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04-18-2012, 06:43 PM   #1
musicislife52
 
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Join Date: Apr 2011
Location: New Hampshire

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Drug-Free?

Are any of you Crohn's-drug-free, and how long have you been? What are you doing to stay off of them that really works for you? Supplements, exercise, diet, etc.
__________________
Crohn's Disease - Significant Narrowing in Ileum - 25 years old - Diagnosed '07
Lactose/Gluten Intolerance
Myofascial Pain Syndrome

Currently taking:
Whole foods multivitamin
Probiotics (including homemade sauerkraut and kombucha)
Digestive Enzymes
Sublingual B-12 spray
Tumeric Curcumin

Have taken:
Entocort - summer 2011/2013
Pentasta (up to 4g) - until 04/12/2011
Prednisone
Protonix
04-18-2012, 11:15 PM   #2
mickey
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Join Date: Dec 2011
Location: Illinois
I have been drug free almost since diagnosis over 11 years ago. I was put on 2 or 3 meds when first diagnosed and while I felt some reduction in abdomen swelling/discomfort, the issues were still there. Against docs' wishes, I discontinued meds and began a search of natural ways to deal with it. Not easy, but a continual journey.

I found an eastern/western doc in Chicago who has helped me a great deal. She gave me herbs for the bely and I used a great massuesse for the first few years quite often. He helped me listen to my body and learn how to deal with pain/cramping/inflammation. He told me to begin daily (and often) belly rubs (beginning on right side of navel, up and down around under the navel and back to the right. When I have had bad cramping or pain, my husband will continue to do them until it eases up. He explained it will bring blood circulation to the area and is massaging the ascending colon (right side) and descending colon (left side). Works wonders for me.

Yoga has been great. I am now doing the Body for Life program (workout, not dietary), which has worked well for me in the past. I think the key is to listen to your body and ease up, if need be. However, I do push myself to keep it up, since I know overall it will certainly make me feel better.

I take a daily multivitamin, folic acid, ALWAYS Vitamin D, Calcium...and Natren Healthy Trinity probiotics. If I am having a bad stretch, I will increase the probiotics up to 5. Eastern/Western doc informed me there was a study by a doc (Borgenchev or something similar, have to look it up) that showed GOOD probiotics helpful in reducing symptoms of Crohns and colitis.

I am also addressing diet to reduce/eliminate sugars, carbonation, now teas (except for ginger tea). I am convinced our diet and poor choices have a negative effect on our health. Not saying they cause a particular disease, but they can certainly make it worse. The Eastern/Western doc believes that food is more of a dangerous drug than pharmaceutical drugs; she is convinced it causes many side effects. A theory to look into...

Everyone is different, but if we can glean something here and there from someone it is one step closer to feeling better! Hope something may help!
04-19-2012, 01:14 AM   #3
archie
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Join Date: Oct 2010
Yes I am drug free, when first diagnosed I was in a bad flare they put me on pentasa and pred for about 6 months however I ended up needing surgery as the inflammation had caused irreversible damage and they were never going to sort it, although they did make me feel better at the time. I was never very keen on taking medication which both my GI and consultant knew so after the surgery they took me off everything and said they'd review me which I'm happy about, they know I've my head screwed on medically and yes I certainly am not against taking them to keep me right but at the moment I am still in remission 1 1/2 yrs later and drug free. I manage it by exercising, not smoking and generally eating the right food. I still drink alcohol and have days I eat what I want which can affect my tummy but usually short lived. I know some people say I'm mad not being on maintenance drugs but I'm very happy not to be and willing to take the risk- if it ain't broke don't fix it!! My last colonoscopy showed minor inflammation with a few ulcers but no active crohns and I feel good.
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Archie

Diagnosed Crohn's 2010
ileocecal resection 2010
Meds: Nil and in remission

04-19-2012, 02:28 AM   #4
maria
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Join Date: Jan 2012
Location: van, Washington
I'm not on anything important just tons of vitamins.. I use to be into not taking anything.. Which is probably why I'm in the spot I'm in now... At this point now my mind set is if it's gonna help me I'm willing to give it a whirl..
__________________
Ileostomy from UC but doctors are now thinking crohns. Since Feb 14, 2011


I want to find a friend here in vancouver, washington with a stoma... I feel lonely.
Trying to stay gluten free.
04-19-2012, 05:31 AM   #5
KWalker
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Hey, no drugs here. I just eat healthy. I've been off drugs since late 2010 and truthfully I don't feel any different than when I was taking them. I personally don't feel my crohns is bad at all but my doctor says its active and says I should go on medicine. To me, its not worth the risk with the dangers of medicine when I'm having no problems without them. I do whatever I want, and I feel great without medicine.
__________________
Diagnosed:
Age 2 (1992)

Previous Meds:
Prednisone
Remicade
Humira
Methotrexate (oral)
Methotrexate (injections)
Cipro
Flagyl

Current Treatment:
200mg Simponi, Psyllium
04-19-2012, 04:48 PM   #6
nogutsnoglory
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Location: New York

