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Flaring question I think?

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Ulcerative Colitis
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Posted 1/10/2011 6:13 PM (GMT 0)
I have seen many who have violent flares with lots of BM and blood.

My symptoms seem to be dramatically different. I was DX with mild/moderate pancolitis in July 2009. At the time, my flare was lots of urgency, mucous, and a little blood. After taking 4 lialda a day, the majority of my symptoms almost immediately cleared up. The GI said he expected things to still be soft...which they were.

A few months later the symptoms began to return and I was increased to 6 lialda a day plus canasa every night for 2 weeks which brought things back in check. I was then taken off of canasa.

Since, my condition seemed to remain somewhat constant, but I don't think I can ever say I was truly in remission. Then again, I don't think I know what that means.

Every day since, I probably have 2 BM, but usually very soft and not very formed. I haven't had too much pain and no blood.

But, lately things seemed to have worsen again, with pain all over my left side (sometimes burning, sometimes cramping), sometimes the center of my chest and sometimes my right side. BMs are now more like 4 or 5. Very loose occasionally D. I have started the canasa again, but it doesn't seem to be working.

Is this a new flare or just one that never went away??? Has anyone experienced this? Is it unreasonable to expect everything to go back to the way it was before July 2009, or do I need to change my expectations?

I am going back to my GI in a couple weeks and want to have some ideas.

Thanks in advance!

 

Posted 1/10/2011 6:58 PM (GMT 0)
You need consistency and better rectal meds. Don't get why you would have been off the Canasa after two weeks.

Yes, most of us have been through this.

Here's the concept bluntly, because I explain this endlessly and am running out of energy....

treat both ends. UC starts at the rectum and needs to be treated. It starts there and is the last place to heal no matter how high up the UC has spread (for loss of a better word).

Get on a 5ASA retention enema. I take it you're in the US..so Rowasa would be the place to start. Use them nightly until you feel perfect. That time line varies because life and crap always happen to influence our healing/emotions/coping, etc.

If all remains well, stay on them nightly for another week and go every second night for at least a month. If all is fine..continue for another week and then go to every third night.

The belief and I'm a follower of it, is that twice a week enemas maintain a remission. Now, that again is subjective, and you may flare, with which you will have to (should) go back to nightly enemas and start the process all over again.

Each flare should get less and less, and even though you have pancolitis, your flares in the future will more than likely (hopefully) be limited to the lower part of your colon. Symptoms will be different...you will have more formed stools, possible constipation, etc, urgency...

OK, read the forum ... we discuss the need for rectal meds endlessly. Take it to heart, ask pertinent questions that will help you understand why.

I don't have pancolitis, but others do and follow the both end approach with 5ASA meds. They are still the safest (unless you are allergic or sensitive) for long-term use. it would be best to not use the top dosage orally if you are able to possibly eventually go lower...that's a constant, however...I don't suggest you go off them.

Take probiotics, use fibre supplements.

q
Posted 1/10/2011 7:24 PM (GMT 0)
Thank you for the suggestions!

I have read the forum in great detail and have seen a lot on the use and needs for Rowasa.

I guess I never connected what I have experienced/experiencing with flaring as my symptoms have never seemed as severe as others have posted.

I will definitely get the GI to prescribe the Rowasa for me!

 

Posted 1/10/2011 7:34 PM (GMT 0)
What you experience and what's going on are different., Never lower the bar to what you expect and never raise it to what you'll tolerate.

My doc mentioned that some with visual inflammation may have no symptoms while others with minimal inflammation have extreme symptoms.

the point, really....is to keep inflammation at bay and you also don't want slow simmering inflammation continually. It ups the risks of cancer and future uncontrollability from the 5ASA meds. There's a process to use them...it took me 2 years to get the hang of it.

Ny doc's fave word for me was "patience" to let the meds do their thing.

q
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