Newly Diagnosed-questions about Maker's Diet, Remicade and pregnancy

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Octobergirl
Regular Member


Date Joined Aug 2009
Total Posts : 377
   Posted 8/10/2009 7:12 AM (GMT -7)   
Hi,

Hope this isn't too many questions in one topic. I was just diagnosed with Crohn's last month. It was quite a shock for me (as I'm sure it probably is for most people), because I never really had symptoms previously. Sigh...anyways, it has taken some adjustment to get used to the fact that I have a chronic disease, and that I have to be on medication, possibly for the rest of my life. I never used to take any kind of meds, unless absolutely necessary, because I was always afraid of how they may be affecting my body.

Anyways, I was started off on Prednisone, which I'm tapering off of now, but it didn't seem to help all that much. I have a lot of the extra-intestinal symptoms, and because I kept having to go back to the hospital since my symptoms were not getting better, my GI wanted to start me on Remicade. I was not thrilled about the rare but possible side effects, but I felt so terrible, that I was willing to try it. He also put me on Methotrexate to help prevent me from developing antibodies against the Remicade. Well, thankfully, I responded really well and immediately to the Remicade. Within a couple of days, I felt a huge difference, and now, knock on wood, I feel like I have my life back.

I'm so thankful that Remicade has worked for me, but I'm still concerned about what it may do in the long run. I also would like to get pregnant sometime next year, and the Rheumatologist said I shouldn't be on either medications when I try to get pregnant. My GI doctor said we'll talk about it in the future, but he's very pro meds and wants me to stay on the Remicade during pregnancy. (I know for sure I can't be on the Methotrexate).

So...I've read a lot about the Maker's Diet and how it's helped people put their Chron's in remission. My question is, for those of you who go on the diet and go med free, do you have yearly colonoscopies, or how do you know that your colon is free of inflammation? I've heard that sometimes you can be free of symptoms but still have inflammation. Also, how long does it take to be on the diet to start healing, and if you're on meds, how do you know when the diet has kicked in and it is OK to try and taper off meds?

Last question, I'm afraid if I go off Remicade during pregnancy, that I won't be able to take it again afterwards if I need to. Does anyone have experience with this? And is it true that if you get off one biologic, that the others won't work for you? I'd hate to ruin my chances of remission, but I don't like the idea of being on meds while I'm pregnant.

Sorry for the long post, thanks for those who read it, and I'd love to hear suggestions.

Marlowe
Regular Member


Date Joined Aug 2009
Total Posts : 31
   Posted 8/10/2009 8:06 AM (GMT -7)   
Below is a link to a website where you can ask an expert, Dr. David Rubin from the University of Chicago Medical Center, about IBD (Crohn's and Ulcerative Colitis).  He's my doctor and he is one of the top in the field of IBD.  Since you seem to have a complex question perhaps he could give you a little guidance. 
 
http://messageboards.ivillage.com/iv-bhgendigesti/ 
Marlowe
Crohn's disease, currently no medications, 2 surgeries, ostomy since 2004


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/10/2009 8:51 AM (GMT -7)   
There have been many mothers who have had successful pregnancies and healthy babies while they were on Remicade. I do know that you must be off the Methotrexate though. The thought is a healthy mom produces a healthy baby. You don't want to go off the the meds and end up getting sick and it could create problems with the pregnancy then.

Also, with any diet, you should also always use some type of maintainence medication. The diets will help calm the symptoms but do not stop the microscopic damage the disease will continue to do.

Good luck,
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed for my anxiety.  Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and 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"*

ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 8/10/2009 9:10 AM (GMT -7)   
I can't answer the questions on pregnancy or the Maker's Diet but as far as the biologics go, there are a lot of people who stopped one but had success with a different one.  I had to stop taking Remicade due to allergic reactions and loss of response, but both Cimzia and now Humira have kept my Crohn's in remission (my arthritis is a completely different situation though!). 

Crohn's Disease, Acid Reflux/Gastritis, Hashimoto's Thyroiditis, Endometriosis, Arthritis, Depression/Anxiety.  Too many meds to list them all.  =) 


Marlowe
Regular Member


Date Joined Aug 2009
Total Posts : 31
   Posted 8/10/2009 12:47 PM (GMT -7)   
looks like Dr. Rubin answered your question

http://messageboards.ivillage.com/iv-bhgendigesti
Marlowe
Crohn's disease, currently no medications, 2 surgeries, ostomy since 2004


Octobergirl
Regular Member


Date Joined Aug 2009
Total Posts : 377
   Posted 8/11/2009 11:34 AM (GMT -7)   
Thanks everyone. I really appreciate your input. I've got a lot to think about in the next year.

Marlowe, the funny thing is, my GI consults with Dr. Rubin regularly about his patients, and he is actually the one that suggested the putting me on Remicade and Methotrexate. I knew my GI doctor consulted with another GI in Chicago, but I just found out today at my GI checkup that it was Dr. Rubin.

Marlowe
Regular Member


Date Joined Aug 2009
Total Posts : 31
   Posted 8/11/2009 4:04 PM (GMT -7)   
I love Dr. Rubin! He has been the best thing that has come out of this disease. One night around 9 pm I had a blockage and I emailed him. He emailed me that night! Told me first try grape juice and walking and sure enough it worked. It wasn't a disease related blockage rather I ate 2 bags of popcorn and he thinks the scar tissue from my surgeries were pressing down on my small bowel causing the blockage.
Marlowe
Crohn's disease, currently no medications, 2 surgeries, ostomy since 2004

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