I was diagnosed with crohn's disease in 2006. I had never heard of it before. I was put on asacol and prednisone. I missed 4 months of work from the drugs, not the disease. I have been on every drug expect remicade and am allergic to them all,, expect entocort. I will not go on remicade, no mater what, because of the side effects. yes I know not everybody has side effects, but I have with everything else. I had surgery in Jan 2010 due to blockage, where 10 inches of instestine and 6 inches of colon were removed. I have been if flare up mode every since. I have yet to find remission. I was on entocort and pentasa until about 6 weeks ago, they never helped me. I started drinking a supplement called ASEA to see if it helps. The people who sale it claims it will work, most likley because of the nice profit they make on selling it. But I am desperate to find something. I have been on it since june and didn't notice any difference. About 3 weeks ago it appeard to be helping. I won't say it is diffently helping until I am 100% sure. I have more normal bowel movements than I have had in years, but do still have some bad days, today being one of them. If this does not work I am thinking of trying a macrobiotic diet. Has anybody tried this and did it work for them. I am often depressed from dealing with this disease, no i won't take anti depressents.
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My journey with crohn's disease
- Thread starter beccalynn3
- Start date
Two things-
1. I am not a huge fan of western medicine as it treats symptoms rather than their origin sometimes, but Remicade alone had me in remission for 7 years.
2. I have had my first flare up in forever this year, and despite all the doctors saying not to bother I started a paleo-ish diet. No dairy, no eggs, no wheat/gluten, no legumes, no refined sugars, avoiding hormones and pesticides wherever possible. The results are fantastic. In a few days I could tell the difference-almost normal even. And if I cheat at all (like i did this morning with the tiniest cherry tart from starbucks) I feel it within hours.
The book I read to get me started is called "Living with Crohns". I highly recommend it. I am looking forward to my first meeting with a naturopathic physician next week. i will ask her about the macrobiotic diet as well.
The depression is to be expected and I don't think it should be medicated when it stems from legitimate problems. We should focus on healing the real issues, not masking them.
1. I am not a huge fan of western medicine as it treats symptoms rather than their origin sometimes, but Remicade alone had me in remission for 7 years.
2. I have had my first flare up in forever this year, and despite all the doctors saying not to bother I started a paleo-ish diet. No dairy, no eggs, no wheat/gluten, no legumes, no refined sugars, avoiding hormones and pesticides wherever possible. The results are fantastic. In a few days I could tell the difference-almost normal even. And if I cheat at all (like i did this morning with the tiniest cherry tart from starbucks) I feel it within hours.
The book I read to get me started is called "Living with Crohns". I highly recommend it. I am looking forward to my first meeting with a naturopathic physician next week. i will ask her about the macrobiotic diet as well.
The depression is to be expected and I don't think it should be medicated when it stems from legitimate problems. We should focus on healing the real issues, not masking them.
I seen a natropath when I was first diagnosed, she did no good for me, but I am sure there are good ones out there. Like Drs have to search until you find one that is right for you. I wish you luck and it is nice to find someone who is more into the natrual remedies and not the drugs. The lady who got me started on the ASEA wanted me to sale it also, which to me is a bad sign, (profit). I told her no, but if it works I will shout it to the world and let everyone know, but on the other hand, if it don't work I will be her biggest nightmare. So tiered of people promoting products to desperate people for profit. So we will see. The luck you had with your diet is encouraging to me. Thank you. I am glad I joined this forum. I need to talk to people who understand the disease.
David
Co-Founder
- Location
- Naples, Florida
Hi beccalynn3 and welcome to the community! Various things:
1. In my opinion after reading the ASEA "science" and "Why multi level marketing" tripe, I feel comfortable saying it is a load of crap and they're preying on your desperation in my opinion.
2. Research enteral/elemental nutrition. It HAS been shown, by science, to help people with IBD reduce symptoms and even reach remission. As such, it doesn't need multi level marketing to sell as the tons of people it has helped and countless doctors speak highly of its efficacy.
