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Questions I should be asking, need help

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Ulcerative Colitis
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Posted 5/16/2013 10:42 PM (GMT 0)

I am a 61 yr old female dx with UC in 2007.  I am currrently in a flare that I have unsuccessfully been treating since November 2011.  There have been several attempts in treating me with Prednisone. In mid December I started a course of Prednisone and started taking Apriso with no relief.  In March I began using Humira 2x monthly.  about three weeks ago I went on vacation and felt good, I thought was making progress, starting feeling like a human being again: minimal blood, mucuous, urgency and pain in general.  Long story short, I had two glasses of wine and the next day I was back to square one plus...blood, mucuous, urgency, now I have constipation. hemorrhoids and excrutiating pain when passing gas or having a bowel movement.  I have been taking Miralax but still have the feeling of needing to void.  I'm a mess!

I am scheduled for a colonoscopy next Wednesday.  Besides asking my MD to refer me to a GI; what questions should I be asking?  l could use some sound advise and different opinions.

Thoughts?

Post Edited (Farshtunkeneh Tuchus) : 5/16/2013 4:59:39 PM (GMT-6)

Posted 5/16/2013 10:55 PM (GMT 0)
FT,

Welcome to the forum.

Glad you've found us.

Is the miralax helping you?

I do believe in doing things more naturally, so I would suggest: magnesium as in natural calm product, or even vitamin c - to help with constipation.

You could ask how the doc feels about:

- probiotics

- treatment options, which steps, which meds, and if those don't work, what would be the next step

- rectal meds

- testing you for low vitamin d3

IMO, these would be a good starting basis.

 

Posted 5/16/2013 11:21 PM (GMT 0)
Farshtunkeneh Tuchus, love the name. Welcome to the forum. Sorry for your tsuris.

I'm confused about who's been treating you since 2007. Has your regular DR been the prescribing physician for all the meds you've tried?

Have you ever tried rectal mesalamine? When was the last time you were scoped? Do you know the extent of inflammation?

InSoFla has some great suggestions.

If you've been taking prednisone off and on it may be that your UC is refractory to steroids now. Rectal mesalamine is a very effective treatment for inflammation in the rectum and even up into the sigmoid colon. That, in combination with oral mesalamines and the Humira, might be able to get you back into remission.

It's interesting that wine was the trigger for you. Don't drink any more wine!
Posted 5/16/2013 11:28 PM (GMT 0)
A little wine at Thanksgiving took me out of the best I'd felt since my diagnosis, and put me back to bleeding as much as I was in the hospital.

Who is doing your colonoscopy?

You may have just hit a bump in the road and adjusting a little will get you back to where you were.
Posted 5/16/2013 11:54 PM (GMT 0)
Alcohol is generally not good for UC'rs. Another possibility is that you have a histamine intolerance. Wine, other alcohols, and certain foods are high in histamine and that can cause UC problems if you have a histamine intolerance. Since taking the digestive enzyme DAO, which breaks down dietary histamines, I have had no problems with high histamine foods.
Posted 5/17/2013 11:25 AM (GMT 0)

Thanks to all for the suggestions and help. Much appreciated!
InSoFla: No the Miralax is not helping. I introduced VSL#3 about 8 weeks ago, no noticeable difference. As far as further treatment options my Doctor wants to refer me to a surgeon. Which I don't feel is really an option. I will ask him to send me to a GI, he's a great Dr. just not experienced in treating these issues. After my request, he prescribed the cortenema on Wednesday, I've had some improvement painwise. I go for blood work next month and I'll call his attention to the vitamin D3.
Kazbern: Yes my Dr. and his associate have been treating me all along. They are Gerentologists, the associate "specializes" in colonoscopies. I have Canasa Suppositories, thinking maybe I should add those somewhere inbetween the cortenema and Anusol HC Supps? My last scope was June 2012. My memory isn't real clear but I do recall him telling me the inflamation wasn't high into the colon and he did remove a small polyup. He pretty much dismissed it as nothing serious and not to worry about it. Just to continue taking my meds. Yeah, no kidding, no more alcohol period. Don't know why I did it anyway, just got caught up in the moment, last day of vacation, out to dinner with good friends. Lesson learned. Thanks, the name accurately sums up my current condition.

Tornado6: My Dr's associate specializing in colonoscopies will be doing the honors. I'm always hopeful for any sign of improvement, baby step are welcomed!

Garylouisville:  Interesting about DAO.  Never thought about it.  I'll do some reading about it and discuss with my MD.

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