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Ulcerative Colitis
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Posted 9/9/2014 5:38 PM (GMT 0)
I was diagnosed in January 2014 and have been struggling to reach remission all year. I had some improvement with Lialda and a little more when Rowasa was added for 6 weeks. I have been to a naturopath and a new internist who practices integrative medicine. She has me on a whole bunch of supplements see below. Recently I added psyllium seed powder after reading a few articles about it effectiveness in treating UC. I have certainly noticied that I take care of all of my business in the AM instead of feeling the urge all day long. My stomach is also more settled and less "gurgly". I did notice this morning that I have increased blood when I first go. Subsequent BM's are clear.
On the recommendation of my internist, I cut down to one Lialda (from 2) a day a couple of weeks ago. Her goal is to get me off of it completely but I wonder if the increased blood is from the reduction in Lialda.
I feel so improved but the blood is so discouraging. Does anyone have experience with psyllium seed and/or cutting back on stopping Lialda? I do have hemmies so maybe that's to blame?

Current meds/supplements
including digestive enzymes, mineral supplement, alpha lipic acid, tumeric, GI Benefits powder, fish oil, probiotics, lactose free kefir, vit D, iodine, grapefruit seed extract, lialda. No dairy or gluten.
Posted 9/9/2014 6:03 PM (GMT 0)
Why would you cut back on Lialda? Why did you only use the rectal meds for 6 weeks? Mesalamine is a safe medicine to use long term. Stopping it is just an invitation to disaster IMO.
Posted 9/9/2014 6:11 PM (GMT 0)
My GI recommended Rowasa for 6 weeks only and my internist (who I actually trust more than the GI) wants me off Lialda. She believes that she can treat me without pharmaceuticals which I really like. She ran more blood tests on me than I have ever had done....18 vials to be exact. She found food sensitivities which I have eliminated, low vitamin D and that I have very low progesterone levels. All of which can effect digestion. I just feel like she is tackling this from so many different angles while the GI only looks at one part of my body. I feel so much better in the last week. I just hate that I still have the blood. But my hope is that I am still healing and it too will go away like the urgency, gassy belly and sleepless nights have.
Posted 9/9/2014 6:42 PM (GMT 0)
jlwal, Uc is a chronic, lifelong disease that requires a maintenance medication for life. Your maintenance medication is Lialda and possibly Rowasa as well. Both medications are perfectly safe, and can be taken for the rest of your life. You must've misunderstood your GI, as they are for meant for life, not 6 weeks.

We get so many post of people stopping their uc maintenance medication only to get into a bad uc flareup. And the medications they quit are no longer enough, don't work the second time. So they end up needing stronger medications then they initially had used. If something works for you then most certainly do not quit it, rather stay the course.

Trusting a naturopath over a GI sounds like a very bad idea... Alternative medications are fine, use them together with your uc medications, not in place of them. Uc is a very funny disease, what works for one person does not necessarily work for another. Just because one supplement works for one person has no guarantee whatsoever to work for you, or I for that matter.

You should be taking 4 Lialda pills a day (4,800 milograms). You should be taking Rowasa nightly. Once your symptoms are gone, you can take the Rowasa once a week.

As far as the alternatives go, try them one at-a-time, wait a few weeks and see if there is an improvement in your symptoms. Based on your results, either continue or discontinue the alternatives. Alternative medications can be quite pricey so only take what works for you. Do not go by what works for others, again this disease varies quite a lot among individuals. Rather, try them out, vet them each, by yourself.

Good luck,
Posted 9/9/2014 7:24 PM (GMT 0)
My most recent course of action was prescribed by a MD, not a naturopath. She just believes in incorporating eastern and western medicine whenever possible.
My GI had me on 4 Lialda pills when I was first diagnosed and then he told me he likes his patients to do 6 weeks of rowasa. There was no misunderstanding. He reduced me to 2 pills pretty quickly after diagnosis as well.
I was asking my original question because...not to be graphic and I know no one here cares:)...the blood only happens with the first BM. Any subsequent ones are clean. It would seem to me that is from the lower part of my colon and rectum and I would agree with you that treating it with Rowasa would probably be a good course of action. And I am feeling sooooooo much better.
Posted 9/9/2014 7:33 PM (GMT 0)
Seeing blood is never a good thing. What color is it? Bright red blood means it is fresh and likely comes at or very near the rectum (could be from uc, could be from hemorrhoids), blood gets a darker wine color as it's origin goes further and further up the large intestine. Blood is black that originates from the stomach. Is it a little blood on your tp when you wipe, a little on the poop, or a slick of blood on the surface of the bowl?

Blood means something isn't right, therefore I am criticizing you for reducing your uc meds. As seeing blood means you should do quit the opposite, increase your meds. That is unless something else is causing the blood, like hemorrhoids if you have a history of them.

I'm glad you are feeling better, and you could feel better still by getting rid of the cause of the blood...
Posted 9/9/2014 7:56 PM (GMT 0)
This is a black and white issue. As you drop off your meds you are getting worse, not better. While the thought of being treated without meds is appealing, you have to look at the facts. Facts don't lie. You are on the road for having a recipe for disaster. Lialda and the Rosasa were very, very safe meds that you can take forever. You are on course for eventually having a full blown flare where the Lialda and Rowasa might not work anymore or work as well then you will have to step up to the far more dangerous meds. Is that what you really want?
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