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Posted 3/9/2010 1:58 AM (GMT 0)
Hi All,

I was recently diagnosed with crohn's in november of 2009. I just found out today that I will be needing to choose between Humira and Remicade because Immuran is no longer working for me. I have no idea what to choose, I have read my info brochures and am worried about not being able to get pregnant and all the other side effects these injections may or may not cause.

I am only 20 and would really appreciate some advice, I have no idea what to do about my diet and have been waiting since my daignosis date to see a nutritionist (apparently shes busy) I have been told no one case is the same so research hasn't been helping me, I have been on too many diets to count to try and control the symptoms and all it does is cause weight loss and I am already underweight!

HELP!!!
Posted 3/9/2010 2:53 AM (GMT 0)
Hi mighty.mouse,

I have to say that I don't agree with the recent trend among Drs to start the "hard drugs" for Crohn's early in treatment. I feel that they should be used only as a last resort. JMHO.

Have you tried reducing your diet to a minimum and keeping a diary as you add new foods to find out which ones you react to? It seems to be a valuable tool to most of us. The difficulty lies in the fact that no matter what you reduce your diet to, it might be among the "bad" foods.

Welcome to the site and I hope things get better for you soon.
Posted 3/9/2010 3:04 AM (GMT 0)
Welcome to the forum, mighty.mouse.

What my doctor's reasoning is, Remicade first, since it has been used for 10+ years for CD, as opposed to Humira's 5.

about the diet, it's really hard for anyone to tell you what is correct to eat, since different people react differently. Stick with what you can handle, and avoid your triggers.

There are many ladies around here who have had successful pregnancies while on pretty much every drug.

Best of luck.
Posted 3/9/2010 3:31 AM (GMT 0)
For foods, I'd recommend using the search engine up top and search "what are your safe foods" you'll find lots of valuable help from members here in that post. Welcome to healing well.
Posted 3/9/2010 4:07 AM (GMT 0)
Hi Mighty Mouse, and welcome to the board.  My daughter was diagnosed with Crohn's last year about this time. She is only 10 years old (as of next week). I don't have Crohn's myself, but as a parent to one so young I share in every moment of this with her so I understand how tough this can be. First thing I will say is that if you are unsure or unconvinced of what your doctor is telling you, seek a second opinion from another doctor.  I have read this many times over on this board. Secondly, as you know, at this time there is no cure for Crohn's, no magic pill unfortunately, that will make it go away. There are however alot of treatment options which include everything from surgery, to RX meds, to supplements, to enteral nutrition, to dietary changes. What works for one does not always work for another.  Frustrating, I know. 

Right now my child is on Pentasa, Entecort (will be weaning off soon so says Doc), and 5 weeks into starting 6 mercaptopurine.  I was doing what I thought I could to keep her off the 6MP, but she is young...will not adhere to strict dietary changes and was continuing to lose weight and color in her face.  As of today, she is doing well...not sure why is the kicker. 6MP? maybe. Increased dose of Vitamin d3? maybe.  I guess time will tell, and I am praying that "time" is one of remission.

As for remicade, her doc told us recently that studies are showing that the younger you are when you start on it, the more effective it will be at getting and keeping you into remission.  That said, we still opted for the 6MP at this time because her disease is (fortunately) not so severe that it warrants remicade.  Is yours?  Our Doc holds it out there as if it's our "last resort" med.

As for diet, if you're willing to make changes why wait for a nutritionist?  Have you read Elaine Gottschall's book "Breaking the Vicious Cycle"?  If not, you may want to pick up a copy and consider this for yourself. It has helped many here (not my child as she won't do it), but again...not for everyone.

Also, are you taking Vitamin D3?  If not, you may want to google "Vitamin D3 and Crohn's". I've been reading some amazing things lately, not to mention an article I read earlier about the importance of Vitamin D3 to an unborn baby. It seems most Crohnie's are deficient in D.

Good luck. Keep posting. It helps alot.

 

Posted 3/9/2010 3:29 PM (GMT 0)
Hey Mightymouse and welcome to Healingwell. We have had many moms on this forum give birth to healthy babies while on meds such as Pred, Imuran, Remicade and Humira. So don't worry about that aspect of these meds. Good luck!
Posted 3/10/2010 1:32 PM (GMT 0)
Thanks a lot for the advice everyone,

Unfortunately my CD is relatively severe, and my GI says it is time for remicade or humira, I have been on prednizone, immuran and 3 other drugs that i cannot spell or pronounce, and nothing has worked excluding the prednizone, however my GI says that it is too dangerous for me to be in a sterroid cycle because when I weened of prednizone I lost the weight and more extremely fast, so the weight roller coaster would not be ok for me.