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No drugs but starting to flare and think I need to be on something.
04-19-2012, 04:50 PM   #7
KWalker
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For those not on medicine, are you all in remission or does your doctor say your crohns is "active"
04-19-2012, 08:19 PM   #8
archie
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Join Date: Oct 2010
In remission scope didn't show active crohns and all blood tests normal since my resection. I still get good and bad tummy days but more like IBS now. If I had active crohns I would take meds depending on the severity. Like you i don't like the side effects and long term effects of meds I would have to weigh up the risk verses benefit, your damned if u do and damned if u don't!!
04-19-2012, 08:23 PM   #9
KWalker
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Exactly. I figure I'll take my chances right now. If my crohns gets worse so the benefits outweigh the risks than of course I would take medicine but right now I don't see any benefits. If it gets out of control, that's when I'll go on medicine.
04-20-2012, 07:35 AM   #10
Miss Spencer
Senior Member
 
Join Date: Sep 2010
Are any of you Crohn's-drug-free,
Yes
Drug free
Over seven years now.
But not diet restriction free
But this is a very small price to pay for: MY LIFE AND SANITY BACK !!!
04-20-2012, 07:41 AM   #11
KWalker
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Miss Spencer - are you in remission or does your doctor say your crohns is active?
04-24-2012, 12:37 PM   #12
mizgarnet
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Join Date: Dec 2010
Location: spartanburg, South Carolina
No drugs! Just diet, stress relief, and natural supplements. I have been drug free most of the time. I had to do pred. in 2008 and I gave 6mp a whirl. 6mp made me worse. No drugs since 2009. I am in remission. Yay! I did not go into remission until I changed how I eat. Not always easy but so worth it.
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DX'd - 1991
04-25-2012, 12:10 PM   #13
bangarang
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Join Date: Nov 2010
Location: New Jersey
No drugs or doctors for over 3years now. Dairy free, gluten free, 95% meat free(still cant resist those california rolls!), junk free. Low fat, high carb whole food plant based diet. Juicer or a good blender can be your best friend.
04-25-2012, 12:29 PM   #14
Sarai81321
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Join Date: Apr 2012
Location: Prague, Czech Republic
Since my diagnosis last year, I've been on Pentasa, Entocort and Humira, then I had an ileocaecal resection this January. My doctor advised on starting Imuran afterwards, because the inflammation was supposed to be aggressive according to histology, but I couldn't tollerate it, so I'm now drug-free and waiting until colonoscopy in summer.

My doctor said the only drugs that were successfully tested to maintain remission are Imuran and Remicade, nothing else. So if you are in remission, it's kind of wise not to take anything, it's just important to do your check-ups to catch any changes early enough.
05-01-2012, 02:29 PM   #15
musicislife52
 
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Location: New Hampshire

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@mickey - which herbs do you take? I do belly massage too and find that helps my regularity and pain a lot! Hooping is great for massaging your abdomen area too, along with yoga to help stretch that area out.

@bangarand - maybe try veggie sushi instead! I love avocado, cucumber, and carrot in mine with ginger on top. Dessert sushi is really good too. Use fruit instead!

@everyone else! - what are the diets and supplements you have had real success with?

I'm taking a whole foods multivitamin and a probiotic right now (I need to re-start flax oil..). No drugs except birth control (which is probably not good for my intestines...). I'm vegetarian (over 6 years now!), eat mostly vegan, and try to drink a big green smoothie everyday (made in my Vitamix, which blends through seeds so I don't have to worry about them scraping my intestinal walls!). Ripe bananas are super gentle and filling. Peppermint tea is extremely soothing for me if my GI tract is upset. I do yoga/hoop and lately have been getting back into bike rides and walks. Once my semester is over, I'm going to start hiking as often as I can handle too. The more I exercise and the more whole foods I eat (and the less processed garbage I eat), the better I feel. I think lack of sleep has been flaring me up a lot lately, so I really need to work on that.. I still drink a bit, but it's hard being young and seeing your friends having a blast and not joining in.. Plus, I love a good beer! Ughh haha.
05-02-2012, 10:42 AM   #16
mickey
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Join Date: Dec 2011
Location: Illinois
I no longer take herbs; I seemed to have needed them in the early days, but no longer. I can't remember what they were, but I remember her telling me it was to balance my belly. They were not a probiotic. I remember the health food store, but it has been over 15 years, so can not remember.

I take a daily multi food-based vitamin, calcium, Vit D, probiotic, folic acid. If having any particular trouble, will add in digestive enzymes, but the probiotic seems to have made a great difference.
05-07-2012, 03:52 PM   #17
hannah-rose
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Location: Bedford, United Kingdom

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I can see how diet would have a fantastic effect in your symptoms are all intestinal but my inflammation occurs in my anus and possibly rectum so do you think a certain diet would help? Unless certain foods had anti-inflammatory properties I don't know how foods would effect the inflammation in and around my anus. I'd give it a try though.
__________________
Hannah

Diagnosed 2011
Current meds: 6MP and plenty of exercise!
Previous meds: Metronidazole, Infliximab, Humira, Azathioprine
05-08-2012, 01:35 AM   #18
wolfem
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Join Date: Feb 2010
Location: Tucson, Arizona
Drug free since March 2010. Pentasa made me sick so I decided to do natural stuff. I just ate anti inflammatory foods and herbs. Worked great. I occassionally get abdominal distention but then again, I had a resection so that's common. The only thing I deal with is gastritis. All imaging and blood tests show crohn's is in remission.

