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Ulcerative Colitis
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Posted 1/28/2009 4:43 PM (GMT 0)
Hi all. I feel like a total idiot! Everytime I go into a flare it feels like my very first one all over again, and I have been dealing with this stupid UC for 19 years. I get flustered at everything, im confused about what I should do, Im grouchy to my family, and I want to try everything that sounds even remotely possible to work. Im about a month into this flare. I have cut out as many carbs as I possibly can, started taking the VSL#3 and fish oil. I called my GI and, of course, the first thing he says is "get back on Pred." . I took Pred for about 2 years when I was first diagnosed and I absolutely HATE it. I dont think I can stress enough (at least to my family but you guys probably understand!) how bad I dont want to take it. Well, my hubby talked me into getting the prescription but I cant even make my self take it. GI says to take 40mg a day, so far I have taken 10mg twice. That was about 2 days ago and now my symptoms are worse than before. Can the pred. make it worse? Or is it because I took some then stopped? Also, im starving. I've cut back on eating just about everything except meat and I eat 1/2 a thing of yogurt with the vsl3 twice a day. Is the meat (steak & chicken)okay to eat? or should I find something else? Right now im so fustrated I just want to grab a bag of Doritos and crawl back into bed. I would love any advice. Thanks!

Lisa 

Posted 1/28/2009 4:47 PM (GMT 0)
I would try a liquid diet for awhile if you don't want to go to the prednisone. As for the meat, chicken is better than steak during a flare but you should be eating fish as that's the easiest meat to digest and the natural oils should help. Avoiding chips during a flare is also a good idea.
Posted 1/28/2009 5:13 PM (GMT 0)
Hey, I know what you mean after having this for so long that it can still confuse you! For some people steak will bother them because it's harder to digest so I do agree that maybe you should stick to chicken, fish, rice etc. Diet is so very individualistic. As for the pred, the only thing I think that can be happening is that even though you only took 2 doses, you can be having a rebound effect. I know when I was on the steroid enemas for a year and then off of them for a while, and if I have to start back on them, my body acts like it "craves" the stuff and if I stop them too soon my body is saying whoa wait a minute - give that back! What meds are you on right now and have you ever tried rectal meds?
Posted 1/28/2009 5:29 PM (GMT 0)
Yes, I have used the Rowasa enemas. They seemed to work okay but not great. I have also tried Asacol and Colazol, neither worked, and Pentasa, which worked great the first time I took it but the second time didnt seem to have much effect. So right now the only thing im taking is the vsl3 and fish oil. I have been taking 2 packects of vsl3/day and 2 fish oil tablets, is that enought or should I do more? What kind of rice is okay to eat? I also think I might be alittle lactose intolerant but the yogurt is the only thing I can think of to mix the vsl with. Any other suggestions?
Thanks, Lisa

P.S. I was kidding about the Doritos, I know they would kill me right now!!!
Posted 1/28/2009 5:32 PM (GMT 0)
Try cortifoam ... Hope it works :)

I think the longer we stay sick the harder it gets...

Posted 1/28/2009 6:02 PM (GMT 0)

Good luck to you - info on yogurt...

* Bacterial lactase from live active cultures in yogurt survives transit through the stomach allowing digestion of lactose present in yogurt. This enables lactose-deficient individuals to tolerate the lactose present in yogurt in moderate amounts, (8 to 16 oz) with fewer or no symptoms. (New England Journal of Medicine: 310:1-3,1984).

Just be sure to get the yogurt with LIVE bateria - it is good for you.

ElaineNY

Posted 1/28/2009 6:21 PM (GMT 0)
Try taking 4 or 5 packets of VSL3 per day. I know it gets expensive but it works wonders. You will never get enough bacteria from just eating yogurt
Posted 1/28/2009 7:31 PM (GMT 0)

MAD - I understand getting good bacteria but what happens if we don't?  Will that heal my UC?  Stop the bleeding?  Just wish I knew!

ElaineNY

Posted 1/28/2009 7:42 PM (GMT 0)

kops2da said...
MAD - I understand getting good bacteria but what happens if we don't? Will that heal my UC? Stop the bleeding? Just wish I knew!

ElaineNY

Well depends on what "good bacteria" you are talking about. The good bacteria from human feces can heal your UC and stop the bleeding and maybe if your lucky cure your disease. You have to be in total remission before introducing the bacteria through a fecal transplant so they can implant themselves permanently.

