is there a way without prednisone?

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kickboxer
Regular Member


Date Joined Sep 2007
Total Posts : 123
   Posted 5/19/2008 4:17 AM (GMT -7)   
Is it possible to get out of a flare without having to use prednisone? Can you wait out a flare or will that just make it progressively worse until you get a round of prednisone?
VSL#3
Progressive - Calcium and Magnesium supplement
FibreSmart - fibre supplement
New Chapter Organics - Unbound Energy, Multivitamins


Pooie1981
Regular Member


Date Joined Mar 2008
Total Posts : 274
   Posted 5/19/2008 4:50 AM (GMT -7)   
I found Endocort helped me more than the Prednisone did and I am pretty sure its more safe to take.
Jenn 26/female
Ulcerative Colitis Diagnosed May 2004
Sulfasalazine 500MG 4 times per day
Daily Vitamin for Women and Folic Acid


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 5/19/2008 5:38 AM (GMT -7)   
Yes there is a way! It's a liquid diet, referred to as "enteral nutrition", and it is considered as effective as prednisone in stopping a flare. It allows the intestines to rest and heal. "Writer" here on the forum is the resident expert and can answer all your questions. Maybe she'll see your post. "Illini" here on the forum has been doing it and my son did it for 10 days last October. (My son was experiencing a mild or mini flare. I am told it usually takes much longer. Our pediatric GI told us it would take a minimum of 6 weeks. Thankfully he was wrong.) We used a product found online called Crohn's Clear Elemental Shake, which Writer told me is in actuality a "semi-elemental formula." In any case, something like this (Writer can recommend others) would imo be better than Ensure or Boost because it's considered easier to digest and has fructose as its sweetener. My son said it "felt better in his stomach" than Boost.

It is *extremely* tough to do, but if your motivation is to avoid prednisone (and that was my son's motivation), you can do it! My son had been on pred. one time prior, and he was NOT going back on it. Hated it.

By the way, if you do decide to do it, there have been some great threads here in the past of other folks who have done it. Besides the prepared formulas that are recommended for this, folks have shared their clear liquid additions; like chicken, beef and vegetable broth, for instance, and probably others I can't think of. This would be a healthy way to give yourself some variety. If you make a post about it, folks will probably come out of the woodwork with ideas for you!

Good luck! Hope this helps!
EMom
Mother to 16 year old boy diagnosed in June, 2007.
Currently taking Asacol, omega 3s, digestive enzymes, probiotics, iron, vit. C, calcium w/D3 and a good multivitamin.
Started The Maker's Diet in early September. Gradually learning/using more SCD recipes, too! (cooking challenged)


Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 5/19/2008 6:49 AM (GMT -7)   
Hi,

EMom's right, if you want to avoid prednisone, you can try total enteral nutrition (i.e., special liquid diets used instead of regular food for a few weeks to induce remission). In kids, it's just as effective as steroids. In adults, not quite as effective, but can still put about 50% of people into remission. The disadvantage is having to stick with a special diet for a few weeks. There are many enteral nutrition formulas available (divided by type into elemental, semi-elemental, and polymeric formulas), and they all seem to work about the same.

Jen77
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Date Joined Mar 2006
Total Posts : 2691
   Posted 5/19/2008 8:33 AM (GMT -7)   
I honestly think it also depends on how bad off you are. I've gotten through many a small flare up without going on steroids. Mainly going on a liquid diet for a few days, and taking it easy.

But I think there are some flares that just can't be dealt with that way. I'm in one of those right now. Over a few months the inflammation in my body just got huge, and I was having joint problems, and swelling, in in addition to the intestinal part of the flare. I was going down hill fast, and I know just going on a liquid diet this time wouldn't have worked!

So really I think it just depends.
~Jennifer
 
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Predisone: tapered to 30 mg, Asacol, Questran, Toprol XL (for high blood pressure).


