How can you get off meds?

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sabine1
New Member


Date Joined Oct 2009
Total Posts : 2
   Posted 10/6/2009 6:34 AM (GMT -7)   
Hello everyone,
 
I just found this forum and I'm happy to see some advice about SCD out here.  My son is a young professional, married with young children, but I'm still his mom, so I want to be informed. 
 
He has had UC for about 18 months, and recently had a flare that lasted over a month.  He started SCD out of desperation 3 weeks into his flare, but ended up in the hospital on huge doses of IV steroids just to get the bleeding stopped.
 
He is home now on steroids, and will be starting 6MP in 2 weeks.  He still wants to follow the SCD.  My question is this:  if you are on medication and following the SCD, how can you know when to go off the meds?  His flare was so bad that he doesn't dare stop medication.  He is trying to avoid a colectomy.
 
His doctor has advised him that the nut breads on the SCD are too laxative for him, and told him to eat regular bread.  Sigh. 
sabine


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 10/6/2009 6:55 AM (GMT -7)   
Sabine,

Hi and welcome to Healingwell. I will tell you my personal opinion and share from my own personal experiences. First off I believe that you should consider the meds and the diets as complementary of eachother. I personally do not believe any person with IBD should ever be without meds. While you are busy getting on with your life, the Crohns (IBD) in my case is always still in there doing it damage on a microscopic level. I do not use the SCD diet, but I live on a low residue diet all the time, and that works well for ME. I once enjoyed a long remission med free, but my remission ended very badly as I had to have a emergency resection because I was completely obstructed. Also because I had been on no meds before, it took a very longtime for my Crohns to get back under control. I was miserable for years. I am now in remission again and successfully maintained only on Asacol. I will never be without medications again. I would hate for your son to learn the hard way like I did.

You might also want to visit our UC board, and ask them what their experiences have been. I know with UC somethings are a little different than they are with Crohns.

Good luck!
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 10/6/2009 7:06 AM (GMT -7)   
Sabine,
Welcome to healingwell! You might want to check out the UC board, since this is the crohns board. But since we are all IBD's here, there have been some here that have had some success with SCD. There is a link in Ivy6 posts about diet.
I want to caveat that I have ended up with life threating bleeds in trying diets. (alot of blood transfusions)
We will never recommend going off any meds, because we are not MD's and therefore will not go into that legal jungle.
He may never get off the drugs, if he has severe disease. While diet might help him get in remission and hopefully it does, diet is usually more successful with mild or moderate disease. I also want to assure you that 6mp is really on the mild to moderate scale of drugs for IBD.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 10/6/2009 8:40 AM (GMT -7)   
sabine1 said...
  My question is this:  if you are on medication and following the SCD, how can you know when to go off the meds? 
You don't know.  Does he like to gamble?  :)
33 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. Proferrin iron pills.

Tried SCD, didn't work, now avoiding gluten and dairy.


Go Saskatchewan Roughriders!


BeeSting
Regular Member


Date Joined Nov 2008
Total Posts : 392
   Posted 10/6/2009 9:22 AM (GMT -7)   
I have read about the SCD diet. And learned that there is different things to eat in the first phase, the second and the third. If you don't follow this you may get worse, so there are some people often being in a hurry and consider themselves well enough to skip the boring phase one diet, because it's just chicken broth without any meat or veggies, besides, it's really restricted in that phase, so they go directly to phase 2 or even phase 3. Doing so will lead to increased diarrea / blood, a lot of pain and it takes longer time to repair the damages that's done.
Well, this is just my opinion, I am not saying any of you did this, but we always want a quick fix and being better asap.



Rider Fan, I am considering to avoid gluten and dairy. For how long time have you been doing that? How does it work? Thanks in advance for an answer!

LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 10/6/2009 9:35 AM (GMT -7)   
I wouldn't go off of the medication. That's there to be, as Nanners said, a complement to the diet. Medication prevents the disease from working its horrors in your system. A better diet helps, but it just doesn't do what the medication can.

I would highly recommend probiotics like VSL#3, Culturelle, or Align (this one helped me tremendously) in tandem with medication and a good diet. Repopulating beneficial bacteria in the gut is vital.

And just for the record, I had a friend with pretty severe UC, but he's stayed on the medication and done really well after a while. He's now a teacher in Japan.
Diagnosed with Crohn's in May of 2008.
Currently taking: Prednisone, pentasa, omeprazole, and humira. Using probiotics and a multivitamin.
bonniegriffith.blogspot.com/
Learning how to live again.
"He who has a why to live for can bear with almost any how."