While I think Remicade is an excellent drug, I can understand your concern and won't try to convince you otherwise. However, Crohn's needs to be hit from all angles. Some ideas:
- Western Medicine - Continue with what you're on
- Dietary changes - Enteral/elemental nutrition as mentioned with a slow transition to [wiki]paleo diet[/wiki], or [wiki]specific carbohydrate diet[/wiki]. Juicing is also growing on me a lot.
- Hydration - Dehydration and loss of electrolytes is common. Proper hydration and adding electrolytes back in can help you a lot.
- Alternative treatments - I'm a fan of Low Dose Naltrexone. Two studies in adults have had great results (see the stuck thread in when following that link) and there are very few side effects. It's also not very expensive. Medical marijuana has been shown to help a lot as well if that's something you're comfortable with and is legally available in your area.
- Stress reduction. Do whatever it takes to reduce your stress levels. In addition, a weekly or even monthly massage if funds are tight is great. Studies have actually shown that massage can reduce inflammation. Give yourself self-massages as often as possible in between the professional ones.
- Exercise if you're able - a gentle yoga is a good one
- Vitamins and minerals - find out which you're deficient in and properly supplement. People with Crohn's disease are commonly deficient in vitamin B12, vitamin D, folate, and magnesium as well as a host of others. But those four first ones should definitely be checked.
- Supplements - there are a variety that help improve overall health. Check our our diet/fitness/supplements forum for ideas.
- Alternative medicine - This could be stuff like acupuncture, including a naturopath in your treatment team, etc.
Bring your doctor in on the conversation for all of this. Get their input and let them help supervise your disease state. Some doctors might need a little push on some of this stuff, but we can provide studies that showcase the efficacy of all the above.
1. In my opinion after reading the ASEA "science" and "Why multi level marketing" tripe, I feel comfortable saying it is a load of crap and they're preying on your desperation in my opinion.
2. Research enteral/elemental nutrition. It HAS been shown, by science, to help people with IBD reduce symptoms and even reach remission. As such, it doesn't need multi level marketing to sell as the tons of people it has helped and countless doctors speak highly of its efficacy.
While I think Remicade is an excellent drug, I can understand your concern and won't try to convince you otherwise. However, Crohn's needs to be hit from all angles. Some ideas:
- Western Medicine - Continue with what you're on
- Dietary changes - Enteral/elemental nutrition as mentioned with a slow transition to [wiki]paleo diet[/wiki], or [wiki]specific carbohydrate diet[/wiki]. Juicing is also growing on me a lot.
- Hydration - Dehydration and loss of electrolytes is common. Proper hydration and adding electrolytes back in can help you a lot.
- Alternative treatments - I'm a fan of Low Dose Naltrexone. Two studies in adults have had great results (see the stuck thread in when following that link) and there are very few side effects. It's also not very expensive. Medical marijuana has been shown to help a lot as well if that's something you're comfortable with and is legally available in your area.
- Stress reduction. Do whatever it takes to reduce your stress levels. In addition, a weekly or even monthly massage if funds are tight is great. Studies have actually shown that massage can reduce inflammation. Give yourself self-massages as often as possible in between the professional ones.
- Exercise if you're able - a gentle yoga is a good one
- Vitamins and minerals - find out which you're deficient in and properly supplement. People with Crohn's disease are commonly deficient in vitamin B12, vitamin D, folate, and magnesium as well as a host of others. But those four first ones should definitely be checked.
- Supplements - there are a variety that help improve overall health. Check our our diet/fitness/supplements forum for ideas.
- Alternative medicine - This could be stuff like acupuncture, including a naturopath in your treatment team, etc.
Bring your doctor in on the conversation for all of this. Get their input and let them help supervise your disease state. Some doctors might need a little push on some of this stuff, but we can provide studies that showcase the efficacy of all the above.
David
Thank you for all of the information, i will defintely try them. Yea I thought the ASEA was a scam too, but desperate to try something. I usually don't fall for these things, but they even had Doctors call me and say what a great thing it was. I would try the medical marijuana, it is legal here, but I am a federal employee, and it is legal according to the federal gov. Anyway I really appreciate all of this information, most I have not heard of.