I am doing ok with avoiding my trigger foods, however I am still reletively new to this so I'm not sure what all of them are. I do keep a food diary so that should help and am having vitamin b12 injections and taking a vitamin D supplement. so far my body just isn't absorbing the D supplement and soon I will have to look into injections as well so that it can be absorbed.

My mother takes me to most of my doctors appts. and was surprised that my GI only gave me about 48 hours to decide which drug I want to choose (remicade/humira) we would get a second opinion except that my current GI is probably our 5th. =[ guess I'm just having bad luck.

any other advice would help greatly =] thanks for all the posts.

Posted 3/10/2010 4:19 PM (GMT 0)

Have you read the book "Breaking the Vicious Cycle" by Elaine Gottschall, or checked out the website called pecanbread.com?

Also keep in mind that some Crohnie's are able to get into remission with enteral nutrition (a strict liquid only diet for a period of time, in case you're unfamiliar) by drinking one of the formulas that are out there, i.e. EO28 Splash, Ensure, Boost, Absorb Plus, etc. You can google all of these if you are unfamiliar with them. I'm sure there must be more that I don't know about.  Most people (my child included) are not willing to give up food for the necessary time period, but for those who do it seems to help alot.

Posted 3/10/2010 5:17 PM (GMT 0)
Here's my thoughts... If you're at the point where it's time for Remicade or Humira (there is a third in the same category - TNF-alpha blocker - called Cimzia), well it's a big decision and I think you should lean heavily on your doctor's opinions.

Personally I'd ask your doctor this about Remicade/Humira. Remicade has been around longer and certainly proven efficacy. However it's made with murine (mouse) antibodies and many people tend to lose response to Remicade. Many people, once they lose response to one TNF-alpha blocker, it's not uncommon for the others to not work very well either.

Humira is made with all human antibodies and (I'm pretty sure) doesn't carry the same chance of your body creating antibodies to (becoming immune/allergic).

The TNF-alpha blockers are great meds. Sure they carry risks, but when they work, they typically work well. To get on one and not lose it would be a dream come true for me! (I lost Remicade after 2 years.)

Of course I am not a doctor and don't have the perfect answer, just my own thoughts on the question. In any case it's worth asking your doctor how s/he feels about that.

Good luck and welcome to the forum.
Posted 3/10/2010 9:38 PM (GMT 0)
Hi I have been on almost every single drug out there, remicade worked for me for about 6 months.
Im now taking 10000 iu a day of vitamin D3 not just d.
Its been 7 months and Im off all medication, Im eating anything and everything.
I think it will change your life.
Posted 3/11/2010 12:07 AM (GMT 0)
I too had to come to the decision of deciding between Remicade and Humira. I had surgery to remove the diseased area and 10 months later it was back. Doc said that these to drugs have been wonderful for his patients and that it was my next step to keep this DD undercontrol. I thought that I never would have to be on any of these drugs and well here I am.
I chose Humira over Remicade for 2 reasons. First reason was with Humira i could do all of the injections myself ve Remicade sitting there for 3 hours with an IV in your arm. Second reason was because of the mouse protein vs human protein.
The thought of a mouse protein just didn't didn't sit well with me.
I was extremely hesitent in taking Humira at first as i read all of the side effects that may happen, but i didn't want to have to have surgery again and lose more intestines. I have not had any side effects and if I do, I'll figure that out if i get there.
Good luck with your decision.
Posted 3/11/2010 12:53 AM (GMT 0)
Hey all

I haven't read that book "Breaking the Vicious Cycle" but I did research at my local book store and it is there, I will be picking it up next paycheque. (I read the synopsis and it already helped!! thanks a lot!) as for humira/remicade I have chosen humira for 3 basic reasons, the self injection is more convenient than finding a way to the clinic every 8 weeks and quite a bit more often in the beginning (i dont have my license) I also prefer the sound of human proteins to mouse proteins and my body reacts really fast with allergies, I would most likely build up antibodies and fast. the third reason ... I am TERRIFIED of needles and with humira I can get the docs to teach someone I trust to perform the injections instead of me doing it (of course I will learn aswell)

I have looked into completely liquid diets and have tried one or two, they work well, but I find as soon as the cleanse is over and I slowly go back to solid food (avoiding trigger foods of course) I normally have a flare instantly. its quite frustrating! I know my mother hates it because shes convinced I'm not eating properly ;P but shes a mother :). however I know I am eating properly and it still doesnt work.

I will definitely look into some new liquid diets, I'm willing to try anything to get better!!! also, when I was at my doctors today he looked into my last bloodwork (2 days ago) and did inform me that I was taking the wrong vitamin D :S!!! thanks to that being brought up on this post! I would have never asked!!! so I have started taking vitamin D3 and it is the type that disolves under the tongue so it goes directly to the blood stream! no other injections for me :)

thanks again everyone! all this advice is making my outlook on life a little brighter! its nice to have help :)
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