If your talking about "good bacteria" from VSL3 then yes it can also heal your UC and stop the bleeding but will never cure your disease. You will need to continue taking it everyday. These types of manufactured probiotics do not have the ability to implant themselves in your colon permanently.
Posted 1/28/2009 7:48 PM (GMT 0)
Encouraging about the VSL3 but I have heard other here say it did nothing for them...why does it work in some and not others? I do take two very good probiotics Health Trinity ($90.00 for 60 caps + I take ruteri)I've not had one GI doc (gone to 3 so far) ever recommend or even discuss VSL3...I will ask my new GI tomorrow about it.
Posted 1/28/2009 7:49 PM (GMT 0)
MAD. Encouraging about the VSL3 but I have heard other here say it did nothing for them...why does it work in some and not others? I do take two very good probiotics Health Trinity ($90.00 for 60 caps + I take ruteri)I've not had one GI doc (gone to 3 so far) ever recommend or even discuss VSL3...I will ask my new GI tomorrow about it.
Posted 1/28/2009 7:54 PM (GMT 0)

Well, I tried two others - Primal Defense which is supposed to be one of the best and Phillips new one.  My doctor gave me sample of Align and I went back to it because the others did not do anything I could see but give me LOTS of gas.  That is why I asked about bleeding.  Align has stopped my diarrhea and that is great but I still have bleeding and mucous.

ElaineNY

Posted 1/28/2009 8:15 PM (GMT 0)

bbc said...
Encouraging about the VSL3 but I have heard other here say it did nothing for them...why does it work in some and not others? I do take two very good probiotics Health Trinity ($90.00 for 60 caps + I take ruteri)I've not had one GI doc (gone to 3 so far) ever recommend or even discuss VSL3...I will ask my new GI tomorrow about it.

Well i don't know why it does nothing for some, perhaps they are not taking enough? VSL3 is actually the only manufactured probiotic that has gone through many vigorous testing and trials that are documented and have proven results in 85% of patients tested.

Lots of info on these studies for VSL3 can be found online, here’s just one of the.

http://www.hospitalpharma.com/PressReleases/pressrel.asp?ROW_id=380
Posted 1/28/2009 8:20 PM (GMT 0)
Oh and another thing, Docs won't tell you about VSL3 because that’s not what they use for therapy. That’s exactly what my GI told me. My GI Doctor discussed it with me only after i brought it up. Then he tells me he was involved with some clinical trials with VSL3 and it seems to work. Go figure!
Posted 1/28/2009 8:26 PM (GMT 0)
Keeping in mind, what works for some doesn't always work for others.

:)
Posted 1/28/2009 9:25 PM (GMT 0)
Red, what kind of rice is good? Is it just the plain white rice or brown rice? What about the flavored rice, like Rice-A-Roni stuff?
Posted 1/28/2009 10:10 PM (GMT 0)
I'm not particular about what rice I eat as long as it is natural. I try to stay away from Rice a Roni. Some of its packaged rice contains things like corn syrup and monosodium glutamate as well as other not-so-good ingredients. Rice containing turmeric, an anti-inflammatory ingredient, is good.
Posted 1/28/2009 10:12 PM (GMT 0)

MAD said...


The good bacteria from human feces can heal your UC and stop the bleeding and maybe if your lucky cure your disease. You have to be in total remission before introducing the bacteria through a fecal transplant so they can implant themselves permanently.

Didn't Borody's papers use subjects that had been resistant to other therapies and who were NOT in remission?  If we were on remission from some other treatment, I can't imagine resorting to fecal bacteriotherapy.  Not that I am squeemish about it or about helminthic theraoy, fo which I am a big fan already.

Posted 1/28/2009 10:51 PM (GMT 0)
Regarding the meats, it seems that if it is something your body is used to, it's responds OK. But if you don't eat red meat generally then you try to eat some, it will tear you up. That's just anecdotal experience and observations (myself and other people).
Posted 1/28/2009 11:04 PM (GMT 0)
I personally like white rice but I imagine you can eat others but like Subdued said, I don't think the Rice a Roni rice would be a good choice. You know what's really good? If you like cream of Mushroom, chicken etc then you combine a can of soup (doesn't matter really to tell the truth) with a can of white rice (Minute Rice) and a can of water if you are using a cream based soup - 1/2 can if not and heat on the stove. I got that recipe from my MIL a long time ago and she calls it souped up rice. It's great to have with broiled or baked chicken or fish.
Posted 1/29/2009 4:56 AM (GMT 0)
If you are in a flare, white rice is better because it doesn't have the husk that brown rice does.
When buying yogurt try for yogurts that are all natural without the preservatives and gelling agents especially carageenan. Carageenan should be avoided by everyone especially people with intestinal problems...it's evil...
Same with the prepackaged rice...avoid the not natural stuff. Add lots of garlic and turmeric.
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