Alternative Medication vs Remicade

Hi, I got diagnosed with Crohn's in Feb of 2010. I am a 21 year old male. I was given Prednisone and Pentasa but now I have been told that they are not working for me and after an emergency room experience and a 2nd CT scan 3 weeks ago iv been told that the inflammation has spread further into the small intestine and that they reccomend for me to take Remicade and Imuran together. In addition to this I was told by someone about the Macrobiotic diet around 2 weeks ago and I started that diet and started feeling much better after that and I am still feeling good. I wanted to know if any of you have tried any alternative medication or diets because I am quite worried about starting Remicade due to the risks of developing infections and so on. and my doctors think that is the way to go because they do not believe that a macrobiotic diet can actually help reduce my inflammation even though it has reduced my symptoms even though I have been feeling fine for the last 2 weeks. I am currently on 15mg of Prednisone and tapering. My doctor told me to stop my Pentasa 2 weeks ago since apparently it is not helping. I also took my first dose of Imuran today. Any thoughts or advice would be greatly appreciated.

 

I would like to have any information about diets when it comes to Crohns'.  I have been to Chinese accupressure, in which aided me highly regarding the pain.  I have been to a naturopathic practioner that also helped.  I am currently on Humira,  every two weeks I administer a shot s/c and I was on Remicade before.  As for anyone out there that wants to discuss fistulas,  I am hoping to get a thread on how other people deal with them and how the doctors are approaching them.

Thanks for your reply, I am in a situation where I want to stick to the Macrobiotic Diet and give it time to do its thing and to allow my body to heal itself naturally which is what the principle of the diet is but the problem is my doctor is telling me that since my inflammation has gotten more extensive he wants to be proactive about the treatment and start Remicade as soon as possible because not doing so would place me at a greater risk for complications. I also cannot really follow the principles of the diet according to them because they want me to bolster my nuritional status by adding a lot of high calorie foods and supplements like Ensure. This obviously would not comply with the Macrobiotic diet since it does not allow refined sugar which Ensure has, it also restricts quite a lot of other foods which the docs feel would not be conducive to my situation because they feel it is very important for me to gain weight. The only reason I feel like I want to stick to the diet is because I have been pretty much symptom free for the last 10 days since I started the diet and I have read a lot of success stories with this diet and Crohn's disease. The docs did say however that is is possible to be symptom free even when you have such extensive inflammation in your intestines so I dont know, im very confused at the moment. I have started the paperwork and processes to start Remicade hopefully soon but I feel as if im not really being given a choice.

That makes me smile that your abcess is not there anymore.  I believe that it has alot to do with attitude and your support system.  Exercise helps and Humira has aided me in the last year.  Take everything into account and use your own judgement when it comes to your 'own' disease, we are all different.  Sounds like you have a great attitude. If you would ever like to chat-let me know.

Remicade has helped my husband immensely - it got him out of the hospital facing certain surgery and a long road to recovery, to back home, and returning to normal nutritional status. It has kept him this way now for 2 years (knock no wood).

Do you consider yourself in remission with the diet? Has the doc done a colonoscopy with biopsy to confirm that? The reason I ask is that sometimes diets can help manage symptoms, but not address the underlying inflammation, and chronic inflammation can have some bad results, cancer being one of them. Perhaps you can get a colonoscopy or other diagnostic tests from your doc, and if your scope is clean, perhaps you can just maintain with meds from the mesalamine family and diet. If the scope shows active inflammation, I'd opt for remicade. Yes, there are risks with remicade, but chronic inflammation is in most likelyhood worse than the risks on remicade.

Good luck.

