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Ulcerative Colitis
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Posted 5/3/2013 1:22 AM (GMT 0)
This forum has been so helpful! I was diagnosed with UC on the left side March 15 after a colonoscopy and a blood test confirmed unfortunately. I have been pretty awful since. My doc started me on 2 Asacol 2 X per day and also an Asacol enema; I followed that medication downhill for two weeks. It made me way worse in terms of blood loss, weight loss, energy, frequency, and life. I have two toddlers and work full time so this all sucks.... for everyone in any situation not just me!

Anyway, I was then put on 40mg of prednisone and a hydrocortisone enema. My energy level increased which was great but I have not seen much improvement. I "go" slightly less often but nights are still pretty bad, up every two hours almost. I have been on this regiment for almost 3 weeks now. Is this par for the course with prednisone or should I have more dramatic improvement after 3 weeks? It seems like a lot of people improve and start tapering by now. I really think the prednisone is making my heartbeat out of whack as well and general anxiety too.

I go see my doctor tomorrow and really don't want to go to the next level of medication. Does anyone have any advice?

I've been making a homemade yogurt/sunflower butter/spinach smoothie for the last few days and that seems to help provide some relief actually. I've tried eating only Specific Carb Diet foods but it does not seem to make much of a difference to make it worth all of the effort.

How long does it usually take to get a flare up under control?

Any advice would be much appreciated. I read so much everyday and try new things but feel like I am all over the place.

Thank you!
Posted 5/3/2013 2:22 AM (GMT 0)
What was your condition before actually being diagnosed?
Posted 5/3/2013 2:40 AM (GMT 0)
I had blood in my stool for about a month and bad stomach pain, that is when I had the colonoscopy. Now I always have a lot of blood. I debate whether the medicine has made everything worse or the disease has just progressed.
Posted 5/3/2013 3:11 AM (GMT 0)
Asacol made me worse. Prednisone is only thing so far that helps me, but still it took a long time for me to be able to roll over during the night and not have to get up running to the potty. It is so frustrating, but hang in there.
Posted 5/3/2013 3:14 AM (GMT 0)
The first time I took pred, I was 99% better the day after. Not to say this is common for everyone, definitely give yourself time to heal but if you're not seeing a lot of improvement, I would consider asking the doctor about whether it's possible you have a GI bug that could be treated with an antibiotic.
Posted 5/3/2013 11:36 AM (GMT 0)
creepycolon,

Welcome to the forum.

You should know that the meds don't work for everyone.

They did not work for me.

Also, some people get worse on the mesalamines ( and that's a result of an intolerance to the meds). If you look up Asacol, it will tell you on the side effects that it can make your UC symptoms worse. And if that's the case, you would need a non-mesalamine medication.

Ask you doctor about it.

It's good you are doing the SCD. I started out with the SCD, which really didn't help enough.

But when I switched to PALEO, I found it made a huge difference.

And then there are supplements. Are you on any?

Probiotics? Vitamin D3? Slippery elm powder? L-Glutamine amino acid powder?

If you are interested, there are things IMO that you can control, which will have a direct impact on your disease, the symptoms you experience and their severity.

I was able to control my UC into remission through various supplements, probiotics, diet modification, and LDN , low dose naltrexone.

For more info on the protocol which has put me into remission, please go to this link: https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.

I hope you feel better and let us know how we can help you.

Posted 5/3/2013 4:55 PM (GMT 0)
Thanks, I have not started any supplements but see almost everyone has a hefty list of them in their tag lines. I need to hire a research assistant to get me through all of this!
Posted 5/3/2013 5:17 PM (GMT 0)
When I was first diagnosed, my dr kept increasing my asacol.  It ended up that I was taking 11 pills a day but that kept me in remission for 18 years.  I wonder if they should increase  your asacol some?
Posted 5/3/2013 5:17 PM (GMT 0)
Meds did not work for me, either. Keep up the Sunflower Seed Butter/Spinach-that REALLY helped clear up most of my blood and mucus and has worked for many people on this board. Also, since your hiring a research assistant (LOL), do a search on Resistant Starch on this board, as well. Many (myself included) have found remission through diet modification utilizing SF seeds/spinach/resistant starch.

Keep your head up.

Best...
Posted 5/3/2013 5:20 PM (GMT 0)
40mg Prednisone should start to work practically the same day, so if you have barely seen an improvement in 3 weeks you never will. You should start tapering off it. It's not a drug you want to be on for any longer than you absolutely have to. The standard taper from 40mg is to reduce the dose by 5mg every week to 0mg, but speak to your doctor about it.

Sorry the Pred hasn't worked better for you. Hopefully you'll respond better to another drug. If you want my opinion about my supplements, 95% of them are probably a waste of time. Dietary modification is more worthy of a try, but it can take weeks or months to see an improvement. I admire people who have the stamina to stick it out, tbh.
Posted 5/4/2013 11:51 AM (GMT 0)

protocolteck said...
Meds did not work for me, either. Keep up the Sunflower Seed Butter/Spinach-that REALLY helped clear up most of my blood and mucus and has worked for many people on this board. Also, since your hiring a research assistant (LOL), do a search on Resistant Starch on this board, as well. Many (myself included) have found remission through diet modification utilizing SF seeds/spinach/resistant starch.

Keep your head up.

Best...



Did you eat other food or just live I'm sunflower/spinach for a few days? Everything else seems to cause trouble. How long did you try meds before throwing in the towel? I hate medicine.
Thanks!
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