Re: Drugs for Crohn's Flare combined with SCD??

[Guest guest]

Sometimes you need a little more than just the diet, if it's bloating, gas and D I use pro-biotics, acidolophis, s. boulardii and Enterogermina several times a day and that does the trick. If it's a serious flare-up with bleeding, fever and joint pain I use prednisone which works quickly and stops all the symptoms and I get off of it as quickly as possible. The other drugs make me deathly ill. Everyone is different though.

Ann,

Living in Italy

Undiagnosed Crohn's since 1977 Diagnosed 15 years

Sacroiliitis 25 years

Rheumatoid arthritis 25 years

Pyoderma Gangronosum 2 years

SCD since July, 2008

Meds: Tapering Prednisone for PG

To: BTVC-SCD Sent: Wednesday, January 21, 2009 8:46:05 PMSubject: Drugs for Crohn's Flare combined with SCD??

Hi there,I've been doing the SCD diet for 4 months since being diagnosed with Crohn's (which I have had for almost 3.5 years). I just had a colonoscopy today and found out that over half of my colon is still significantly inflamed. My GI wants me to start using Crohn's drugs and seems open to whatever option I'm interested in. I have noticed improvements on SCD, but I'm starting to think it might make sense to use some of the drugs to get past the current inflammation and kick start the healing process, with the intent to ween off the drugs as soon as the inflammation/ symptoms are under control. At that point I would want to continue using the SCD to maintain remission.My question: What drug would you suggest I try for this purpose?Thanks a ton,

[Guest guest]

entecort did nothing for me but goes straight to gut, least side

effects of steroids i believe

eileen

if you want to start intro you may be surprised you don't need the

drugs????????

>

> Hi there,

>

> I've been doing the SCD diet for 4 months since being diagnosed

with

> Crohn's (which I have had for almost 3.5 years). I just had a

> colonoscopy today and found out that over half of my colon is still

> significantly inflamed. My GI wants me to start using Crohn's drugs

> and seems open to whatever option I'm interested in. I have noticed

> improvements on SCD, but I'm starting to think it might make sense

to

> use some of the drugs to get past the current inflammation and kick

> start the healing process, with the intent to ween off the drugs as

> soon as the inflammation/symptoms are under control. At that point

I

> would want to continue using the SCD to maintain remission.

>

> My question: What drug would you suggest I try for this purpose?

>

> Thanks a ton,

>

>

[Guest guest]

Thanks for the reply.

I'm not sure if I understood your question, but if you are asking about my SCD, here's a quick history:

I started out in september doing the intro for 5 days and then adding. I wasn't sure if I did it right, so I've redone it several times. I've been very strict when I've done it in the past keeping myself to teh exact diet from BTVC. Recently I was at a point where I had a 'safe diet' that was pretty basic (intro/stage 1) but I was doing farily well symptom wise with it. The recent colonoscopy results (lots of disease in my large intestine) however makes me worry that the diet isn't working well enough (since I'm having to eat such a limited diet to avoid D and the disease is still very active) and that perhaps I would better off trying some drugs to get over the inital hump. I'm really not sure what would be best, I'd really love any feedback from anyone who has had to make a similar choice and can provide advice. I'm feeling pretty stressed out about the decision right now given the side affects of some

of the drugs...

thanks,

Crohn's: Since July 2005SCD: Since Sept 2008Meds: Nothing yet

To: BTVC-SCD Sent: Wednesday, January 21, 2009 12:47:32 PMSubject: Re: Drugs for Crohn's Flare combined with SCD??

entecort did nothing for me but goes straight to gut, least side effects of steroids i believeeileen if you want to start intro you may be surprised you don't need the drugs??????? ?>> Hi there,> > I've been doing the SCD diet for 4 months since being diagnosed with > Crohn's (which I have had for almost 3.5 years). I just had a > colonoscopy today and found out that over half of my colon is still > significantly inflamed. My GI wants me to start using Crohn's drugs > and seems open to whatever option I'm interested in. I have noticed > improvements on SCD, but I'm starting to think it might make sense to > use some of the drugs to get past the

current inflammation and kick > start the healing process, with the intent to ween off the drugs as > soon as the inflammation/ symptoms are under control. At that point I > would want to continue using the SCD to maintain remission.> > My question: What drug would you suggest I try for this purpose?> > Thanks a ton,> >

