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Posted 8/20/2008 2:40 PM (GMT 0)
Ok so I have been sick with a virus that has caused me to go off of the Humira for a month now and I don't know when they will allow me to go back on it.  In the mean time I am looking for alternative methods.

Has anyone tried accupuncture? If so did it work? How long? Opinions?

I am really willing to try anything but my husband said its expensive and doesn't want to try something that might not work.. He wants me to treat myself with medication because he does not want me to end up like my grandfather (colostomy bag) and I don't either, but I also want to have a family and all these immuno suppressants open me to many different viruses that are bad and could harm me when I'm prego.. so I wanted to try a new method for at least the next 2 years.. please any advise? any help?? I am more then willing to take it..

Posted 8/20/2008 3:51 PM (GMT 0)
Well in order to become pregnant most Gi's and OB/Gyn's want the mom to be in remission and healthy. And you can't be that way if you stop taking your medications. There are few new mom's and expecting mom's on this board that have had successful pregnancies and healthy babies while on things like Imuran, Pred, Remicade and Humira.

I tried acupuncture before when I was having alot of lower back pain. Didn't do anything for me. Just my opinion. I agree with your husband, it is very expensive. Good luck!
Posted 8/20/2008 4:33 PM (GMT 0)
I go to acupuncture twice a week and have since the middle of February.  I love it.  I have told so many people about it and now some of them go regularly.  I just feel better when I go.  My Acupuncturist is also a TCM Dr.  So I have also taken some herbs.  He has treated me with acupuncture for CD, Hemroids, joint pain, nerves (due to coming off of pred.), hair loss, and my eustation tubes in my ears get stopped up and he puts needles behind my ears and they drain immediatly.  I take an elderly lady with me and he has helped her a ton with arthritis.  She said she can actually take a step now without pain.  I would give anything if I could have met my Acupuncturist before the Humira.  Now I am afraid to come off and do just this because my body may build antibodies to the Humira.  He also told me that doing acupuncture would help my immune system.  He said it would not cause my body to fight itself though.  I started Humira at Flu season and I did not catch anything.  The price that I pay is $60 if you go once a week and $100 if you go twice a week.

Posted 8/20/2008 4:49 PM (GMT 0)
I actually just started looking into this & am seriously considering going. can anyone rec an accupunturist in NYC?
Posted 8/20/2008 4:55 PM (GMT 0)
Someone that previously worked for an acupuncturist in Atlanta told me to check with The American Academy of Medical Acupuncture.  Also I forgot to do spell check before.  I realize I had some oopsies.

Posted 8/20/2008 11:44 PM (GMT 0)
i try to do it monthly. i'd do it way more often, but it is expensive and my ins doesnt cover it. it helps for little things, but not for crohns, imho. however i feel like million bucks afterwards and stress and anxiety etc are gone.
Posted 8/21/2008 12:53 AM (GMT 0)
I do believe it helps with my CD.  I feel like when I miss an appt. or two things change for me.  For me it's not just little things.

Posted 8/21/2008 2:03 PM (GMT 0)
ddr030505 -

I was a complete skeptic when it came to acupuncture... until I tried it. My pain level went from a solid 7 down to a 2. I could feel the area of my pain warming up while the needles (which do not hurt at all) were in. It is 60.00 per session. As soon as I get a job and have income, I plan on doing this again on a regular basis, along with the herbs. I am now a believer!!

Good luck to you.
Posted 8/21/2008 3:40 PM (GMT 0)
You guys are making me excited to try this.
If something can help relieve symptoms & feel better its def worth a try!
Posted 8/21/2008 4:15 PM (GMT 0)
I go to acupuncture once a week for my joint issues. I pay $15 at the clinic where I go. Supposedly there are clinics like this one all over the country where depending on how often you go you pay any where from 15 to 35. The idea being that they would like you to go more often so that you can achieve better results. I don't really think it does anything for my CD, but it does help my joints a ton. I went in a huge skeptic, so for me to believe is incredible. But, I would NOT stop taking my CD meds in favor of acupuncture. I go because I can't take the arthritis/joint meds and this was the alternative that my Rhuemy had to offer. It might be able to help in conjuncture with your other meds.

You could do a search for acupuncture clinics in your area. I believe what you would search for is "community acupuncture". It isn't as private as some facilities but it is much more affordable. The clinics are set up so that you are sitting in lounge chairs with curtains or screens betweens clients and you can usually hear the other patients speaking to the acupuncturists but there is music playing in the background and the setting is soothing. I will give up some privacy so that I can go once a week and keep my joints from flaring instead of paying 60 - 100 and only be able to go once a month and not be able to walk up a flight of stairs.

Good luck
Posted 8/21/2008 6:35 PM (GMT 0)
ok well i set an appointment up for next wednesday.. I am work at a hospital and they offer it here (and thankfully my ins said i only pay a 35 dollar copay everytime.. )that is nice.. so I am very positive about this and excited to try the new methods.. Thank you so much for your advice.. and i am also going to look into herbal stuff. Did any of the acutpuncturist you spoke with tell you any advice for dietary things?? (ie. hemp oil, cod liver oil) things like that?
Posted 8/21/2008 8:54 PM (GMT 0)
My acupuncturist does herbs also. I tried them. He kept telling me they didn't taste very good, which they don't. But, I'm a CDer, so I'm used to things tasting bad and still being able to get them down. My problem was that I kept burbing them, like for hours. And that just wasn't going to work for me. So after a few weeks, I gave up on them.
Posted 8/22/2008 12:18 AM (GMT 0)
Zanne -

