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Crohn's Disease
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Posted 10/31/2013 4:46 PM (GMT 0)
I've had Crohn's for almost four years now. Never been in a full remission.. I was in and out of the hospital all summer long and had my first surgery in June. Right now I'm taking Asacol and 6MP. The only problems I really have right now is the side effects from my 6MP and I tend to get nauseous after I eat a meal. The main side effect from my 6MP is that I get horrible, horrible mouth sores. My doctor gave me this mouth wash stuff and it worked for a bit, the sores went away but then maybe about a week later I got more sores. They get to the point where it's hard to eat and sometimes even talk. I'm tired of taking this medication and I plan on telling my doc about it at my next appointment. But, I was just wondering if any of you are on the same medicine and if you're dealing with any side effects and I also am wondering if there are any, more natural forms of treatment??
Posted 10/31/2013 6:21 PM (GMT 0)
Sara13,

I'm sorry that you are suffering from the side effects of your medication. I've been recently diagnosed with CD. I've been having a wide range of short term side effects like nausea, dizziness, acid reflux, sweating and fever at night, excess water in eyes and name it. I stopped taking my iron supplement and tapered down on entocort. My symptoms reduced or disappeared in a week.

My suggestion to you is: have a proper diet - eat at regular times, have many small meals, avoid junk food and food that you can't tolerate, do sufficient exercise, drink a lot of water. Our aim is to taper down on medicines, so that we can avoid the side effects.
Posted 10/31/2013 6:33 PM (GMT 0)
Thank you for responding. Sorry to hear that you've been dealing with some issues yourself. All I drink is water, with an occasional sprite every now and then but not too often. I had a regular exercise routine before I had my awful flair up this summer and had to stop because I'm just so tired all the time. I've tried to start exercising again but I just don't have the energy for. I tend to cook all my meals home made and usually eat small portions.

I really appreciate your suggestions and your help. Thank you once again. I wish you the best with your journey of CD. (:
Posted 10/31/2013 6:40 PM (GMT 0)
Because of repeated infection problems, one of the life threatening variety, I've had to stop my meds. I was on Cimzia for 3 year and 6MP for many years before that. I was diagnosed 13 years ago, one resection surgery when I was first diagnosed, followed by a 6 year remission meds free.

I'm working to control my disease with diet and exercise. Only time will tell if it works. I started with the Paleo Autoimmune Protocol. I remain completely paleo, but have been able to incorporate some of the things I originally eliminated, like nuts and tomatoes.

I think one of the most important things you can learn about this disease, is that is is different for everyone. What works for one may not work for another. You have to work with your physician to find the best way for you. I do honestly believe however, that any doctor that says diet doesn't matter, should go ahead and stop practicing medicine :)
Posted 10/31/2013 6:57 PM (GMT 0)
Sara, if the 6MP is causing you such bad side effects, I think you should talk to your GI about other options. There are several other meds that might get you into a more solid remission without the side effects of 6MP. Biologics might be a great option for you.

I agree with jdiane that everyone is different and we do really have to find our own path. Hopefully with the support of a good doctor. This forum is an excellent resource too. I encourage you to try some dietary approaches (SCD is one that has some data supporting it), but I'd suggest you keep your medical approach in hand too.
Posted 10/31/2013 7:14 PM (GMT 0)
Jdiane, thank you very so much for your input. It is much appreciated. You are right, everyone has to find their own path. It's different for everyone. I wish and hope you are doing well. (:

Kazbern, I do plan to talk about other options with my GI at my next appointment but it isn't until Nov. 19. So, I have to wait a bit. I've heard about Biologics but haven't done much research on it, so thank you for mentioning it.

SCD is something I hadn't ever heard of until a few weeks ago. I've thought about this but haven't decided on it yet. Thank you very much for your advice. I still have much to learn. When I was diagnosed, the doctor I had at the time didn't do much explaining about the disease or what exactly I was going through. Thankfully I now have a great doctor that explains everything to me and lets me know what's going. I'm very grateful for your advice. Wish you the best with your journey. (:
Posted 11/1/2013 2:14 PM (GMT 0)
I went on the SCD diet in 2007 and I have been in complete remission ever since.  The only drug I take is pentassa.  The SCD is not something that works overnight.  It might take you months before you see changes. It also takes fanatical dedication for it to succeed, but it sure beats turning off your immune system like 6mp or humira do. 

I had two massive rectal fistulas and BMs with white mucus and blood when I was diagnosed with CD in the colon and small intestine in 2007 .  I followed the diet with fanatical 100% dedication, and within two months, all the mucus and the blood were completely gone from mt BMs.

By 7 months both rectal fistulas were healed up and have never returned. The only drug I was takeing was pentassa.

To this day, I am still symptom free and in complete remission.  I still follow the SCD but not as fanatical as before. I suggest you read the book "Breaking the Vicious Cycle" which goes into detail about the SCD.  You have nothing to loose by trying, and all to gain if it works for you. 

Posted 11/1/2013 2:46 PM (GMT 0)
I would have it checked to make sure it isn't the 6mp causing your problems. I spent 21days this summer in the hospital because the 6mp was destroying my liver. My surgeon told me they weren't even sure if I would make it...... 6mp works totally different for everyone. I hope it's not your problem but please have it checked. :)
Posted 11/1/2013 4:16 PM (GMT 0)
Dybeye, I'm so sorry to hear you had such problems with 6MP. I hope you are doing better now. Last time I was at the doctor we checked and pretty positive that it's the 6MP. All the other pills I've been on for quite some time and they tend to work pretty well with my body. My doctor wants to switch me to humira but I would much rather try a treatment that is a little more natural. But, we shall see. (:

NY-Sooner, You're right. It's worth a shot, you never know if something is going to work unless you give it a try. I'm glad that it worked so well for you and that you've been in remission. That's awesome! I would to have to only take one pill, if that. I take a total of 12 pills a day. I'm about worn out with the pill taking. Ready to find a new treatment. I'd try just about anything once to see if it works. Looks like I have a new book to read.

Thank you very much for your suggestions and advice. I wish you the best. (:
Posted 11/1/2013 6:52 PM (GMT 0)
I'm on humira now and praying it works. I wish I only took 12 pills a day. I take more then that with my morning pills. Then I have my afternoon an evening ones. :)
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