TraciZ
Regular Member


Date Joined Aug 2007
Total Posts : 255
   Posted 5/19/2008 8:36 AM (GMT -7)   
Hi,
I am currently refusing to take prednisone. I switched from Lialda to Colazal (as of 5/9) and have begun taking "Phosphatidylcholine" (420 mgs) 4 capsules once/day starting last Friday. I'm feeling great! I just put a detailed post on the UC forum citing research about this supplement. Good luck!
Tressa 34 (F)
Not sure of my dx- currently UC, but with skip lesions. Bloodwork is inconclusive for UC & Crohn's. Colonoscopy shows ulceration in terminal ileum and descending colon
Colazal 3X3/day
Lialda upped to 4/day,
Colazal 3X3/day
Phosphatidylcholine 4 (420 mg capsules) once/day


wednesday77
Regular Member


Date Joined Oct 2007
Total Posts : 390
   Posted 5/19/2008 10:16 PM (GMT -7)   

I started to have mild symptoms of a flare 9 weeks ago and weent to my dr to see if there was anything I could do to kind of "cut it off at the pass" before I went into a full on flare - he did tons of tests and a little bit of this and a little bit of that (suppositories, tried Lialda, I changed my diet to very bland, no alcohol, no caffiene, no artificial sweetner) - for me what ended up happening was that I went into a full on flare and had an abcess that seemed to be the biggest problem.  So I ended up in the hospital for 2 weeks on pain meds and antibiotics.  I also got my first dose of Remicade.  I am still out of work, low-grade fevers and no energy, I sleep all the time and spend the rest of the time in the tub.

So for me it seems that even with different medicine it will take almost 3 months to get over this (hopefully) - I know if I had taken Prednisone I would have been better within a week or 2 - but it is such an evil drug and is really doing a number on my bones (I have osteopenia and the beginning of osteoporosis).  So basically I don't think there was any one thing for me that reversed my flare and helped me back into remission.  If ANYONE has a suggestion on how to get/stay in remission I would love to hear.

 

Good luck and God bless!

Female

Crohn's Colitis

 


Illini
Regular Member


Date Joined Dec 2007
Total Posts : 298
   Posted 5/20/2008 8:43 AM (GMT -7)   
As EMom said, I was able to get into remission using exclusive enteral nutrition. I "ate" only Nutren 1.5 and drank only water. It requires a lot of willpower... But I noticed a difference within days. It kept me in remission for two months while I was doing it, but three weeks after I started eating again, my inflammatory markers went up slightly. This is probably because I'm not on a maintenance drug. Right now I'm trying to find a compromise between "real food" and cans that will keep me in remission and I'm also considering tryind a different formula.

I believe my case is mild right now, plus I do A LOT of monitoring--lately a blood test every month, and I keep a detailed diary of everything I eat, how I feel, what the BM's are like, and so on. I feel comfortable with this strategy at this point in my life/disease, and my doctors are fully aware of what I am doing. I am a bit uncomfortable recommending EN, and forgoing medication, to someone who is prone to very severe disease (not sure if that applies). Talk with your doctor about it. Studies have shown EN helps your gut heal and it decreases intestinal permeability. You still get those benefits if you try it in conjunction with medication.


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, Folic Acid, Psyllium


Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2691
   Posted 5/20/2008 9:16 AM (GMT -7)   
Also, wanted to add, sometimes mild disease can creep up and get more sever on you. I've always been considered as someone with "mild" Crohn's. Even with a sever GI bleed, and a rectal fistula. After all I was able to maintain a reallly good remission (for the most part, with very minor flares here and there) for 2 years. Having JUST took Asacol. So it was quite the surprise for me when I went in to a really bad flare up.

I think it's very important to really pay attention to all the signs your body is giving you, and don't always depend on what worked in the past to work in the future. It's such an unpredictable disease. I was always fearful and dreaded steroids. But I'm glad I'm taking them. Had I refused and just stuck with a liquid diet, I think I'd probably be long in the hospital by now. So I think it's just best to be cautious!
~Jennifer
 
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Prednisone: tapered to 35 mg, Asacol, Questran, Toprol XL (for high blood pressure).


Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 5/20/2008 10:15 AM (GMT -7)   
It's difficult to generalize about liquid diets. Just because a flare is serious does not necessarily mean it will not respond to enteral nutrition. The fact that this was a potential treatment for Crohn's disease was discovered when it was given to some patients with Crohn's who were very sick and awaiting surgery, and then some of them didn't need surgery anymore, and when it was used successfully in other patients who were not responding or who had stopped responding to the treatments available at that time (steroids and immunomodulating drugs such as 6-mp and methotrexate). Most recently, an interesting case was reported in which enteral nutrition induced remission in a patient who had stopped responding to steroids, couldn't take immunomodulators because of adverse reactions, and had stopped responding to Remicade. She developed psoriasis and scleritis (with loss of sight) while taking Remicade, and both of those conditions also cleared up on enteral nutrition (her sight returned in three weeks). Thereafter, she was able to maintain remission using supplemental enteral nutrition. So severe disease is not necessarily a contraindication. However, as other posters have made clear, aggressive disease requires careful follow-up and shouldn't be ignored. Like all therapies, enteral nutrition does not work for everyone, and progress needs to be monitored. Someone who tries it and does not start improving within the first 10 days to two weeks may need to begin another treatment. It can be an excellent alternative to steroids for some people, but if it doesn't work you need to consider other therapies, just as you would do if a drug therapy didn't work.

lilturbo
Regular Member


Date Joined Feb 2008
Total Posts : 298
   Posted 5/20/2008 4:02 PM (GMT -7)   
Writer-is Peptamen in the "enternal nutrition" family? If so, which one? Which liquid, in your opinion, is the best to take? Thanx!
turboemma.blogspot.com/


Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 5/21/2008 5:54 AM (GMT -7)   
lilturbo,

Yes, it is. It is a semi-elemental formula. People seem to do very well with it. But I don't have one I'd recommend more than another. They all seem to work about the same. The odd thing is, some people will respond to one formula but not to another, but there doesn't seem to be any way of predicting that in advance. You just have to try one and see.

yellowroseoftexas
Regular Member


Date Joined Jun 2007
Total Posts : 45
   Posted 5/21/2008 7:08 AM (GMT -7)   
hi Kickboxer
 
I have not gotten back to this site for quite some time. 
 
I am 36, and have never taken any prescribtion drug for my Crohn's.  Well, that's not totally true, I took lots while they were trying to figure out what was wrong with me.  However, since diagnosis I haven't.
 
I have had several flare ups, it is the nature of the disease and have dealt with each and everyone through diet and lifestyle changes.  I have never had a flare to date that has caused me to consider taking steriods - until last month.
 
I went to the dentist I had been using for years and although I had made it known and clear that I could not have amalgom fillings (due to the mercury content), I was given two amalgom fillings and the assistant did a very poor job on suction so had a lot in my mouth!  The evening of said visit i starting throwing up, it continued for over 24 hours before I was taken to the hospital and given fluids and morphine and anti-semitics.  Within three weeks of that I was having periods of intense, I mean the most intense pain I have had ever, pain that would lead to throwing up that would lead to a trip to the hospital for morphine.  This has happened twice.  I was seriously thinking I couldn't get through it.
 
My CRP went up from 7 to 35.  My hemoglobin went from 12.3 to 9.6.  I was feeling like total crap.
 
Now, just two weeks later!, with lifestyle and diet change, I have had no more intense pain, no trips to hospital my crp is down to 5.3 and my hem is up to 11.8.
 
I honestly and truthfully believe that the major factor in my recovery is this:
 
treating yourself. com
 
type it into google for yourself.  Look at the research - QUESTION what you have been told about the best treatment for this disease.
 
the best flare-up diet I have come across was from Cambridge university.  I will have to look it up, but it was basically very boilded white rice, very well cooked (soft) chicken or 'light' meat. with very well steamed (mushy) brocolli.  There was more to it than that, but that is what I remember and that is what I do for as many days as it takes to get me back on top.  I cook with extra virgin olive oil (add a little seasme oil for iron) and use salt so my body can easily absorp fluids.
 
