Crohn's disease and medicine

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yenter
New Member


Date Joined May 2010
Total Posts : 7
   Posted 5/6/2010 3:41 PM (GMT -7)   
Hi:  I was diagnosed with Crohn's about 3 years ago.  I am in myy 60's  I have adverse reactions to alot of meds.  My doctor had me on pentasa, but I broke out in rash after 2 weeks.  She also had me on entocort.  It was great.  I was able to eat foods that I hadn't been able to eat and gained about 20 lbs.  I am now watching myself.  She recently put me on mercaptropurine 50 mgs.  I have to have blood drawn every 2 weeks.  So far so good.  She said it can take anywhere from 1 to 3 monts.  It has been about 1 1/2 months.  Some days are good and some are not.  I am very lucky, no diarreah.Can anyone tell me if they are on the same medicine and if so, how they are doing.  Any special foods that are good for you?  Thanks.

Post Edited By Moderator (Nanners) : 5/7/2010 7:36:59 AM (GMT-6)


MToronto2
Regular Member


Date Joined Apr 2010
Total Posts : 232
   Posted 5/6/2010 3:47 PM (GMT -7)   
Diet is truly individual beyond these rules:

No nuts
No seeds
No popcorn

Avoid peels, skins, insoluble fiber such as salad, water melon (I'm ok on other melons).

Other than cucumber, peeled and seeded, I avoid raw veg when flaring and I avoid fibrous meets, stew beef, ribs, etc., and canned fish.

As for meds, I've just started a drug (LDN) just being researched for crohn's but proven effective for MS and other auto immune diseases as I cannot tolerate immune suppressives.


Hope the 6MP works well for you :)

Post Edited By Moderator (MMMNAVY) : 5/6/2010 6:44:52 PM (GMT-6)


Bammer
Regular Member


Date Joined Mar 2008
Total Posts : 381
   Posted 5/6/2010 4:44 PM (GMT -7)   

Welcome Yenter. I was just wondering if you had problems for many years previous to be diagnosed? I was in my 50's when I was diagnosed and have since had a resection and am on methotrexate (same class of drug as you are on). I am getting blood tests done every two months now. I do try to eat healthier and only have to avoid popcorn.

 


58 yr. old F dx. CD 07/07
Started weekly methotrexate injections 09/22/08.
Lap assisted sigmoidoscopy done May 11/2009


yenter
New Member


Date Joined May 2010
Total Posts : 7
   Posted 5/6/2010 5:53 PM (GMT -7)   
I had acid relux and a hiatal hernia.  I always suffered from gas in general.  Now that I look back, my doctor is probably right about having thi s  for years.  Now when I look back, my mother probably had Crohn's, but they didn't go to doctors like we do. Thanks for the advice with popcorn.
 
thanks.  Yenter

Post Edited By Moderator (Nanners) : 5/7/2010 7:36:21 AM (GMT-6)


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 5/7/2010 6:38 AM (GMT -7)   
Hi Yenter and welcome to Healingwell. 6mp is a very good med and has had proven results for some of our members for as long as 10 years. Just make sure you get the regular blood tests as these will show if you are having any problems. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 5/7/2010 7:36 AM (GMT -7)   
I've been on 6MP for over 12 years in combination with other drugs, mostly prednisone. It has helped me to stay out of the hospital and more importantly the operating room. I was undiagnosed for 10 years and then spent the next 10 years dealing with the damage that was done. But I have had a good 12 years of relative calm, and I am hoping it will continue.

As far as diet goes, I stick to a pretty low residue diet. I do cheat once in a while, but I always end up paying for it. sad
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.....


newfoundsun
Regular Member


Date Joined Nov 2009
Total Posts : 145
   Posted 5/7/2010 11:24 AM (GMT -7)   
I follow the Specific Carbohydrate Diet.  A big part of that diet is homemade yogurt and chicken broth.  I don't eat pre-packaged and processed foods.  Diet truly is individual, and unfortunately, trial and error is usually what lets me know what I can and cannot do!
 
I did just make banana bread yesterday.  Oh my!  I haven't had a piece of "real" bread in almost 6 months, and this (made with almond flour and honey) is amazing!
 
:-)  
newfoundsun
 
http://www.newfoundsun.wordpress.com/  (my blog about this journey I have just started)
 
CD diagnosed 11/12/09
Being treated by a Naturopath who himself has Crohn's.


cleo35
Regular Member


Date Joined Feb 2007
Total Posts : 430
   Posted 5/7/2010 12:38 PM (GMT -7)   
Hi yenter: 6mp was a wonder drug for me for almost ten years. Unfortunately, I then started having more symptoms - doc increased the dose- then I REALLY messed up and missed a blood test. I became severely anemic and ended up in the hospital for several days being tested for leukemia!! You have no idea what being truly anemic feels like till you've experienced it - not to mention having to go off a drug that was working so well because of my own stupidity!! Keep the lab appointments!!!!

JavaJay
Regular Member


Date Joined Mar 2009
Total Posts : 452
   Posted 5/7/2010 1:19 PM (GMT -7)   
I don't quite agree with the no nuts, seed, or popcorn.  I eat these as well as raw vegetable and I can tolerate them.  I think these go along with the everyone is different catagories. 

MToronto2
Regular Member


Date Joined Apr 2010
Total Posts : 232
   Posted 5/7/2010 2:50 PM (GMT -7)   
Your very lucky and you might be playing with fire, then again you might not be.

If all that stuff is broken down, and you can see non of it in your poop then your probably alright, but one chunk of nut, a popcorn kernel or a seed can get stuck in an open ulcer and can create all kinds of problems.

I can only eat raw veg when I'm not flaring, and then I do enjoy :)
CD 24 years. Multiple surgeries in past 10 yrs. 4 year Illeostomy. Mesh rejection. Too close to death, twice. Large inscisional hernia. Perpetually underweight. Short bowel syndrom. Have used a variety of complementary medical therapies. Highly recommend Bowen Therapy as the best body work. Take me vites. Started Low Dose Naltrexone March 27, 2010. Got married for the only time 2008. Survive because of the love of good friends, and because I can. Happy to be alive. IBD needs more awareness and more voices willing to speak up. BE well.


yenter
New Member


Date Joined May 2010
Total Posts : 7
   Posted 5/11/2010 2:05 PM (GMT -7)   
I would like to know from thse of you on mercapurine  how long it took to kick in.  I have good days and bad.  I am almost on for w months.  I also am learning what I can eat and what6 bothers me. 
lthough some days I can eat junky food and I am fine.  Thanks

Stef17
Veteran Member


Date Joined Feb 2003
Total Posts : 1811
   Posted 5/11/2010 9:05 PM (GMT -7)   
I have been on and off of it a few times. It always takes about 3 months of being on it for me to see any results.

yenter
New Member


Date Joined May 2010
Total Posts : 7
   Posted 5/14/2010 11:30 AM (GMT -7)   
hi is there any reason that you go on an off?

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 5/15/2010 8:14 AM (GMT -7)   
There shouldn't be. You should always be on some kind of medication, or your disease will take over. God Bless!
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

yenter
New Member


Date Joined May 2010
Total Posts : 7
   Posted 7/11/2010 5:33 AM (GMT -7)   
I could not take mercaptopurine any longer.  I unfortunaely have every side effect a medicine can give you.  Even ones you haven't heard of.  I was getting bad burning in my gut.  Since i went off of it, I don't have that feeling.  I have been really watching what I have been eating, and I feel good.
 
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