From 15-20 per day to 1-2 a week [or now my guts are "too" healed]

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Date Joined Nov 2003
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   Posted 9/18/2008 5:56 PM (GMT -6)   
Let's see - diarrhea for 25+ years. Remicade induces intestinal healing. Imuran keeps CD in remission. AS and lupus running rampant and I am on and off prednisone these last 4 months. See my GI yesterday and he prescribes Miralax because I am not only able to have a BM once or twice a week. He said that all the prednisone has healed my guts "too" much.
I can see some of you shaking your heads wondering why I am complaining. I'm not complaining. It's just frustration....wishing for a happy medium...
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.

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Date Joined Apr 2008
Total Posts : 1753
   Posted 9/18/2008 6:44 PM (GMT -6)   
Too healed? What did he mean by that exactly?
I'm sorry to hear about the lupus..I can't imagine what that is like...
I hope you feel better and not in a 'too much' way. Whatever that means :(
20 years old, Diagnosed with severe Crohn's and colitis in May of 2008.
Currently taking:
Prednisone, pentasa, alinia, bentyl, prilosec, tandem plus, and the occasional ultracet
Surgery for ectopic pregnancy(very possibly due to Crohn's inflammation) in July of 2008.
Due to start Imuran September 17 depending on blood results.

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Date Joined Mar 2006
Total Posts : 1354
   Posted 9/18/2008 7:55 PM (GMT -6)   
"Too healed" thats a new one isnt it! I hope you do find your happy medium too.

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Date Joined Mar 2007
Total Posts : 4527
   Posted 9/18/2008 8:10 PM (GMT -6)   
Hi Ides wow so your too healed. I started calcium with magnesium and taking one a day supposed to help the BM's move along depending on how much a person takes but not for people who are diabectic or have heart problems without a Dr's say . So your not narrowed or obstructed? Just hoping that you will get some relief and want you to know I am thinking of you .lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still gail

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Date Joined Jan 2007
Total Posts : 3200
   Posted 9/18/2008 8:45 PM (GMT -6)   
Ides, I feel for you. Sometimes when the diarrhea goes, and it becomes a struggle to go, I feel blah too!!!
Lets hope we all find our happy medium LOL

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis

Laughter is the brush that sweeps the cobwebs from our hearts

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Date Joined Jul 2005
Total Posts : 733
   Posted 9/18/2008 9:02 PM (GMT -6)   
I'm sorry you can't find a happy medium! I always joke with my mom about trading "poo points"... I have too many trips to the lou, and she too few, so I figure if we had a way to establish points - we could just redistribute the wealth and no one would have TOO MUCH of anything. If only, right?

Question though... regarding your Prednisone and avascular necrosis... My brother has and has had two hip replacement surgeries because of it (he's only 32). There's only two things that the docs have ever put forth as "causes" for the - #1 - Steroids (he received cortisone shots every summer because he would get poison ivy so bad he would swell into a giant ball) and #2 - smoking cigarettes. Because of this family history of, my doc won't put me on steroids unless it is an ABSOLUTE emergency, and even then he demands a fast and harsh taper to get me off of them.

Has your doc ever expressed any concern about the prednisone being good for your crohn's but bad for your or other troubles?

It's weird how so many of these diseases are connected and intertwined through genetics... and a fine line we walk in appeasing one disease without angering another...

Sending good thoughts your way...
26f, dx'd CD July '05 after 6 fistula/abscess surgeries
Currently running on Humira and Hope.
(miscarried at 13 weeks, now waiting to heal before trying again)

"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."

~Marianne Williamson

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Date Joined Nov 2003
Total Posts : 7056
   Posted 9/18/2008 11:48 PM (GMT -6)   
To anyones knowledge, I don't have any narrowing, strictures or obstructions. My GI was implying that my intestines react powerfully to prednisone. He said that prednisone also pulls fluid from the intestines thereby firming things up.

To patientspiders - YES, all my doctors are very concerned about prescribing or shooting me with steroids because of my avascular necrosis. The down side of not doing the pred or getting the joint injections is I have no mobility or quality of life. So I can spend my time lying in bed or on the sofa in pain of do the 'roids and get on with life. It is never an easy decision but for the time being I am choosing mobility and pain relief over possible complications in the future.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.

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Date Joined Sep 2005
Total Posts : 10404
   Posted 9/19/2008 1:24 AM (GMT -6)   
Ides, that must be really uncomfortable. I'm sorry.

And I don't blame you for choosing quality of life. Hey, any of us could be hit by a bus tomorrow...
Co-Moderator Crohn's Forum.

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 9/19/2008 9:20 AM (GMT -6)   
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.

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Date Joined Jul 2006
Total Posts : 6927
   Posted 9/19/2008 9:43 AM (GMT -6)   
C hurts too...
Forum Co-moderator - Crohn's Disease
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
Make sure your suffering has meaning...
All suggestions/options/opinions are caveated with please consult with your local health care provider...

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Date Joined Mar 2006
Total Posts : 1034
   Posted 9/19/2008 8:26 PM (GMT -6)   
1-2 per week is classified by constipation, using the american standard. truly you should go at least once per day. according to old skool indian medicine, you should go after every meal, so 3 times per day. makes sense to me. your body needs to make room for the food it just ate, so it is normal to go like half an hour after you eat and first thing in the morning. so i say 3-5 per day non D is normal. that is where i am and i'll take it. having CD for so long, i'm used to going several times a day. i am glad it is under 10 and i am no longer incontinent. i think that was the worst part. my docs say it is the stricture in the rectum that is giving me bowel control, not healing of my intestines. i beg to differ....
Crazy Harry

Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07

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Date Joined Jun 2008
Total Posts : 1058
   Posted 9/20/2008 1:18 AM (GMT -6)   
Apologies in advance if this is unacceptable. Would you consider trying turmeric capsules and then tapering off pred? Turmeric may be able to maintain the healing of your gut and allow you to taper off pred. It is often sold as a combination of bromelain and turmeric for the purpose of helping joint pain. It is a good anti-inflammatory agent and is known to control bowel spasms. It seems to me that it would be worth trying, since it does not have the adverse side effects that the pred has, especially in your case. I don't know if it can give you the mobility that pred does, but it might, or it might in combination with something like celebrex. I don't want to minimize your troubles, but the pred seems like a bad solution to me.
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