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Ulcerative Colitis
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Posted 1/16/2016 12:31 AM (GMT 0)
Guys, Girls. Just wanted to say hi and do a first post!

Current meds:
Asacol 8 per day
Prednisone 7 1/2 day on taper 2.5mg per week
Metamucial tablets
Multi vitamin

***testing out the nopal cactus leaf water*** Jan 15, 2016 start

Diagnosed summer 2009 with Proctitis/Ulcerative Colitis.
- asacol and rest got me into remission in about 2 months where I stayed....... Till Aug 2015 = flare up!

Been on a crappy battle from then on, on my 4th prednisone taper now as it keeps failing after coming off or once I got stomach flu.

Not sure what to do... Kinda at a loss and would like some guidance and support.
Posted 1/16/2016 3:29 AM (GMT 0)
The nopal water works for me, but it was very slow and I wasn't in a a bad flare when I started drinking it. I was simmering for months and the doctor wanted me to move to Humira because my body couldn't handle azathioprine (Imuran). The nopal water added to the Asacol HD has now kept me in remission for 9 months!

I suggest adding rectal meds before moving up the med ladder. They should start to help you within a few weeks. If your inflamation is limited to your rectum, Canasa suppositories may be enough. If your inflammation is higher up into the sigmoid then mesalamine enemas would be best. Many times doctors don't suggest rectal meds (mine didn't -- I asked after reading about them here), but they are a great treatment and really work.

Have you had any stool tests to rule out pathogens?
Posted 1/16/2016 3:33 AM (GMT 0)
HI! Welcome! I like your user name scool

I'm surprised to read you're not on any butt meds. I'd definitely add those before trying anything else.
Posted 1/16/2016 3:33 AM (GMT 0)
And here is a testimonial about rectal meds lol

www.healingwell.com/community/default.aspx?f=38&m=3568671
Posted 1/16/2016 4:23 AM (GMT 0)
Thanks everyone!

Yeah I asked when he wanted to start prednisone about how it was delivered? Told me oral is the easiest? I dunno. I have had it for years but never had to battle it so hard.

Work stress is 100% sure the cause of this one! It's only work people remember that... Not worth this flare that's for sure
Posted 1/16/2016 1:26 PM (GMT 0)
Welcome. If you've flare 4 times then your maintenance medications aren't sufficient. Best practice is to max out the mesalamine medications, 4,800 milligrams a day oral and 4,000 milligrams rectal, and if that's not sufficient move up the medication ladder. Immunomodulators (Imuran, 6mp, or aza) are the next stop.

You're taking 8 asacol pills a day, if they're typical 400 milligram pills then that's only 3,200 milligrams a day. I'd ask your doctor about upping the dose to 4,800. Rectal route mesalamine (rowasa or pentasa enema) are something to ask about, as well. They're especially good at treating urgency.

Corticosteroids are available in oral form, prednisone is the go to. Delayed-release oral pills like uceris, entocort uc, and clipper are also an option and produce less side effects than prednisone does (everyone gets side effects from prednisone). Rectal route corticosteroids are also available, steroid suppository, foam, and enema. Rectal route is just like the delayed-release oral pills, less side effects.

Why do we keep mentioning rectal route? Uc always starts at the rectum and goes up the intestine. Rectal medications are the most direct and effective way to treat uc (rather than going through the entire long and winding digestive path with a pill, just to treat the veey end of it).
Posted 1/16/2016 6:13 PM (GMT 0)
Thanks for the pointers iPoop! I have a GI appointment mid week so I will def. be asking about the increase in Asacol. I have a hunch this is all I will need to get over the hump.




iPoop said...
Welcome. If you've flare 4 times then your maintenance medications aren't sufficient. Best practice is to max out the mesalamine medications, 4,800 milligrams a day oral and 4,000 milligrams rectal, and if that's not sufficient move up the medication ladder. Immunomodulators (Imuran, 6mp, or aza) are the next stop.

You're taking 8 asacol pills a day, if they're typical 400 milligram pills then that's only 3,200 milligrams a day. I'd ask your doctor about upping the dose to 4,800. Rectal route mesalamine (rowasa or pentasa enema) are something to ask about, as well. They're especially good at treating urgency.

Corticosteroids are available in oral form, prednisone is the go to. Delayed-release oral pills like uceris, entocort uc, and clipper are also an option and produce less side effects than prednisone does (everyone gets side effects from prednisone). Rectal route corticosteroids are also available, steroid suppository, foam, and enema. Rectal route is just like the delayed-release oral pills, less side effects.

Why do we keep mentioning rectal route? Uc always starts at the rectum and goes up the intestine. Rectal medications are the most direct and effective way to treat uc (rather than going through the entire long and winding digestive path with a pill, just to treat the veey end of it).

Posted 1/16/2016 7:20 PM (GMT 0)
not so since all that oral med won't hit the rectum anyway. suck it up and live up to your chosen name.

q
Posted 1/16/2016 7:28 PM (GMT 0)
Ha-ha OK Quincy... Only way to figure it out is to give it a go


quincy said...
not so since all that oral med won't hit the rectum anyway. suck it up and live up to your chosen name.

q

Posted 1/21/2016 3:45 AM (GMT 0)
Quick update after GI meeting.

1- upped my asacol to 12 400mg tablets
2- agrees prednisone has to go.. Wants me to finish the course I'm on tapering 1 5mg tablet per week till I get to 3 pills... Then taper half a pill per week.

