Back in a flare -have some questions

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gumby44
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Date Joined Nov 2007
Total Posts : 4096
   Posted 12/27/2007 11:49 PM (GMT -7)   
Hi there,
I'm miserable, and back on the dreaded Prednisone...which is why I'm online at 1:30 AM!!!! I have a question. I was on Prednisone and Pentasa for about a month, starting with 30mg of Prednisone, and slowly tapering. I ended the Prednisone on 11/30, and had my first three weeks of glorious remission. I met with my doctor, who said that now that was in remission, I should stay on the Pentasa, and could eat anything that I want, so I was sometwhat cautios, but I did eat Mexican food one night and lasagna another. So now I'm back to being a great big mess...lots of diarrhea, bloody mucus, pain, and pretty darn depressed.

I'm trying to figure out if I never really was in true remission, and it just took the three weeks for the steroid to totally clear out of my body, which then caused the flare, or if the doc was wrong and I never should have stopped the boring, boring low residue diet. I also asked about Probiotics, and he said they were expensive and unneccesary. I know there are a lot of you out there who strongly believe in diet and Probiotics. Just wondering what you think about the steriod theory. Also, while you are real sick with diarrhea from just about anything, what do you eat/drink to feel better?

Oh, I'm also having my husbands extended family coming in from out of town to visit until Jan, 3. They are a great bunch, but I'm sure I've been more stressed with the holidays and getting the house ready. I move from frantically cleaning to crying, or both at the same time (good 'Ol prednisone) Any advice would be appreciated
48 yr. old female, diagnosed with Crohn's Sept-Oct. 2007


Zanne
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Date Joined Apr 2005
Total Posts : 3763
   Posted 12/28/2007 3:07 AM (GMT -7)   
Lots of questions there. First, it does take time for prednisone to leave your body. How long depends on how long you've been on it. As far as diet, it is best to go slow. Don't over do the spicy or the high fiber foods until you know how you will react. You don't have to stick to a bland boring diet for the rest of your life, but you should take things slowly and try things one at a time to see how you tolerate them. Some people can eat lots of different foods, salads and spicy included, others need to keep things more mild and softer. We are all different. You will need to keep track of how you tolerate things and what works for you. And if you have a bit of a set back, go back to a bland diet for a few days to see if things calm down on their own. Some times just taking it easy in my diet and physically can calm things down. When I have gone too far in my diet I go to my "white food" diet for a few days. Rice, Mashed Potato, Toast, Fish, Eggs, Custard, Tapioca, Pasta, you get the picture. Those are my comfort, safe foods, you'll figure out your own.

Stress, Family and the Holidays! Oh what joy! I think most of us will agree that stress won't cause a flare, but it certainly will make things worse. I'm sure your Husbands family will be understanding that you aren't at your best. After all you've been Dx with CD and are coping with a flare. Let them help you and let things slide if possible, like cleaning. Over working your body is NOT going to help you get better.

As far as Probiotics, I can't really help you there. I only take them when I am on antibiotics. I have never found them to be that helpfull for me. But some people on here swear by them.

I hope you are feeling better soon.
Suzanne

CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


gumby44
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Date Joined Nov 2007
Total Posts : 4096
   Posted 12/28/2007 8:55 AM (GMT -7)   
Thanks Suzanne,
I agree that the "white foods" seem to be easiest to tolerate. I didn't get to sleep with the lousy Prednisone until 3:00 AM, but besides exhaustion, I think my D is slowing down! I'll take progress where I can get it! I tend to go a little crazy getting the house ready before company. I have two teens a dog and a cat, and the house never seems clean enough! But once everyone gets here, I'm able to relax. Thanks for your help!
48 yr. old female, diagnosed with Crohn's Sept-Oct. 2007


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 12/28/2007 12:30 PM (GMT -7)   
Gumby I just saw my GI a couple of weeks ago and we talked about this alot. He said that we should all be very careful with our diet and should always take some kind of maintainence med. I am now on a low residue diet and only take Asacol for my Crohns. If I get too adventerous with my diet I get sick right away. So if I were you, I would make a food diary and watch and see which foods irritate you and stay away from them. I also take probiotics every day and have seen alot of improvement with my stools. Less deposits and more firm deposits (deposits is a PB4 saying, HA). So watch your diet closely and remember to always take your meds. Good Luck and feel better soon.

Gail *Nanners*
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 12/28/2007 1:56 PM (GMT -7)   
Were you on the full dose, 4 grams, of Pentasa?

Daughter (20) Dx'd Crohn's 3/06. Misdiagnosed for two years, including by top pediatric Crohn's specialist as stress and needing more fiber but landed in hospital in 3/06 with cramps, vomiting, stricture. Now in remission with Entocort 3 mg (one pill), SCD multivitamin, yogurt, vit D3 1800IU, 900+ mg calcium, 50 mg B complex vit, 25 mg iron. No longer on SCD diet.   
 


Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 12/28/2007 7:12 PM (GMT -7)   
Interesting. Reminds me of my first year as a diagnosed IBD patient. I got my first remission fairly fast. And lost it just as quickly. Mine lasted nearly 5 weeks, then I ate pickled beets. I wouldn't see another for 15-16 months MINIMUM.
When you are starting your first treatments for our DD, remember, setbacks are the rule..
Eventually, it will get better. Since you did have a remission, hoever brief, you know its obtainable.
Some here have never had one.

Sincerely,
Matthew

gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4096
   Posted 12/29/2007 2:29 AM (GMT -7)   
Hi Thanks for the responses,
I was taking 9 250 mg Pentasa pills / day prior to the remission. Today and yesterday, I am back on 30mg of Prednisone and upped the Pentasa to 11/day. My doctor leaves a lot up to me...he told me I can increase the Pentasa "if I want to." He is very kind and says I know my own body, so I should decide how much Pred, Pentasa, etc to take. I like it that he's not a pompous doctor who demands his way, but I also feel lost and directionless sometimes. Yesterday, was one of my worst days ever! It felt like my intestines were in spasm, and I had to have small amounts of diarrhea every 20 minutes or so. I'm eating rice, jello, gatorade, etc. I have a house full of relatives and barely came out of my room! I'm trying to at least somewhat stabilize FAST, as I feel terrible about leaving my hubby with all the company. What else can I try??
49 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007
currently taking Pentasa 2750 mg- 9pills/day and on and off Prednisone for flares

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