Apprehension : Dred the PRED

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redspot321
Regular Member


Date Joined Jan 2006
Total Posts : 303
   Posted 6/11/2008 8:26 PM (GMT -7)   
Quick History for everyone:
 
Diagnosed 2005 CD in the T. Ilieum ( obstruction)
63cm Resection Feb 08 (perferation)
CD Back in FULL force 11 weeks post op. (obstruction)
 
 
Since my most recent obstruction in May I have been on Prednisone I started at 60mg and have weaned to 10mg with the help of LDN (Low dose naltrexone) Without LDN I was having  6-10 watery BM's a day and severe RLQ pain on 15 mg of pred. LDN took the pain away and now I have only 1-2 BM's a day.
 
 
Im now on 10mg of pred and 4.5mg of LDN. For the first few weeks I felt perfect. Over the past week I have been having some slight RLQ discomfort and irregular stools. Nothing severe. Im 100% confident this has been brought on by stress.
 
 
My Concerns are
#1 How long can I maintain 10mg of PRED without damaging my body? Im afariad to continue to wean ( I think this may be most of my problem) and at the same time Im deathly afaraid of Prednisone. It makes me crazy...... Its a horrible cycle of RLQ pain, anxiety, and apprehension. What dosage of PRED is considered safe?
 
#2 My left Hip KILLS me when I walk, whats the chances of me having vascular issues? Im 29yo?
 
Im at the point where Im considering a 100% liquid diet for 2 weeks and wean off the pred completely. But that involves a lot of sugar from the ensure drinks and such = bacterial growth...This disease sucks.
 
Thanks for your input.
 


29 YO Male
 
-CD diagnosed in 2005 illieum
-63cm bowel resection in Feb 08
-Steroid dependant following surgery
- LDN Naltrexone started May 08 been a happy man since!!


Robert P
Regular Member


Date Joined Apr 2005
Total Posts : 127
   Posted 6/11/2008 9:02 PM (GMT -7)   
Sorry redspot, you're right it does suck.

Highly recommend AbsorbPlus over any other liquid diet/supplement. I'm guessing it's more expensive than Ensure but worth every penny.

You can learn about it by checking out the books in the resource directory of this forum, the IBD Remission Diet and Listen to Your Gut. I have both and can't recommend them enough. If you're considering the liquid diet then you NEED to read the IBD Remission Diet.

As for the apprehension/fear also highly recommend you take some time, doesn't take that long with the free instructional videos, to learn EFT (Emotional Freedom Technique). You can find more info at www.emofree.com, www.tapping.com, and www.tryitoneverything.com.

Have no doubt both suggestions will help as it has me. Let me know how it goes.

Robert
Robert

Dx Crohn's 1999; Started Flagyl 6/8/08 (500mg 3/day) in an effort to eliminate a persistent perianal fistula.  Aside from that have been drug free for a long time thanks to a number of lifestyle changes, much of which was learned from the Listen to Your Gut book.

"Coming together is a beginning.
Keeping together is progress.
Working together is success."
- John C. Maxwell


Illini
Regular Member


Date Joined Dec 2007
Total Posts : 298
   Posted 6/11/2008 9:35 PM (GMT -7)   
Can't comment on the other questions. But thought I'd say that if you're going to try the liquid diet, you would be better off using something other than Ensure. The high sugar content can also cause bloating and might make you more uncomfortable. Ensure Plus has less sugar than regular Ensure, and has more calories per bottle so you drink fewer per day. Probably a better choice.

I have read The IBD Remission Diet. It's worth reading though I do not use her product because I think it's too expensive. A polymeric formula is OK and much cheaper.

I use a formula called Nutren 1.5. It has 40% fat versus about 20% for Ensure so far less sugar (Ensure Plus is 30% fat). You might be able to find it at a pharmacy or medical supply store. I live in a smallish town so I order it off the web. Only thing to be wary of is that a liquid diet will probably cause D but at least in my case I still only have 1 BM a day without discomfort.
July 2007 Drug-Induced Liver Injury
January 2008 Crohn's Ileitis
Currently trying...
Enteral Nutrition, Omega-3 (Flax Oil and Fish Oil), VSL#3, Vitamin E


Robert P
Regular Member


Date Joined Apr 2005
Total Posts : 127
   Posted 6/11/2008 10:47 PM (GMT -7)   
Illini, agree with the cost being high. It's just a shame that our health care system and the insurance companies haven't caught up with the fact that an ouce of prevention is worth a pound of cure and have started covering these sort of things rather than paying the hundreds or thousands of dollars for the drugs with so many side effects we have to take more drugs to counter them because we don't use the holistic approach in the first place.
 
The Absorb Plus cost $53.xx USD per tub that contains 10 servings.  If you're in the continental US the shipping is free for orders of $300 or more and you get a 15% discount for orders of $350 or more.  So, you order 7 tubs, shipping is free in the continental US and the cost comes down to $45.86 per tub.   That's approximately $4.60/shake plus any additional ingredients such as flax oil, etc if you add those. 
 
That's about 370 calories, give or take about 5 depending on which flavor you use, if you don't add anything other than water.
 
So, if you're existing on this alone and targeting a 2000 calorie diet that's 5.4 shakes / day or $27.60 ($4.60 x 6) / day for an approximately 2000 calorie, elemental diet of a quality that just can't be beat from what I've seen on the market today.
 
Depending on your budget for food $28 may be high or it may be low, it's just a matter of perspective but the fact that an elemental diet has been as successful, if not slightly more effective, in producing remission than Steroids and has no side effects it has a value much higher than the dollar value when compared to those other products IMHO.
 
I've only used Absorb Plus by itself for a couple of stretches around a week in length over the past 2-3 years, otherwise I use it as a substituete for one meal a day, more if my symptoms warrant it.  I'm willing to sacrifice in other areas in order to be able to afford that but that's a personal decision and comes down to how much your health is worth to you.
 
Having said that I don't want to be misunderstood as to be saying that Absorb Plus in and of itself is the answer to everything and you'll be off your meds in no time.  There have been people who have expressed that it didn't agree with them but I believe those have been few.  It's just one tool in a holistic approach to what we call our healing journey but like anything else it has it's weaknesses (sure I'd be happier if it were less expensive but in order to get that they'd have to compromise on the quality and I wouldn't want them to do that) and it's not for everyone.
 
My hope is that this info helps others as much as I feel the Absorb Plus and Jini's books and resources have helped me (no I'm not being compensated for saying this or anything else for that matter).
 
In Health,
Robert


Robert

Dx Crohn's 1999; Started Flagyl 6/8/08 (500mg 3/day) in an effort to eliminate a persistent perianal fistula.  Aside from that have been drug free for a long time thanks to a number of lifestyle changes, much of which was learned from the Listen to Your Gut book.

"Coming together is a beginning.
Keeping together is progress.
Working together is success."
- John C. Maxwell

Post Edited (Robert P) : 6/12/2008 12:11:35 AM (GMT-6)

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