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Ulcerative Colitis
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Posted 9/8/2009 4:51 AM (GMT 0)
I was diagnosed with UC about a year ago. Since then I've been feeling well until a couple of weeks ago when I started flaring. Unfortunately I am currently in between G.I. doctors, one has recommended me to another, but I have yet to hear from the new doctor so I have no idea when I will be able to see him. I have called both repeatedly with no answers from either. I live in Canada so I am at the mercy of the referral system, I am not able to just call up another doctor.

I am on Asocol - 6/day (2 pills 3 times/day). My first doctor mentioned that I could double my original dose if needed - should I build up to this gradually or increase all at once? How long can I keep taking the higher dose? Is there anything else I can try in the interim until I manage to see a doctor?

I'm very frustrated and would appreciate any advice!

Thanks!

ldarcy
Posted 9/8/2009 4:57 AM (GMT 0)
Are you in a bad flare with symptoms and 6/day is not keeping symptoms at bay? You can increase to 9 or 12 a day if necessary. I take 9 a day and it helps me a ton. Also, you can add rectal 5ASA medication to help control the inflammation in the rectum that is not controlled with oral medication. I began taking 9 a day and never built up to it. You can try Salofalk suppositories, we call them Canasa in the US, they help me a lot but if your inflammation is more severe you may need enemas or more potent drugs.
Posted 9/8/2009 5:56 AM (GMT 0)
I am no doctor, and you really need to see one. Since you already established that... I'm wondering if you've tried any probiotics? They are something that can be purchased without prescription and sometimes help me. There are many different kinds out there. I've been taking a more expensive kind called "Pearls" (just the name brand on the box). I really do think they help.

Obviously you want to take your asacol, and yes, upping it might help you out. I would definitely try that considering your doctor also mentioned doing so.

Other than those two things... until you see a doctor just rest all you can and keep stress low.

Zach
Posted 9/9/2009 4:34 AM (GMT 0)
I have upped my asocol to 9 per day, if that doesn't help in a few days I will go to 12. I agree that I may need other medication but without a doctor to rely on right now, that's not really possible.

I have been on probiotics in the past but they didn't seem to make a difference. Maybe a different kind would help but I'm a bit afraid to start experimenting while I'm not feeling good.

Thanks for your suggestions!

ldarcy
Posted 9/9/2009 6:02 PM (GMT 0)
Hi ldarcy,
Interesting about increasing your asacol. I take 6 a day too and wonder if I should increase to 9. I so want to get into remission!!
Where is your colitis? Distal responds better to rectal medication I believe. Have you thought about going to emerg or a walk in clinic to get a prescription for salofalk enemas until you can get into a GI? Where are you in Canada? I'm in Ottawa and I got in really quickly to see my GI. If by any chance you're in Ottawa I'll give you his name so you can try to get a referral to him. Maybe a clinic or emerg could give you a referral if you had a name.
Posted 9/11/2009 12:08 AM (GMT 0)
Hi Redfern

My colitis is throughout the colon (pancolitis). So far increasing the asocol hasn't done a whole lot for me, I am planning to increase to 12/day tomorrow. My GI did tell me I could try this (before he sent me away to another GI!), I wouldn't double up on meds without some kind of medical advice!

I am going to my family doctor next week since I'm running out of Asocol and I need a repeat on the prescription - I will ask him if there's anything else he can give me but I doubt that he will.

Thanks for the offer of a name, but I'm in Calgary so I have to deal with the system here. I already have a referral in with someone so there's no sense trying to see someone else. The wait for a GI appointment is generally one year, I should get in sooner since I've been referred by another GI, in the meantime I will keep calling them (and they will likely keep ignoring me!). I will go to the emergency department if and when I feel my life is on the line - that's about the only time they are truly helpful!

Thanks for your help!
Posted 9/11/2009 3:01 AM (GMT 0)
ldarcy...you need to be on rectal meds as well because the Asacol tabs aren't enough to deal with the rectal inflammation (where UC starts by the way...first to inflame, last to heal, regardless if one has pancolitis or limited).

Definitely ask your GP for a prescription of Asacol to the 9 (as per instructed by your other GI) with refills....PLUS a request for the rectal meds. I would suggest the Salofalk retention enemas of either the 2g or 4g dosages.
They come in packs of 7 dosages....so you'll need some refills.

As well...ask the GP if it's OK for the pharmacy to call you for refills.....while you're waiting to get in with a new GI.

Please don't take prednisone.....which your GP may suggest.

quincy
Posted 9/11/2009 4:41 AM (GMT 0)
quincy... I will ask him about the rectal meds - I've never had to take any before so I had no idea what to ask for! How long do they need to be taken for - just until things get better or is it more long-term?

Is increasing the Asocol to 12/day a bad idea? I don't want to take them if it's not going to help.

Finally, what exactly is prednisone and why do you advise against it?

Thanks so much for your advice, I appreciate the help!
Posted 9/11/2009 7:29 AM (GMT 0)
The Asacol at 12 might not be needed if you take the retention enemas. I would stay at 9 plus the rectal meds and increase the asacol later if you need to.

Asacol won't reach/treat the rectum, plain and simple.

The enemas are to be taken nightly until one feels "normal" and that symptoms have ceased. A tapering process is next....to which some taper off and others, such as I, taper to maintenance.
They can be increased or decreased as needed to deal with flares.

Prednisone is a steroid systemic medication to help shut down the autoimmune reaction and deal with inflammation. There are lots of side effects and many have a difficult time to decrease at the lower dosages and get off the med without reoccurrance of flare symptoms.

Pred is a miracle med....but I think that it's prescribed too often as a first-line med.

Basically, using the 5ASA meds, oral and rectal, is a commitment by the patient. It sucks, but side effects are still minimal to none if one has no problems taking salicylates. It can also be used for a very long time....I sure will be ticked if they stop working for me...lol..

Of course, there are some who have given their all with the 5ASA (oral/rectal) and ultimately end up on pred...some with success, others not.

Do the homework and be prepared for your doc's appointment.

quincy
Posted 9/11/2009 1:35 PM (GMT 0)
quincy - thanks for all your helpful insights - I will read up on the meds before I go.

Wish me luck, I'll report back on my GP appointment next week!
Posted 9/11/2009 2:38 PM (GMT 0)

quincy said...
ldarcy...you need to be on rectal meds as well because the Asacol tabs aren't enough to deal with the rectal inflammation (where UC starts by the way...first to inflame, last to heal, regardless if one has pancolitis or limited).


quincy

I did not know this. This is why the surgeon thinks I could have Crohn's. My rectum is not inflamed but the rest of the colon is. Is the rectum ALWAYS inflamed with UC?
Posted 9/11/2009 4:30 PM (GMT 0)
There is involvement, but it seems that very few may have the some rectal sparing of visible inflammation except there are permanent changes on a microscopic level of consistent inflammation.

I would say yes regarding the pattern of UC, but if the entire rectum isn't involved, do have biopsies done to find out what's really going on regarding the microscopic level.

CD in early stages mimics UC....plus there are others that mimic it such as microscopic colitis.

quincy
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