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Ulcerative Colitis
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Posted 6/15/2015 5:25 PM (GMT 0)
Hey guys,

My current flair is lasting pretty much the whole year and I am starting to become very exhausted mentally and physically.

I am currently on the full dose of Asascol HD. In the last few weeks, i have been using Canasa but really have not see any positive or negative effects yet. Not sure how long you are supposed to take it or when it starts working good.

I get a few hours of sleep every night (2-4 hours) but I always wake up at 3am, 4am, 5am, 6am like clock work running to the bathroom. If i sleep on my sides , i have to run to bathroom ASAP. Its brutal cause I wake my wife up a lot.

So, in the morning i am so tired , i drink a coffee. I wanted to ask what do you think is the least harmful for my gut, 1 cup of coffee, a can of coke or a glass of sweet tea (southern). Cause of my fatigue, I really can't not have something cause of work so I was wondering how do you guys rank these drinks in regards to gut issues.

Also, I have been eating some bananas and bake potatoes lately. Stuff that is pretty bland and mild. Is there anything else besides these two that I should try. Any go-to foods for you? I don't really have an appetite to eat much cause its either too bland or just too much stomach pain.

Anyways, I just had a colonoscopy a few months ago and they said it looked great but i was in pain soon afterwards. I think its the bottom where the inflammation is. Anyways, any suggestion on caffeine, food, sleep ideas, would be appreciated.

Thanks and hope for better days for all of us. :}
Posted 6/15/2015 6:27 PM (GMT 0)
You are taking entry-level medication that is not working to contain what sounds to me like a bad flare.

Caffeine will encourage your bowels to move. If that's not what you want, cut it out. I personally use it in the mornings to get things moving.

I would tell even a healthy person to avoid Coke.

I have had success with using Valerian Root to help me sleep.

When you're flaring its near-impossible to know what is harming you and what isn't, because everything is such a mess. If I were you I would talk to your doctor about moving up the medication ladder to get your flare under control.
Posted 6/15/2015 6:31 PM (GMT 0)
i agree with everything you said. Is there anything above asacol and canasa on drug ladder that you guys recommend but below remicade?

Post Edited (cucubbie) : 6/15/2015 12:36:50 PM (GMT-6)

Posted 6/15/2015 6:32 PM (GMT 0)
I agree with ki-wi on his suggestions. But what do you mean by the colonoscopy looked good. Good as in little inflammation or good as in minor inflammation? Because thats an important distinction when planning your treatment and learning about the cause of the symptoms.
Posted 6/15/2015 6:36 PM (GMT 0)
the scope showed some inflammation but not a lot.
Posted 6/15/2015 6:48 PM (GMT 0)
Oral prednisone and/or one of the immunomodulators (immuran/azathioprine or 6-mercaptopurine) are the next step. And if your inflammation is limited to your rectum (proctitis) then you can probably benefit a lot from rectal steroids instead of these two other med classes.
Posted 6/15/2015 6:50 PM (GMT 0)
I just got off a month of predniscone and it didnt help much. I am back to where I was pre steriods.

what are immuran/azathioprine or 6-mercaptopurine and what do they do?

sorry for all the questions. just trying to get a good gameplan when i see the doctor soon.
Posted 6/15/2015 6:57 PM (GMT 0)
Those drugs are helpful but it takes a long time for you to see results from them
I would suggest steroids to get the inflamation down enough so that you can benefit from rectal medications ( unless you are only having a lot of BMs in only the morning and than you can skip the steroids)
Rectal meds are great but too many BMs will make them in effective as you won't be retaining any of the drug
But you should definitely get in touch with your GI ASAP
Posted 6/15/2015 7:29 PM (GMT 0)
Mesalamine retention enemas in conjunction with the oral asacol are the next step (actually, should have been first step).

You can add steroid enemas or supps with the mesalamine enemas or just use steroid enemas if the mesalamine isn't doing it....but remember mesalamine takes time, and ultimately if you can get on them they will serve you well for a very long time.

Definitely try these options initially.

FYI....it's flare.

q
Posted 6/15/2015 7:39 PM (GMT 0)
What were you doing for treatments just before your "looked great" colonoscopy?
Posted 6/15/2015 7:49 PM (GMT 0)
sorry for the typo. I was taking ASACOL HD before the flare so really nothing has been added except for Canasa.
Posted 6/15/2015 9:41 PM (GMT 0)
So if pred didnt do anything for you then its time for an immunomodulator.

To answer the question of how they work, its really rather simple. Both drugs I mentioned mimic the molecules that make up your DNA. They get interspersed into the DNA which eventually causes those cells to die. They were originally cancer drugs from the 50's and 60's, but are now used mainly for auto-immune diseases. They work mainly on rapidly dividing cells, but have the most effect on you white blood cells. Long story short, they decrease the number of B and T cells in your body. Final bit of useful information, imuran/azathioprine is the prodrug version of 6-MP
Posted 6/15/2015 11:16 PM (GMT 0)
I think I am headed the Remicade route. I probably should have been on it sooner but I feel like I need to see if it will help me.
Posted 6/16/2015 12:19 AM (GMT 0)

cucubbie said...
I think I am headed the Remicade route. I probably should have been on it sooner but I feel like I need to see if it will help me.

Im not sure how insurance works but you MIGHT have a hard time getting coverage for Remicade if you havent tried imuran yet. I would also consider looking into Entyvio before Remicade if a biologic is your next choice
Posted 6/16/2015 12:45 AM (GMT 0)
I'm still confused about the colonoscopy which showed your colon "looks good". You got UC, you took meds which worked well enough to make your colon look good, and the pred didn't seem to help with your current symptoms. Something just doesn't seem right somewhere but I'm not exactly sure where.

I would worry that if pred didn't make you better than the Remicade might not do anything either. If you do get on remicade then you should also get on Imuran to help prevent antibodies from forming against the remicade but if you have to get on Imuran then I would suggest using that only first before starting the remicade, although Imuran can take several months to start working. If you haven't done enemas yet I would try those first before either Imuran or remicade.
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