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Ulcerative Colitis
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Posted 3/26/2012 12:00 AM (GMT 0)
Hi, I am recently diagnosed with UC, pancolits 2/2012.  Started with the flare around 2/7; but thought I had the flu.  3 trips to the ER, finally admitted to the hospital for IV steroids, total stay 5 days.

For about the first 2 weeks, up to 10-15 bloody BMs a day.  Now, about 3 -6 bloody BMs a day.  Some formed, most not.  Mornings are the worst!

Went to the doc 3/20, put me back on Plagyl for 7 days and Lialdia, start to taper off the pred.  Started Georges Aloe juice and will begin a proabotic after I stop the antibotic.

Diet since Feb:  Oatmeal/Cream of Wheat/Bananas/Chicken/rice/soup/crackers/eggs/breads/apples (no skin)/greek yogurt/reg yogurt/popsicles/water,water, more water!

Still, to this very minute turn I have bloody BMs...what gives?

Posted 3/26/2012 12:09 AM (GMT 0)
Hi welcome to the forum. IMO, your dose of prednisone is very low. Most people are started on at least 40 mg. I know you had IV steriods but I'm still surprised at the low amount. I had to stay on 40 mg at least two weeks. The Lialda is also a maintenace dose. When I am flaring I take 4 Lialda a day and only two when not flaring. A rectal med of some kind like Rowasa enemas would also be helpful. Unfortunately not everyone heals at the same rate. Be patient you are improving.
Posted 3/26/2012 12:21 AM (GMT 0)
Hard to say bc panco is tricky and most likely will extend ur bleedin. Oddly the colon heals toward the rectum. Unless u are very malnourished, not sure why ur GI didnt recommend a liquid diet or fasting to let your colon heal some. Panco is no joke.

You have alot of wise choices in ur diet but thats alot of food to be sending to an entire angry colon. Anything that makes it to your colon when ur bleedin can scrape against your walls and contribute to capillary bleeding.

Not trying to scare you or offer any medical advice. Just trying to give u some suggestions to take to ur next GI followup and discuss it with doc
Posted 3/26/2012 2:32 AM (GMT 0)
Thanks for the replies. some minor updates to the original posts. I started at 40mg pred a day starting around 2/25. Started tapering about 3 weeks ago. I was on a liquid diet during my hospiital stay. Around the 4th day they put me on bland diet. And that is what I've been doing since my release. May another few days of liquid diet. I could use to lose a few more pounds tongue 12 so far. The doc said I 'caught" this in the early stage. I hate to imagine the later stages!

I think a call to the doc this week is in order!

Btw. Love this site. So much info and quick learning!
Posted 3/26/2012 1:18 PM (GMT 0)
lildidge,

Welcome to the forum.

Sorry you are feeling so terrible.

I see a few problems:

1) you need probiotics and LOTS of them

2) your diet: Oatmeal/Cream of Wheat/Bananas/Chicken/rice/soup/crackers/eggs/breads/apples (no skin)/greek yogurt/reg yogurt/popsicles/

= gluten, dairy - both of which will cause problems for uc and then there's the food mis-combining which is a major factor here.

Here's some info on it:  http://cureforulcerativecolitis.com/step-1-methodology-to-eating

You could try: L-glutamine powder in a little water on an empty stomach to control the D.

 

Posted 3/26/2012 4:16 PM (GMT 0)
I would say, gluten and dairy MAY cause problem for some UC patients, because these foods are a little harder to digest, and things a healthy colon handles without issue MAY exacerbate UC symptoms. I think it is very unhelpful to saw that these things WILL cause problems. Overstated advice is still incorrect advice. Some people are too firm in their one-size-fits all convictions. Ditto for "food combining" proscriptions.

I have found that even with some healing (presumably the ulcerations) the tissue remains friable for some time. When I start to get semi-formed stool, I often get an increase in bleeding. I have found hydrocortisone enemas help with bleeding (and even more with urgency) - but this will only help bleeding upto the left colon. If the blood is darker and/or clotted, it is traveling from the right or transverse colon. Only oral meds are going to touch that. You will need to see if probiotics help - individual experience varies. Even if they don't right now, tray again when the colon seems a bit better.

