New to the site, trying to find a way to treat crohns without meds

[bishoff2]

Hello everyone!

Ny name is Erika and I was diagnosed with Crohns in Fall 2010 at the age of 18 years old. I have tried numerous medications and so far Humaira has seemed to help a little bit. However, it makes me break out so bad and I'm worried about the side effects. I'm on the journey in finding a holistic approach to treating this disease. I've decided to get off the drugs and find a different solution. Suggestions????

So far I'm trying this....

Nutritional Supplements:
Omega 3 (4 times daily)
Nutrametrix Supplements...
- multi-vitamin (once daily)
-OPC-3 (3 times daily)
- Vitamin D (once daily)
- Aloe Vera (2 daily, liquid form)

And also reading...

"The Autoimmune Epidemic" by Donna Jackson Nakazawa
"The Inside Tract" by Dr. Gerard Mullin

Any more suggestions????

 

[David]

Hi there and welcome to the community

I can understand your desire to treat Crohn's disease without any medications. It's not something I personally recommend for most people because you have to be VERY dedicated and VERY careful, but let's try to get you better positioned, shall we? As what you have listed so far will likely not end well...

1. What is your CRP, ESR, fecal lactoferrin, fecal calprotectin, vitamin B12, iron, ferritin, TIBC, hemoglobin, magnesium, potassium, folate, and zinc levels? How does your CBC and liver function tests look? If you don't know, find out. If you haven't had them tested, get them tested. And plan to have them regularly tested while you're trying the holistic way so you can determine if it's actually working or not. "I feel better" is not sufficient. "I feel better" can turn into surgery because your disease wasn't properly controlled despite reduced symptoms.

2. Diet. What is your dietary plan? SCD? Paleo? Enteral/elemental? Something else?

3. Lifestyle changes: what's the plan? How are you going to reduce stress?

4. Vitamins and minerals: If you don't know your vitamin and mineral levels as outlined in 1, then you have no business supplementing right now. You need to do this methodically. Find out what you're deficient in (if anything) and then supplement properly. Then get retested to make sure your dose and dose method are sufficient.

5. Exercise. What are you planning?

Let's start there

 

[Angrybird]

David has easily got things covered so I will just leave it at 'hello' and welcome to the forum, there is lots of helpful info here so I am glad you have decided to join

AB
xx

 

[KWalker]

Welcome. You can most certainly live with crohns without being on medication, you just have to tell yourself you don't need to rely on medicine, and most people are afraid to try it. I'm also med free, and doing awesome! I've been on meds for almost my whole life, stopped in 2010 and I feel better than I ever did. My scope said I still have active crohns and that I'm not in remission but that's not going to determine how I feel. I don't have plans to go on meds anytime soon

 

[bishoff2]

Thanks so much David and everyone for the information! I definitely will get all that tested as soon as possible! Are those just all blood tests? And, those supplements were all recommended from a licensed nutritionist so it was not just random But you are right I need to see what I am deficient in first before taking supplements!

All this feedback is already making me feel better!

 

[bishoff2]

And, as for diet I currently am gluten and dairy free and the only animal meat I'm eating is fish and chicken. I also avoid all fatty/fried foods. In general, I would like to consider myself a healthy eater.

As for exercise, I run for 25 mins ATLEAST 3 times a week.

Stress is absent as of right now, but I am sure that will return once I start school for the fall semester.

 

[kiny]

What do you base the Aloe vera on.

http://www.crohnsforum.com/showthread.php?t=38655

They don't really know what it does, I think there's a chance it might help crohn, but it might hurt too, that's why I ask where you found out to take it.

Another thing is that aloe vera is not without risks, you say you don't want any side effects, long term Aloe vera is linked to toxic hepatitis.