Becoming undone
Veteran Member


Date Joined Jul 2007
Total Posts : 927
   Posted 10/6/2009 10:40 AM (GMT -7)   
I agree with all that has been said previously. With IBD, diet can be tricky. For some, me included, things such as nuts, fruits, veg, all big NO-NO's when flaring. Let the body decide what it can or cannot tolerate. Heck, when I'm not feeling so good, I can't even have mushy oatmeal as there is too much fiber for the ulcerated colon, I'm usually good with baby cereal...or clear liquids...Oh, and I second LMills, the probiotics are a good idea too...
"The earth laughs in flowers"


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 10/6/2009 10:46 AM (GMT -7)   
BeeSting said...
I have read about the SCD diet. And learned that there is different things to eat in the first phase, the second and the third. If you don't follow this you may get worse, so there are some people often being in a hurry and consider themselves well enough to skip the boring phase one diet, because it's just chicken broth without any meat or veggies, besides, it's really restricted in that phase, so they go directly to phase 2 or even phase 3. Doing so will lead to increased diarrea / blood, a lot of pain and it takes longer time to repair the damages that's done.
Well, this is just my opinion, I am not saying any of you did this, but we always want a quick fix and being better asap.



Rider Fan, I am considering to avoid gluten and dairy. For how long time have you been doing that? How does it work? Thanks in advance for an answer!
I'm not convinced that it helps much.  I haven't been too adventurous, but I think the dairy (low lactose and with taking Lactaids) bothers me more than the gluten which would seem to contradict the SCD diet theory.  I've started to eat some gluten after a year of avoiding it to help me gain some weight.
 
In any case, it was no cure all as I still had to go on Humira, which has helped me tremendously the past 8 months.
 
But I encourage you to try it, it won't hurt you.  Good luck!


33 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. Proferrin iron pills.

Tried SCD, didn't work, now avoiding gluten and dairy.


Go Saskatchewan Roughriders!


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 10/6/2009 2:26 PM (GMT -7)   
I just wanted to say that I have been on 6MP for over a decade with great success. I think I may be one of the longest 'users' on the board. As you can see from my signature, I had 3 resections in a short period of time, 6MP has kept me out of surgery and given me the chance to enjoy life with my husband and daughters. I believe the reason I had to have 3 resections in such a short time was that I was undiagnosed and untreated for 10 years so my disease was running wild. Like Nanners, I will never go unmedicated again. It does take about 3 months for 6MP to really start working, so your son will have to give it some time, but it can get things relatively calm and is on the milder spectrum of drugs. I do believe that diet plays a great part in our health, but each of us needs to find the right one for us. And only by trial and error will be able to find out what that is. For me, it is a low residue/low fiber diet. Others do well on the Makers Diet or SCD or a High Fiber Diet, it really is very individual. Your son will have to keep track of what bothers him and avoid those foods for a while, then try them again several months later. If they still bother him, they are off his list.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


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


jpnutritionfirst
Regular Member


Date Joined Apr 2009
Total Posts : 383
   Posted 10/7/2009 10:58 AM (GMT -7)   
in my opinion, and this is just an opinion, i think doing a diet while on medication is a good idea. I've been on strict SCD diet for 6 months now along with being on Remicade. I'm a medical student so I've actually assisted in operations on Crohn's patients and it really freaked me out when I was diagnosed a couple years ago.

I will do anything it takes to avoid surgery and to be honest I don't know if diet is an effective prophylaxis, but I prefer to believe this for my own peace of mind. I've read a good amount of books and studies (Breaking the Vicious Cycle, Life without Bread, Dr. Haas original Celiac book, The Stone Age Diet, elemental diet studies, etc) have come to the conclusion that it helps long term.

I think if you're in really bad shape though, you can't afford to cut out food groups or you will whither away into nothing. If your disease isn't too bad and can muster up the strength to try it, then it's worth it. For example I have moderate Crohn's colitis and had a pretty bad flare 6 months ago but it wasn't so bad that I had to get hospitalized.

I have personally experienced much improvement, but of course the confounder is Remicade. I am also taking acidophilus probiotic and boswellia (I stopped taking asacol because it contains lactose). I have about 2 bowel movements per day which are semisolid, no other symptoms. Now as far as getting off medication, I think you must have a sustained period of absolute perfection before you even consider it, probably a few years. If I notice that my stools become absolutely solid and remain that way for a couple of years, then I will try to get off of Remicade.

Of course there are examples of people who have gotten off of meds then had a flare then surgery, etc. I don't think this should discourage you from trying to get off of the meds. Remember that many people have gotten off meds and are doing just fine. That is my goal, but I acknowledge that this might not be possible.

My one recommendation, based on my readings, is that you have to do these diets for a long time. In Breaking the Vicious Cycle it says that you should try it for a month and see if there is any improvement before you decide to throw in the towel. But what is improvement? The improvement can be minor or major. The recommendation is deliberately vague. I didn't see much improvement in the first month but I did at about 4-5 months. It also depends where your disease is. Mine is mostly in the colon so it's going to take a long time. Try to make a commitment of at least 2 years if you can.
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