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Long simmering flare - struggling with next steps

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Ulcerative Colitis
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Posted 3/8/2018 9:07 PM (GMT 0)
Hi all! I am getting really desperate with my recent flare and not sure what to do anymore. I had a major flare a year and a half ago, but it was soon put under control with pred and oral and rectal mesalamine. However, that didn’t put me into remission, as I’ve been having a simmering flare ever since. Sometimes I have good days, sometimes I experience mini flares which go away after some time. After one of those mini flares in September 2017 I’ve been put on hydrocortisone suppositories. I’ve been using them ever since – for past three month I’ve been doing them every fourth day (once a week basically). Unfortunately, at this point it looks to me like things are turning for the worst. I had a cold two weeks ago, experienced unstable sleep patterns and missed one dose of the hydrocortisone suppository. Sure enough for past few days I’ve been noticing loose bm with mucus and traces of blood.

I visited my GI yesterday and he doesn’t seem to be taking me seriously. He said to just keep doing what Im doing and hope for the best. He also said that he is a little concerned with the prolonged use of the hydrocort suppositories, but at this point it is a lesser evil out of other options that are out there. Also, he gave me an option to use hydrocort enemas for few days whenever I think is needed. In addition to the GI I am seeing a naturopath who has me taking a lot of supplements. They seemed to help at first but now are not doing much. I am really frustrated by the situation as I am basically waiting to get really sick for someone to take me seriously. My GI brought up immunosuppressants yesterday, but said that he thinks I am not yet there. To be honest I am super scared to take that step and don’t want to go there until I absolutely have to.

Right now my symptoms are one bm per day, sometimes soft and formed, sometimes loose, with occasional traces of blood and mucus, some abdominal discomfort after eaiting. My medications include 2.4 g of lialda, nightly rowasa, morning canasa, hydrocort. suppository every fourth day, many supplements.

I would appreciate any advice or input regarding my situation, as I really am struggling with the next steps.
Posted 3/8/2018 10:30 PM (GMT 0)
For the longest time I had a lot of success with predfoam enemas. You can take 1g or 2g every day - I took 2g nightly. I took them for prolonged periods of time as my GI said that since it's a topical steroid the absorption and therefore side effects are much less than an oral steroid. I'm afraid that's my only suggestion - see if you could switch or up the frequency of the topical steroid perhaps.
Other than that I'm not sure as I did then go on to have success with azathioprine for several years. I definitely do understand your reluctance to take them, I felt that too, but ultimately when I did end up taking azathioprine I'd exhausted all other options so felt ok with that decision. Same with humira - I was extremely reluctant so I do understand you not wanting to go that way unless you have no other options. I know many many people do have success with immunosuppressants though, if you do take that step next but good luck for the current situation. An ongoing mildish flare can be distressing , I think , as it's frustrating in wanting the symptoms to go when you're so close to being ok!!
Posted 3/8/2018 10:39 PM (GMT 0)
for one month, up your lialda to 4.8 g/day and stop all supplements/vitamins unless you know for a fact they are helping -


what is your current diet like ? are you getting proper nutrition ? sleep ? hydration ?
Posted 3/8/2018 10:50 PM (GMT 0)
My current diet is basically chicken, beef, rice, potatoes and bread. I do take a multivitamin thought, so that helps with nutrients i hope... I sleep around 6 hours every day. As for hydration, three cups of tea per day.
Posted 3/9/2018 1:14 AM (GMT 0)
Hi,
I just want to comment about the Anucort-hc. I also take them about every 4 days and it just seems to be what I need to stay well. I am also concerned about long term use, but my GI seems to be okay with it. I also take nightly Rowasa and have been for years. I mostly remain at a simmer--however when thing start to ramp up--I up the Anucort/and or use some Cortifoam for a bit til it calms down. I don't know if that would work for you. Hope things settle down soon.
B
Posted 3/9/2018 1:58 PM (GMT 0)

Katerina-b said...
After one of those mini flares in September 2017 I’ve been put on hydrocortisone suppositories. I’ve been using them ever since – for past three month I’ve been doing them every fourth day (once a week basically). He also said that he is a little concerned with the prolonged use of the hydrocort suppositories, but at this point it is a lesser evil out of other options that are out there.

My GI brought up immunosuppressants yesterday, but said that he thinks I am not yet there. To be honest I am super scared to take that step and don’t want to go there until I absolutely have to.

If you cannot get off the steroids then I would definitely go for the immunosuppressents. You've been struggling, and nothing is working. And that's when I would say let's go up a class of UC medications and get rid of the steroids.

I've been on 6MP since 2012 and have yet to experience a side effect on them. Everyone is a little scared when considering going on them, myself included. In the end the benefits far outweigh the risks. You're talking very small odds of side effects.
Posted 3/9/2018 8:45 PM (GMT 0)
My GI said that there is only 50% chance that Imuran would work... this is very discouraging and seems so be a huge risk for odds that are so small.
Posted 3/9/2018 8:57 PM (GMT 0)
What's the huge risk? 70% of people respond to immunomodulators from scientific studies I've read...

Here's a good risks versus benefits watch/read from the Crohn's and Colitis Foundation of America with lots of good odds and statistics of side effects:
Webcast: programs.rmei.com/CCFA139VL/presentation/player.html
Transcript: http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf

If it's not your time to go on them, then that is fine. However, I certainly wouldn't be scared of immunomodulators. Yet another treatment that might give you your quality of life back, and a remission.
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