[Guest guest]

Hi ,

My son has had Crohn's for over 10 years and faced exactly the same

situation as you before he was on SCD. Are you taking any drugs at

all? Many people are prescribed 5-ASA drugs (mesalazine)like Pentasa

or Asacol at first and, while there is some debate about their

effectiveness, they are one of the safest drugs to use for the

disease. Pentasa slow releases in the small intestine and Asacol slow

releases in the colon. My son did well on Pentasa for a while but

eventually needed to use steroids. At that point he chose Entocort

(budesonide) because it has fewer side effects than predisone, and he

has had no side effects from that drug as far as he can tell. He had

two courses of Entocort before he found out about the SCD, and his

disease came back after each one. (He has continued to take Pentasa

but it did not keep him symptom free on its own.) Anyway, then he

started SCD and is much improved and almost off Entocort completely

now. According to the doctors you are supposed to be able to stop

cold turkey with it, but he didn't want to go in to a flare and so is

weaning himself off very slowly - he's now down to one every other

day.

There are at present two main theories in the medical profession

about the treatment of Crohn's - Top-down v. Step-up (if you google

that with the word Crohn's you will get lots of information to read!)

wanted to avoid the drugs with harsh side effects and so went

for the Step-up approach. The SCD definitely seems to be helping him

to get off the drugs and he'll be working on reducing his Pentasa

next.

There are lots of other ideas and it is all very confusing! As Elaine

mentioned, there is also a theory that the probiotic S.Boulardii

helps Crohn's patients and very small study was done that showed some

success. used this after antibiotics set him back a bit last

year, and he believes it helped.

Hope this is useful. If it is not clear feel free to email me off

list.

Lesley

Son w/CD

SCD Feb 08

Pentasa, Entocort

>

> Hi there,

>

> I've been doing the SCD diet for 4 months since being diagnosed

with

> Crohn's (which I have had for almost 3.5 years). I just had a

> colonoscopy today and found out that over half of my colon is still

> significantly inflamed. My GI wants me to start using Crohn's drugs

> and seems open to whatever option I'm interested in. I have noticed

> improvements on SCD, but I'm starting to think it might make sense

to

> use some of the drugs to get past the current inflammation and kick

> start the healing process, with the intent to ween off the drugs as

> soon as the inflammation/symptoms are under control. At that point

I

> would want to continue using the SCD to maintain remission.

>

> My question: What drug would you suggest I try for this purpose?

>

> Thanks a ton,

>

>

[Guest guest]

> >

> > Hi there,

> >

> > I've been doing the SCD diet for 4 months since being diagnosed

> with

> > Crohn's (which I have had for almost 3.5 years). I just had a

> > colonoscopy today and found out that over half of my colon is

still

> > significantly inflamed. My GI wants me to start using Crohn's

drugs

> > and seems open to whatever option I'm interested in. I have

noticed

> > improvements on SCD, but I'm starting to think it might make

sense

> to

> > use some of the drugs to get past the current inflammation and

kick

> > start the healing process, with the intent to ween off the drugs

as

> > soon as the inflammation/ symptoms are under control. At that

point

> I

> > would want to continue using the SCD to maintain remission.

> >

> > My question: What drug would you suggest I try for this purpose?

> >

> > Thanks a ton,

> >

> >

>

[Guest guest]

Hi ,

My son has used both Entocort and Prednisone at different times and

here is what we found:

Entocort: milder than Prednisone, very mild to no side-effects, easy

to stop taking (no need to taper off of it), and has a mild effect on

inflammation.

Prednisone: very strong, strong side-effects (bloating, moon-face,

hair thinning), takes some time to taper off, and takes time to

recover from the side effects. Lasts longer in your system (Entorcort

is not systemic); makes you wildy crazy for all kinds of food, so you

will gain weight; emotional rollercoaster (which, for a 12 year old

boy, was stressful)

My personal feeling is that all drugs have some level of toxicity,

and most mask the underlying cause, BUT our experience is that

Prednisone delivered the most bang for the dose (he was very ill when

he took it, so it was a relief to see some immediate progress). My

son didn't think that Pentasa did anything to alleviate his

inflammation.

If we had to do it over again and needed a drug, I would try Entocort

with SCD first.

My 2 cents - hope it helps.

a Kerwien

www.comfybelly.com