Thank you for all of the information, i will defintely try them. Yea I thought the ASEA was a scam too, but desperate to try something. I usually don't fall for these things, but they even had Doctors call me and say what a great thing it was. I would try the medical marijuana, it is legal here, but I am a federal employee, and it is legal according to the federal gov. Anyway I really appreciate all of this information, most I have not heard of.
Beccalynn3,I am really sorry you are having such a rough time of it!david offers some great suggestions! I've been on all the routine crohns meds; biologics including first remicade(caused a serious reaction from antibody formation),humira(wasnt that effective),and now changed to cimzia. I was wiped out after my first loading dose of cimzia and won't be having the second loading dose! This is just me but I feel the biologics are nothing to take lightly with the potential adverse reactions.
To be honest, I'm wondering how much western medicine has to offer me these days. But I have always felt ambivalent taking them even being a nurse so I think your hesitation about them isn't a negative thing.
In my perfect crohns world, I would be in remission from diet and any integrative health practices available like massage,Ayurveda,vitamin and mineral supplements. I've done all these therapies and right now, am focusing on nutrition, supplementation,and Entocort(not that effective but does no harm to me that I can see).
I understand wanting to give anything a go if it may help! If someone said stand on your head and play the banjo and your crohns will get better, I probably would! My basic rule is if it doesn't cause harm, I'll give it a go.
Idk, I may need to go back on a biologic to keep it all at bay but I just hated that feeling of extreme fatigue for a day or two after taking it.
As naturopathy isn't legal in kentucky(!) that's not an option for me right now but I do believe that a naturopath could help.
Probably the best I felt was when I did a very low carb, high protein, low fat diet. I felt good for about six months then had another bowel resection due to an obstruction. That was probably caused by the high fiber diet and narrowing in my gut along with some loops of bowel that were kinked.
Keep researching and I think it's great that you are looking into alternative health! Although not curative, I feel these methods improve quality of life.
I can't add any other suggestions as David covered them all I think. With depression, I find if I can get out and surround myself with loving,supportive friends and family, it helps tremendously. Hard to do when things are flaring, but even for an hour, I found my mood would improve. Also, finding funny videos on youtube, reading a good book, doing hobbies,even texting friends when I couldn't leave my home due to diarrhea helped.this forum has really helped too!:headbang:
To be honest, I'm wondering how much western medicine has to offer me these days. But I have always felt ambivalent taking them even being a nurse so I think your hesitation about them isn't a negative thing.
In my perfect crohns world, I would be in remission from diet and any integrative health practices available like massage,Ayurveda,vitamin and mineral supplements. I've done all these therapies and right now, am focusing on nutrition, supplementation,and Entocort(not that effective but does no harm to me that I can see).
I understand wanting to give anything a go if it may help! If someone said stand on your head and play the banjo and your crohns will get better, I probably would! My basic rule is if it doesn't cause harm, I'll give it a go.
Idk, I may need to go back on a biologic to keep it all at bay but I just hated that feeling of extreme fatigue for a day or two after taking it.
As naturopathy isn't legal in kentucky(!) that's not an option for me right now but I do believe that a naturopath could help.
Probably the best I felt was when I did a very low carb, high protein, low fat diet. I felt good for about six months then had another bowel resection due to an obstruction. That was probably caused by the high fiber diet and narrowing in my gut along with some loops of bowel that were kinked.
Keep researching and I think it's great that you are looking into alternative health! Although not curative, I feel these methods improve quality of life.
I can't add any other suggestions as David covered them all I think. With depression, I find if I can get out and surround myself with loving,supportive friends and family, it helps tremendously. Hard to do when things are flaring, but even for an hour, I found my mood would improve. Also, finding funny videos on youtube, reading a good book, doing hobbies,even texting friends when I couldn't leave my home due to diarrhea helped.this forum has really helped too!:headbang:
can you say CORPORATE GREED.