Great information. I need to look into the clinic so that I too can go more frequently.


ddr030505 -

The herbs were rather different. Had to mix them together in a crockpot and boil them. In addition I was given a powder and told to put a small spoonful in each cup I drank. The herbalist/acupuncturist did suggest that I get off sugar and my coffee... to which, I politely responded that those were my two vices. She gave me some herbal pills to stop sugar cravings, and they seem to be working.
Posted 8/22/2008 12:29 AM (GMT 0)
I have been drinking religiously the herbal mix for the past 13+ years.  It does not  cure my disease, but it helps.  It is the only medicine I take.
Posted 8/22/2008 3:36 PM (GMT 0)
Again, My Acupuncturist is a chinese herbalist as well and yes he did change my diet.  He took me off of gluten, dairy, sugar and also gave me lists of things to avoid.  He believes in the Eat Right For Your Blood Type Diet.  I have been going by this and I really like it.  I passed the book along to some friends and they like it as well.  They figured out things that had been bothering them were listed in the book for them to avoid.  I realize all diets aren't for everyone but I like it.

Posted 8/22/2008 5:29 PM (GMT 0)
You all are really helping me feel more confident about this new way.. I just got my labs back and it stated that the CMV levels were still the same which according to what i read "Chronic CMV infection (where the antibody count stays about the same over time) can become reactivated in a person with a suppressed immune system.".. So I know now that I really dont want to risk Humira again right now.. and herbal is so much better for my body.. Thank you so much for your advise.. I really hope my acupuncturist can help me with these options you all have listed.

Euridite Paul- have you really gone 10 years? Have you had any major flares or all just mild? that is amazing...
Posted 8/22/2008 9:00 PM (GMT 0)
Hiya,

My advice to anyone seeking alternative medicines, is to first buy this book.  It could save you tons!!

The Desktop Guide to Complementary and Alternative Medicine (An evidence-based approach)

Editors are Edzard Ernest, Max H Pittler and Barbara Wider.

At a local Crohns and colitis support group meeting an acupunturist came and gave a talk.  He suggested getting this book.  It compiles the information for only 'good' studies.  They have to be completly non-biased and uses only reliable studies.  Worth its weight!!

All I can say is that if you want to not be on meds, it is possible.  I have been able to not be on meds (well was on tons of meds before I was properly diagnosed and all the pain relief they had me on was NSAIDS) since diagnosis.  I tried pentasa for 1 week, that was as long as I could stand the fire hot ass burning side effects! :o)

Work closely with my GP and specialist to manage my disease without meds.  It is working for me. I take meds regularly actually, just not what you would expect.

Hope the acupuncture helps you.

Amy

 

Posted 8/23/2008 10:23 PM (GMT 0)

ddr030505 said...
You all are really helping me feel more confident about this new way.. I just got my labs back and it stated that the CMV levels were still the same which according to what i read "Chronic CMV infection (where the antibody count stays about the same over time) can become reactivated in a person with a suppressed immune system.".. So I know now that I really dont want to risk Humira again right now.. and herbal is so much better for my body.. Thank you so much for your advise.. I really hope my acupuncturist can help me with these options you all have listed.

Euridite Paul- have you really gone 10 years? Have you had any major flares or all just mild? that is amazing...

      I have taken Chinese herbs for about 14 years straight.  There have been ups and downs in those years, but I do not think I have any "major flares" in those years.  Today I have some minor flares, as I had 4 BM today and I had to take some Chinese anti-diarrhea medicine.  I have health insurance here in the States, but I only use it for diagnostic purposes, not for treatment.  I was talking with my wife today. I wish I were in Beijing now, because I would have had access to the medicine that I need.  But I could not find a suitable job there for the long haul.  So it is tough.  If I used the Western Medicine from the start, I probably would have had been in much worse shape, something I firmly believe.

  

Posted 8/28/2008 5:52 PM (GMT 0)
Paul, what is this herbal mix called? Where to get it? Did your GI approve of it?
Please give me some more info about it...
Thanks, VIOLA
Posted 8/28/2008 8:57 PM (GMT 0)
I live in China. What are the herbs that you can get here but not in the US. Do you have the names in characters and what they are good for?
Posted 8/29/2008 12:25 AM (GMT 0)

teezy369 said...
I live in China. What are the herbs that you can get here but not in the US. Do you have the names in characters and what they are good for?

I grew up in China and know a lot about Chinese herbal medicine.  But I am now working and living in the States.

According to Traditional Chinese Medicine, every Crohn's patient should have customized herbal prescriptions, depending on his/her specific symptoms, the duration of the disease, etc.  For example, my primary symptoms are diarrhea and abdominal pain.  The doctor listened to me, felt my pulse on my wrist, and looked at my tongue.  He believes I have a weak "Spleen" (which relates to digestive organs in ancient China) and the "air/gas" is not moving smoothly in my body.  So my prescription is primarily targeted at strengthening my "Spleen" and moving the "air/gas" in my body.  Mordern medicine theory has confirmed that the selective herbs which target "Spleen" could boost one's immune system.  Imported herbs in the US are no good, since they have lots of preservatives.

My GI is also interested in the exact ingredients of the herbals.  I just do not know how to translate.  There is one thing that I know:  the herbs have minimal side effects.  Some Chinese have taken herbs for over 20-30 years.  My health insurance does not cover herbs.  So I have to pay those out of my pocket. 

One caveat: if you already have had a part of your intestines removed, Chinese herbs may not be so effective.

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