if you're going to get scoped it's better to do so when you're not on steroids.
Posted 10/16/2018 6:25 PM (GMT 0)
I think my oral mesalamine is maxed out. I’m wishing I had chosen remicade, seems like people have a better response. I’ll do the cal protectin. I think I’ll also move up my appointment for my follow up. I just hit the 3 month mark with humira, so maybe I’m just a slow responder? I’m also going to do rowasa every night, cortenema during the during, and consider Canasa during the day too.

My expectation and what was told to me was humira would work by 3 months, and I thought I would feel normal and be in remission. It is helping, in that I’m on uceris which didn’t help prior to humira and got off prednisone. I guess I just have to be patient too. At what point would changing to another biologic be considered?
Posted 10/16/2018 6:46 PM (GMT 0)
How long you wait depends if there is any sign of continual improvement or not. Are you getting week-to-week or at least month-to-month improvements with humira? If you've plateaued for a month or months, then it is time to shake things up a bit (adjust doses, add new meds, or change the meds you're on). I did get slow and steady improvements on remi. Would you consider more endoscopy after a couple months to assess whether there is any improvement since starting Humira (like a flexible-sigmoidoscopy or colonoscopy)?

Have you tried immunomodulators: imuran/azathioprine/6mp? Sometimes you just need another med simultaneously to achieve a remission.

The reality is only about 65% of people respond to a given biologic. There's only anecdotal evidence of remicade being any better than humira or simponi (nothing significant beyond the margin of error within studies). So, I wouldn't anticipate your response being any better from one rather than the other. If you fail humira, then look for another class of biologics entirely: entyvio, xeljanz, or stelara are all distinctly different classes from each other and from humira.
Posted 10/16/2018 6:56 PM (GMT 0)
There is more than one marker that measures inflammation. My GI likes to focus on the Sed Rate of my blood. You are looking for a downward trajectory in these numbers, it doesn't happen all at once.

I second adding an immuno-modulator like 6-mp or Imuran. It's at least good to discuss with your GI.

I was on 40mgs of Humira every week and it didn't work for me but that was after I had been on Remicade for years.

SIBO is an easy test. Bloating and a lot of gas are good signs that you should be tested for it.
Posted 10/18/2018 4:44 PM (GMT 0)
I would definitely do another scope if possible. I do feel I’m getting better month to month, just very slowly. In the past it didn’t take this long. I’m much much better off than I was back in may. I guess the healing just takes time. I will ask about a sed rate. I am going to move up my appointment to November. Everything I read about humira said it takes up to 3 months for results, so I took that as by 3 months I would reach remission.

I will ask about 6mp or imuran. However my doctor doesn’t like to prescribe that to women of child bearing age. However I’m not going to have kids at this point for at least a few years. Thanks so much for all the info!
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