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Symptoms coming on again - what to do?

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Ulcerative Colitis
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Posted 2/12/2017 5:01 PM (GMT 0)
Hi everyone! Some of you might remember that I was struggling with a stubborn flare since early September. Finally, in January, after taking two weeks off, I was better! I started eating normally again, gaining weight, going out with friends and being in a positive mindset. I had 1 bm per day, no blood, minor gas – 95% to normal, so close to remission! My GI even told me to come back and see him in three months. Unfortunately, this “high” was not long-lived. Last week I had some emotional stress and long hours at work. Sure enough, symptoms started to return. Annoying gas – the lingering in the rectum type; looser bms – loose at first, formed at the end; more fatigue; and anxiety associated with onset of symptoms. I tried to take it easy this weekend, eat a low fiber diet, rest a lot, but it doesn’t seem to help. If I go see my GI this week, I know he will prescribe hydrocort enemas. (I was supposed to start them two month ago, but never did because I was feeling better.) I’m thinking maybe I should try SCD diet, or start probiotics… I could also do some hydrocort suppositories…. Im also concerned about my mindset – when I start freaking out about colitis, symptoms only get worse. I would welcome any recommendations you might have regarding my recent deterioration in symptoms.
Posted 2/12/2017 5:21 PM (GMT 0)
Hi...so what meds are you on at this time, and what were you on when you were feeling good?

q
Posted 2/12/2017 5:25 PM (GMT 0)
Sorry to hear you're flaring again. Time for stronger medications like immunomodulators (imuran or 6mp)?
Posted 2/13/2017 12:37 AM (GMT 0)
flaring with Lialda and Rowasa is bad news.

you could try more Lialda

I see you already supplement with tumeric

given the close link to stress/anxiety and symptoms, you may have some benefit form anxiety meds

good luck
Posted 2/13/2017 12:39 AM (GMT 0)
Quincy, im on 2 Lialda and nightly Rowasa right now. I was taking the same thing when I was feeling good.
Posted 2/13/2017 12:51 AM (GMT 0)
1) you can up the lialda if you are on only 2 per day. Some folks with moderate UC do better on 4.8 G of mesalamine (max dose)

2) Given link with stress, do some mindfulness/relaxation audio every day or light exercise/yoga to manage stress. I try to do something daily every morning even when ill. There are links to the online resources.

3) Maybe find a way to have a less stressful job long-term or have more control of hours. I switched to being self-employed and even though I work full-time I can say no to some projects if I'm not feeling well or cancel some meetings. I used to travel and also have a very structured schedule at work but that was a no go! Plus, I sometimes start the day later now.

BTW, I also get "ptsd" and worry when I start to see the bleeding and other signs of a flare. That is normal.
Posted 2/13/2017 1:33 AM (GMT 0)
Yeah....I'd suggest adding the steroid enemas maybe during the day. A foam could be easier to hold . Curious when you see your GI what his suggestions are med wise. If you were on the rowasa nightly and flared after a stint of no sumptoms, it's definitely time to add something else to the mix.

q
Posted 2/13/2017 1:12 PM (GMT 0)
I have pancolitis and for me rectal meds do nothing. Of your inflammation is high the meds won't reach troublesome spots. I'm with ipoop. Maybe consider stronger meds? I'm in a happy place with remicade and imuran.
Posted 2/13/2017 2:40 PM (GMT 0)
To be honest, I am really afraid to move to the next level of medication. I am hoping that this can be settled with mesalamine...
Posted 2/13/2017 2:51 PM (GMT 0)
Certainly try the mesalamines at max doses but maintaining a stable remission on them is essential. If you cannot then immunomodulators or biologics are the next step.

What frightens you about the next level of medication? I have yet to experience a symptom from either 6MP or Remicade and I've been on them for three years now... i did find remission for the first time ever though smile
Posted 2/13/2017 4:02 PM (GMT 0)
I heard a lot of horror stories about the next level medication. My GI also says that most of his patients don't do well on 6pm or Imuran...
Posted 2/13/2017 4:24 PM (GMT 0)
For me flares where horrifying so I was up to try anything. You can always quit a drug and try something new. "Most" seems like an overestimation to me, but I only have my personal experience to go by.

If you are unwilling to go to next level of medications, SCD sounds like your best route. Many here have found remission with it. It wasn't my personal choice as I enjoy food and my belly doesn't agree with veggies and fiber at all.
Posted 2/13/2017 4:33 PM (GMT 0)

Katerina-b said...
I heard a lot of horror stories about the next level medication. My GI also says that most of his patients don't do well on 6pm or Imuran...

There's horror stories for everything, we had a poster a few weeks back who had liver damage due to mesalamine. The key bit is what is the actual risk versus benefits for these medications? As often those things we fear most have very small odds. I found that to be very helpful when deciding myself. The Crohn's and Colitis Foundation of America has some good resources on this:
Webcast: programs.rmei.com/CCFA139VL/presentation/player.html
Transcript: http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf

Admin summary: There's very small odds (less than 1 percent) of serious side effects and about 70 percent odds of these medications improving your UC symptoms.
Posted 2/13/2017 4:41 PM (GMT 0)
Get on the steroid enemas as well. Start there.

q
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