Aloe vera induced toxic hepatitis:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2826749/
http://www.ncbi.nlm.nih.gov/pubmed/17726067
http://www.ncbi.nlm.nih.gov/pubmed/17142185
http://www.wjgnet.com/1007-9327/11/303.pdf

it's not for long term use

 

[Lucinda]

I admire your resolve and wish you the very best of luck. David is right that you need to be extremely careful. I ended up in the hospital after going off my meds. However, I was not methodical about it like David has suggested. I am careful with my diet and vitamins but it takes a lot of discipline to be med-free. More than I have certainly.

The medication is certainly a double-edged sword. It can do great things but it can also make you feel terrible. I understand being reluctant to rely upon it at such a young age. Be careful about whom you listen to. Anecdotal information from people is just that. Everyone experiences Crohn's differently because it can show up in so many places in the body. So even without meds, please make sure you stay under the care of a doctor who can monitor your conditions. I have seen too many people go from feeling just fine to being in the hospital and facing emergency surgery in breath-taking speed.

 

[Scaryman]

I admire your resolve and wish you the very best of luck. David is right that you need to be extremely careful. I ended up in the hospital after going off my meds. However, I was not methodical about it like David has suggested. I am careful with my diet and vitamins but it takes a lot of discipline to be med-free. More than I have certainly.

The medication is certainly a double-edged sword. It can do great things but it can also make you feel terrible. I understand being reluctant to rely upon it at such a young age. Be careful about whom you listen to. Anecdotal information from people is just that. Everyone experiences Crohn's differently because it can show up in so many places in the body. So even without meds, please make sure you stay under the care of a doctor who can monitor your conditions. I have seen too many people go from feeling just fine to being in the hospital and facing emergency surgery in breath-taking speed.

Hello, I am new to the forums but I have had my personal relashonship with Crohns (2004 diagnosis). I have tried lots of different medications and also tried the no medication route. I ended up basically screwing myself ad ended up hospitalized and multiple ct scans and a scope determined 3 to 4 scriptures. They tod me they had to use a pediatric scope to push gently through one of them. Afterwards they wanted to do scrictureplasty surgery and something else. All the while I am on deloudid and unable to think and make tough choices for myself:sign0085:. (that's the last time I'll allow myself to be exposed like that.)

If it wasn't for my moms 40 years of experience dealing with Crohns I can only imagine the outcome. After a barrage of discussions with my mom and surgeons and dotors, I had no choice but to compete a "against medical advice discharge" after 10 days in that hospital. My mother was able to get me a consultation with G.I Doctor/team thats so reputable and arguably second to none ( you guys can judge for yourself) at the University of Chicago. So yeah let's stop and think about this insanity I just got myself into..:yrolleyes:

I just did a AMA discharge coming off cold turkey from a very tough addictive narcotic (deloudid). I was on 60 mg of solumedrol (prednisone injection). I also committed to stop smoking (nicotine withdrawal). They didnt give me any meds when I left. There are people on these forums who've been through the ringer and back and know that I'd have to be:
A. Insane to stop cold turkey deloudid and steroids.
B. just plain stupid and crazy.

I did not have a choice as a 7am flight was booked for me to Chicago the next day.

Basically what I'm trying to say is if your making a choice to go off mainstream treatment/ Maintence of Crohns you really need to keep a close eye on things and listen to your gut.frequent CBC testing. I cannot stress that going off medication for Crohns obviously makes you very suseptible to lots of problems. Only thing I'd ask and from what others are saying and giving specifics to look for, is be careful. As we all know life changing events suck for Some of us, there may be others that can control that level of stress and avoid a flare. But without mainstream treatment it would be tough, how do you plan on dealing with everyday work/school related stress? let alone a life changing event that could cause you to go on our favorite clear liquid diet?
My avoiding mainstream treatment and ignoring my body has cost me $67000, it's a very expensive lesson that will NOT be repeated, because I own that debit with no medical insurance or job. I am still recuperating and gaining my weight back. Plese consider thinking this one through a bit more is all I ask. It's just to dangerous and risky for me, everyone is different obviously. I just wanted to give you my side of things so it can help you make a educated choice is all.