I am in the process of creating a myspace page called
 
healyourselfofcrohns
 
It will be a few weeks before it is all together, but feel free to contact me on that site.
 
All the best!
Amy

Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2691
   Posted 5/21/2008 8:20 AM (GMT -7)   
I'm not saying it couldn't help a serious flare. That's a personal decision that someone has to make with their doctor though. Personally, as bad off as my flare was this month, I didn't want to play around with it. Or even wait another 10 days to see if it would work, I was swelling up in my joints and lip! Besides losing pounds every day, and living in the bathroom. With blood work coming back with a sed rate of 76! For "me" that was beyond liquid diets!

So I think that's just something everyone has to decide for themselves, based on many things, with their doctors. This disease is so different for everyone also. What works for some doesn't always work for others.


~Jennifer
 
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Prednisone: tapered to 35 mg, Asacol, Questran, Toprol XL (for high blood pressure).


kickboxer
Regular Member


Date Joined Sep 2007
Total Posts : 123
   Posted 5/21/2008 9:18 AM (GMT -7)   

Thank you all for your replies. My diagnosis isn't very clear. My doctor seems to thinks it's either UC or crohn's-colitis, but can't say for sure. He says it doesn't really matter which because both are generally treated the same.

 In terms of severity of disease I think i'm more on the mild to moderate end of the spectrum. I say this because between flares I generally feel pretty normal, one solid bowel movement every morning usually not many problems other than that unless I decide to have some drinks or eat too much. I take salofalk but am not sure how effective it is.

I understand sometimes steroids are necessary but I was just trying to see if there was another way without the steroids. Is this enteral nutrition, or whatever its called, as effective for both crohn's and colitis or more so for one of the two?

I have a question for those who have used enteral nutrition before. How much weight did you lose during the weeks that you were on it? I would imagine that being on a liquid diet would result in a considerable loss in weight?

To AMY, thank you for the link, I will be sure to check out your website once it is up and running.

Thanks again to all, this really is the only place where I feel I can talk to anyone about these issues. Even the gi's don't fully understand the issues we go through.


VSL#3
Progressive - Calcium and Magnesium supplement
FibreSmart - fibre supplement
New Chapter Organics - Unbound Energy, Multivitamins


Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2691
   Posted 5/21/2008 9:40 AM (GMT -7)   
When I do a liquid diet I will usually drink Ensure or Boost, which is higher calories. That helps with the weight loss. Although a flare can make you drop the weight pretty quickly regardless. I lost 10 pounds in one week, and I felt I was eating normally!
~Jennifer
 
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Prednisone: tapered to 35 mg, Asacol, Questran, Toprol XL (for high blood pressure).


Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 5/21/2008 9:59 AM (GMT -7)   
Jen,

I agree with you, the decision on what to try is a very individual one. I don't want to promote one treatment more than another, just to make sure people are aware of a treatment that often isn't mentioned as an alternative.

Kick boxer,

Unfortunately, enteral nutrition doesn't work for ulcerative colitis. It doesn't hurt, you can use it to gain weight, but it doesn't have an anti-inflammatory effect the way it does in Crohn's. Also unfortunately, it tends to be less effective in Crohn's colitis then in small intestinal Crohn's or mixed small and large intestinal disease. It does work for some people with Crohn's colitis, but the odds aren't as good as they are for other patterns of disease.

Regarding weight loss, you need to drink enough of whatever formula you choose so that you don't lose weight, and so that you gain weight if that is necessary. If you need 2000 calories per day of regular food to maintain your weight, then you will need to drink 2000 calories per day of formula. If you are losing weight because of Crohn's, you may need extra calories to turn that around. If a enteral nutrition works for you, it should improve your ability to absorb nutrients so that you stop losing weight.
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