Lots of Vit D is probably good advice. something to control diarrhea, whether supplement or medication, is likely to be useful too. As you introduce probiotics you may also need something to control gas at first.
Posted 3/27/2012 2:38 AM (GMT 0)
Another question...even tho I am still having bloody BMs, there is hardly no pain involved. If some foods; like dairy; was an issue, would I have pain AND everything else. Right now it is just urgency/the BIG D/and the blood.

I have asked my doc about diet/probiotics...of course his answer was like many others have had on this site, that diet and what you eat doesn't matter, until you find those foods that cause the flare (which at this point, I have no idea). As far as the probiotics, he said they may work a 'little' but doesn't hurt to try. Some work on some people, some do not...as with this disease, it is hit and miss.

One more...if all my blood work continues to come back with no issues, does extra vit D (or any other vitiamin) still play a part in getting to remission. I currently take a muliti vitiamin.

Don't shout at my doc...he spent alomost an hour with me in my last visit answering all my questions! Obviously, i missed a few and will be sure to add them to my list for my next visit in 3 weeks. BTW...if anyone has an iPhone or android phone, there is a free app called GI Monitor. It has some quirks to it, but is free. There are apps that cost per month, but the freebie is good for me. Check it out!

Thanks again for the replies, you all help me out one way or another!
Posted 3/27/2012 2:52 PM (GMT 0)
You should ask your doctor about rectal meds -- Rowasa works wonders for me and is the only thing that got rid of my bleeding. Bleeding is usually my first symptom to appear and one of the last to leave. You really have to be patient with this disease as hard as that is at times. Rowasa is a retention enema that you insert at bedtime and hold in until the morning...it's not as bad as it sounds. I hope you feel better soon.

I don't think extra vit. D would help you get to remission if your bloodwork comes back healthy, but no one really knows that at this point.
Posted 3/27/2012 6:47 PM (GMT 0)
I didn't stop seeing blood till 2 weeks after my third Remicade infusion. Even then, I went off ALL fiber and raw fruit and vegetables, and try things little by little. I'd stay away from oatmeal, bananas (unless very ripe) and apples. It just feels like fiber will "scratch" an irritated colon, causing it to bleed. I don't have any medical evidence to support this, just my gut instinct :)
Posted 3/29/2012 4:41 PM (GMT 0)
I did talk to the doc about rectal meds, he said since my entire colon is affected, and Liadia is a time release, it will work on the entire colon, as where the rectal meds, only go so far :)....so, he suggested not to do those, for now.

I have started on the probotics and aloe, and am feeling somewhat better.  Still have bloody BMs, but overall feeling is better, (other than the stress of my job).  I did have a small flare today, due to work.

I know each person is different, and i beleive my doc wants to try all the 'smaller' type meds, and if they don't work, keep going up until we find one that works.  I am at 15 mg of pred this week, and so far so good.

Thanks for all the great advice, i'm sure I'll be posting soon about something else!

Posted 3/29/2012 7:03 PM (GMT 0)
If your doc wanted to stick with the smaller type meds, he'd have you on rectals. And I'm sure you realise they're only meant to treat the lower part of the colon (rectum/sigmoid) and no further. The Lialda does the rest from in the sigmoid and above.

so...if you believe the doc...consider this...your flares will always involve the rectum, no matter how much has healed above. They start there, they end there, and sometimes only continue there....

So...push the doc for rectal meds..I would suggest Rowasa. Your goal is to stay off the pred forever if you can...at least that's what I'd love for you to have.

I'm not going to fight the issue....you will be remiss if you believe rectal meds won't help you.

q
Posted 4/3/2012 6:11 AM (GMT 0)
^^ you can ask for steroid suppositories or retention enemas to use in conjunction with he prednisone.
Foam enemas might be just the thing and seem easier to retain.
q
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