PV

I agree with last few posters. Diets and meds should be considered as complimentary of eachother. I learned the hard way what no meds can do, and believe me you don't want to learn the way I did. Good luck to you! JMHO

Thank you all for your replies, I guess I will have to start on the Remicade then but I hope I dont have to stay on it for years and years like some people unfortunately have here because I feel that then the chances of you getting other diseases and infections because of long term usage is greater? Am I right? Tsitodawg, what is the Remistart program? Is that in the U.S because I live in Canada. Aoccc, how serious was your problem when you got diagnosed? I wish I would have an option like you to go on a diet and get completely recovered but apparently my inflammation is too extensive now for me to keep waiting for a diet to work. Hey PV, yes I mean i do feel like i am on remission since i am having almost no symptoms for 2 weeks now but no I have not had a colonoscopy since Jan 2010 which is close to the time I got diagnosed.I basically have had 2 CT scans. One was in DEC 2009 when they were still trying to diagnose me and then the second one was in MARCH 2010 when I had to go to the emergency for severe pain. So the last actual medical exam I have had was this CT scan in MARCH 2010. My docs are comparing the 2 CT scans and that is where their sense of urgency is coming from because they are saying from december til march the inflammation has progressed into more of the small bowel and they want to stop this from happening further. By the way I have never had diarrhea as a symptom. It has always just been pain and fatigue and earlier before I got diagnosed it used to be a mild fever every night. These days however since the last 2 weeks I have almost no pain,completely normal bowel movements as I always have had and my energy levels are fine too and no fever of course either.

Thanks I see what you mean, so it is kind of like a long term maintenance therapy then. But what do you think about a scenario like if lets say it was to put you into remission after 6 months or a year or so and you have colonoscopies or CT scans that show that your inflammation is greatly reduced or gone then maybe you can get off the Remicade and then try to maintain your remission using the various diets and stuff? Because as tri girl said she thinks that her cancer was due to the immunosuppreseants like Remicade that she had been taking for 10 years which is an awfully long time and I guess would increase your chances to developing some of the more serious side effects like cancer and so on. Of course I understand it is hard to predict what side effect you will or wont get but I feel like usgae for years and years might make it more likely. It is a difficult dilemma, once again thanks for your input.

True, I understand. Yes the plan is for the moment to start the Imuran and Remicade along with tapering off the Prednisone. I already took my first dose of Imuran yesterday and the Remicade procedure is still under the works so I should be able to get started in a few weeks. Hopefully everything works out well. Once you are in remission with Remicade though, do they take you off it or do they kind of have to keep giving it to you for a long time? Or is that a decision made from case to case depending on tests that they would do like a colonoscopy or another CT scan to see if the inflammation has gotten better or is gone?

i was in your similar situation a year ago, just do the remicade and the diet at the same time

Thanks everyone for your input, nanners maybe I will try asking my doc about just sticking to Imuran for a while before starting the Remicade, I took my 2nd dose of Imuran today. As for Prednisone I started at 30 mg in February and now I am at 15 mg and told to taper it off by 5 mg every 2 weeks so I will be on that for more than a month still before it gets to 0. Another problem that I feel I will have with Remicade is that I won't know how well it is working for me as far as the symptoms are concerned because at the moment for the last 2 weeks I am almost 100% symptom free so even tho the Remicade could decrease my inflammation I wouldn't know that since at the moment I am already feeling fine. So im guessing the doctors would do some kind of periodic scoping after a few months of remicade or something to see if the actual inflammation has decreased? Because hopefully if I continue to feel like this it will be hard to judge based on my symptoms how well the Remicade is working.

Hmm I see, i will look into eternal nutrition too, yea thats the problem, doctors don't know too much about the various diet options and if they do, then they dont really support them or even like to talk about them as a viable option, Thanks

Wednesday where the heck are you getting that a low residue diet is processed foods? Thats not true at all. Try googling the diet and see how much processed food is in the diet. On the low res diet I eat NO processed food, I can't tolerate processed foods. Yes I eat bread and tortillas, but I do not eat red meat or pork either, very little dairy (only eat motzarella cheese). I eat alot of fish, chicken, and turkey. I do eat what fruits and veggies "I" can tolerate. But your statement about processed foods is incorrect. JMHO