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Crohn's Disease
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Posted 4/28/2018 2:27 AM (GMT 0)
I was diagnosed with collangeous colitis recently. The first two meds my specialist prescribed I can not afford. The third I seem to be non responsive to. At this point I am getting desperate. I am up anywhere from 2 to 9 times a night. Even plain white rice seems to have a reaction to so I am eating little to nothing. I don't know what to do. I cant function and don't know what to do. Any suggestions?
Posted 4/28/2018 2:37 AM (GMT 0)
What meds were prescribed that you couldn't afford? And what med did you try and were non-responsive to?

The first-line treatment for microscopic colitis (which includes collagenous colitis and lymphocytic colitis) is simply pepto-bismol (bi****h subsalicylate) at up to 8 doses per day, for several weeks. And then taper down.

The prescription meds are usually a form of budesonide or a mesalamine. Budesonide is pretty effective for microscopic colitis, but yeah, it can be expensive. Mesalamine medications have several name brands that are expensive, but there are generics available that are somewhat cheaper.

But those are for use when pepto-bismol doesn't work well enough. So assuming there's no reason you can't take pepto (some people can't take it), you should start there. Get generic at Target or Walmart or Costco or Sam's Club or something and it's dirt cheap.
Posted 4/28/2018 3:00 AM (GMT 0)
The first med was budesonide at a cost of $811. The second is Mesalamine at a cost of $1014. These are 30 days worth. I am using Pepto but I also have 2 large ulcers and the Pepto isn't good for that. Besides the Pepto only slows things so at least I can make it through the work day.
Posted 4/28/2018 3:05 AM (GMT 0)
Oh the med I am not responding to is azithromycin. I was taking the powder form but I had difficulty keeping it down. The only food I can eat that doesn't spark a response in my guts is fruit snacks. At this point I am desparate to find some way to calm my system down.
Posted 4/28/2018 3:13 AM (GMT 0)
Yeah, I figured it would be budesonide and mesalamine. They're usually expensive meds.

Are your ulcers gastric ulcers? If so, how have they been treated, or have they?

How much pepto are you taking? It does more than slow things down - it's a mild anti-inflammatory.

Azithromycin, as far as I know, doesn't have any data supporting its use in microscopic colitis. In fact, antibiotics are a known risk factor for causing flares or worsening. Are you taking it specifically for your collagenous colitis? That seems like a total shot in the dark.

The main thing with micro colitis is to keep from getting dehydrated. So make sure you're getting enough liquids, whether that be water or pedialyte or equivalent. Soup broths might be good too. To get calories, have you tried something like Boost or Ensure?
Posted 4/28/2018 5:09 AM (GMT 0)
I'm sorry you're going through this. We can relate. It's exhausting going that many times at night.

A few things: check your vit D levels and try taking 5000iu's/day
You may want to try a small dose of steroids to get things settled. It's an excellent rescue drug. You may also want to speak to your doc about rectal enemas.

Something I've found to be helpful (especially when I was working) was to take 2 imodiums in the morning and metamucil caplets to help bind and bulk the stool. Start with small doses of fiber...may 1 cap with imod. then 2 caps etc. I got to 10 fiber caps a day along with 2 imod and it really helped to control things.

B12 shots may help with your energy but it's so important to not get dehydrated. Get the yummiest popsicles, gatorade, ginger ale, ensure and whatever else you can tolerate. May try the beginner SCD diet for 3 days to get some nutrients in.

Hope this helps. Stay in touch.
Posted 4/28/2018 7:23 AM (GMT 0)
^U B Tough brings up what might be a good suggestion - prednisone (a corticosteroid like budesonide, but way, way less expensive).

Usually prednisone isn't recommended for microscopic colitis because the side effects of prednisone can be worse than the disease itself. It's overkill, so to speak. That's why budesonide (entocort) is typically used - it's strong enough and has fewer side effects.

But budesonide is crazy expensive while prednisone is dirt cheap.

So if you're desperate and not getting relief from other things, you could try a short course of prednisone at a modest dose. It will probably work quickly and cost <$50.

One drawback, however, is that prednisone often causes excess stomach acid production and could wreak havoc on any gastric ulcers you may have.

But it's worth discussing with your doctor if you can't afford other treatments and you're desperate.
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