I have been improving through this last week. Tapered down to 7, 5mg prednisone.
No mucus! No blood! Usually 2-3 bowel movements per day loose formed.
Following the carbohydrate diet Strictly! Breaking the Vicious Cycle... Actually feel better overall after the initial 4 days of sugar deprivation.
Going to bump asacol to 12 pills as GI suggests... Hope it holds the UC as I get off the prednisone.

If I can't get off without flare then its next med. Imuran. Fill me in on that one, GI says its generally well tolerated. Why use prednisone if it works better and less side effects?

Thanks
Posted 1/21/2016 5:52 PM (GMT 0)
I bet you never mentioned the rectals either......lol
you'll need to change your name,
q
Posted 1/21/2016 5:57 PM (GMT 0)
Yeah, gotta say....rectal meds are the way to go. I know it is hard to wrap your head around but they are not bad once you get used to it. I do like your screen name however. Don't fear the rectal meds... (isn't that a song...cmon baby don't fear the rectal meds?. lol)
Posted 1/22/2016 4:29 AM (GMT 0)
I actually totally forgot.. but only because there was so many other questions I had for him.

I go back I a couple weeks and will ask

quincy said...
I bet you never mentioned the rectals either......lol
you'll need to change your name,
q

Posted 1/22/2016 4:35 AM (GMT 0)
That's where a paper list with questions helps.....

Always bring one, just a suggestion for efficiency.
q
Posted 1/22/2016 4:38 AM (GMT 0)
Thanks I will next time and let you guys know the verdict.



quincy said...
That's where a paper list with questions helps.....

Always bring one, just a suggestion for efficiency.
q

Posted 1/22/2016 9:15 AM (GMT 0)
It's all about the butt meds, thebuttwhisperer! Rowasa enemas cleared me up more than once. I keep a stash for when I feel a flare coming on, and its usually stopped in its tracks. And I have pancolitis!
Posted 1/22/2016 4:57 PM (GMT 0)

hateuc said...
Yeah, gotta say....rectal meds are the way to go. I know it is hard to wrap your head around but they are not bad once you get used to it. I do like your screen name however. Don't fear the rectal meds... (isn't that a song...cmon baby don't fear the rectal meds?. lol)

Not at all shy on trying the rectal meds. I just want this flare controlled and get off the darn prednisone.

Last few days get up and BM pretty much right away.. Skinny stool sometimes very light mucus. Breakfast then another really good BM with no issues..almost normal loose formed.
That's usually it till next day.
Posted 1/22/2016 5:56 PM (GMT 0)
You're not listening...and that's what the whisperer part means.

You'll eventually understand, grasshopper.

q
Posted 1/22/2016 7:31 PM (GMT 0)

quincy said...
You're not listening...and that's what the whisperer part means.

You'll eventually understand, grasshopper.

q

I realize you are endorsing the butt meds.. Not disagreeing with you. I will be asking next meeting.

Appreciate any help here but not interested in attitudes... Enough of that in this world!
Posted 1/22/2016 8:02 PM (GMT 0)
sorry to beat a dead ............ whatever, butt,

a. don't ask - insist
b. don't wait - act now

just what me and my heiny would do -
Posted 1/22/2016 8:13 PM (GMT 0)
endorsing sounds so formal....trust me when I say you haven't seen my attitude at all. I'm trying to lighten up the repetitiveness. I was on a jocular role I thought... because we know the value of them, and you're the one wanting to get the flare controlled.

It's one thing you haven't tried....so sooner than later is better. You could call the doc and request them..no need to wait for a month. What's even better is that next month your doc will see your progress rather than your frustration (hopefully).

There are mesalamine liquid or steroid liquid and foam.

we are in support of you...with encouragement.

q
Posted 1/22/2016 8:28 PM (GMT 0)

quincy said...
endorsing sounds so formal....trust me when I say you haven't seen my attitude at all. I'm trying to lighten up the repetitiveness. I was on a jocular role I thought... because we know the value of them, and you're the one wanting to get the flare controlled.

It's one thing you haven't tried....so sooner than later is better. You could call the doc and request them..no need to wait for a month. What's even better is that next month your doc will see your progress rather than your frustration (hopefully).

There are mesalamine liquid or steroid liquid and foam.

we are in support of you...with encouragement.

q

Never knew I could ask for meds over a call. I suspect he will want to see me as its totally new.
I did ask when he first subscribed prednisone if it was a rectal. He said nope oral is easier, kinda wish he gave both at hit it hard.
I will call Monday as he is off Fridays.

Thanks for all help. everyone
Posted 1/22/2016 8:31 PM (GMT 0)
Sorry to any offended.. Blame the prednisone! Been effecting me this way lately.
Just tell me to bugger off lol
Posted 1/22/2016 8:36 PM (GMT 0)
Keep us posted. Since you're on the systemic prednisone, I'd suggest you ask for Rowasa or the generic mesalamine.

If the doc says wait till next month, ask if you could see him sooner if he insists on that part.

Regardless...you are on medications and not left out.

Just saying as well that many gastro doctors don't prescribe rectal meds because they either have an aversion themselves or ASSume that patients won't be compliant. Pred is easier for them and is obviously affordable.

They also underestimate the powerful need a patient wants to get better without side effects and withdrawal boomerang effects.

Hang tough...the process to heal takes time. Frustrating, yes...patience helps.

q
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