I put butter on everything because currently my cholesterol is too low...
I guess I eat too healthy.
__________________
DX: 2010 Crohns (in remission), gastritis/acid reflux, TMJ and goiter
SX: Terminal ilieum resection
Past meds: Prednisone (short term), Pentasa
Current meds: Sertraline, Seroquel, Lorazepam (as needed)

Supplements: Trace min EOD, Fish oil, calcium+D, B12 sublingual + B complex, goat yogurt



05-08-2012, 01:50 AM   #19
wolfem
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Join Date: Feb 2010
Location: Tucson, Arizona
I can see how diet would have a fantastic effect in your symptoms are all intestinal but my inflammation occurs in my anus and possibly rectum so do you think a certain diet would help? Unless certain foods had anti-inflammatory properties I don't know how foods would effect the inflammation in and around my anus. I'd give it a try though.
Here are a few websites. The one on the bottom is used by typing in a food and then search.

http://www.drweil.com/drw/ecs/pyrami...odpyramid.html

http://nutritiondata.self.com/
05-08-2012, 09:40 AM   #20
mnsun
Senior Member
 
Join Date: Nov 2011
Before taking quality probiotics and cutting out almost all sugar, I had rather persistent perianal tags--even while entertaining Pentasa/Imuran for a year, or so.

After quitting hfcs(corn syrups) 100% and almost completely avoiding white sugar, in favor of stevia extract (haven't tried powdered erythritol)and occasional honey in conjunction to adding quality probiotics, I healed those tags/hemrhoids rather quickly.

If I stop taking probiotics for 3 days, I notice a slight return of these symptoms though.
__________________
"Give away the stone. Let the oceans take and transmutate this cold and fated anchor. Give away the stone. Let the waters kiss and transmutate these leaden grudges into to gold. Let go." MJK
05-10-2012, 08:21 PM   #21
M2M
 
Join Date: Apr 2011

My Support Groups:
I love to see where there are so many of you out there that are doing drug free. my daughter is off all prescription medicines right now and has been since october. she does take quite a few supplments from Marketamerica; OPC3 and a multi vitamin and Omega 3 and a digestive enzyne. she avoids high fiber foods and has done really well..
05-17-2012, 01:39 PM   #22
hayling
New Member
 
Join Date: Dec 2011
Drug free for over a year. SC Diet.
02-23-2016, 11:47 AM   #23
leishawnh
 
Join Date: Jun 2015
Miss Spencer - are you in remission or does your doctor say your crohns is active?
My crohns was active and I was in a lot of pain when my doctor set me up for remicade treatments. My insurance said no, I had to try other cheaper drugs firts. So my doctor prescribed Prednisone. I thought the whole thing was fishy, especially after I asked if dietary changes would be helpful and he shrugged and said "eh, if it hurts, don't eat it". I went to a naturopath and started the SCD diet. I was symptom free in 2 weeks and have been ever since. I've heard that a large percentage of crohn's patients eventually succumb to kidney failure from years of medication, and now my aunt is in the ICU with renal failure. I would much rather completely change my diet now than take steroids until I die at age 50.
05-17-2016, 05:12 AM   #24
scl
Senior Member
 
Join Date: Jul 2011
Crohn's for 33 years +
Have had four doses of medication EVER
Medication free

I've had undiagnosed Crohn's since I was somewhere around 18-20 years old (I remember being on my parent's health insurance the first time I saw a doc for my Crohn's symptoms.)

Thirty-three years later diagnosed at age 53 with a blockage. Received two doses of prednisone in the hospital and then two doses of Remicade.

Had a 9 cm bowel resection a few months later after being on the SCD for 4 months until it became obvious I needed surgery. The GI doc and surgeon expected "widespread damage" due to the length of time between symptoms and diagnosis with no meds. The first thing my surgeon said upon awakening from anesthesia was how amazed he was that there was only that 9 cm stricture. He hand inspected every last inch of my bowel and found no strictures or thickening.

Following surgery both my GI doc and surgeon recommended I stay off medication as they felt I had managed my disease well.

I have always eaten healthy as an adult, moved towards a vegetarian diet over the years and am now vegan for a year.

I have no symptoms or clinical signs of disease.
__________________
Diagnosed: 2011 (age 53, 30 years of chronic diarrhea)
Surgery: bowel resection 11/2011
Previous meds: none
Currently on: No medication
Supplements: probiotic, bone health supplement, Vitamin K2, Vitamin D
05-19-2016, 07:14 PM   #25
earthshine
Senior Member
 
Join Date: Jun 2015
Hi Mickey would you mind sharing your Drs name? Thx
05-19-2016, 07:21 PM   #26
earthshine
Senior Member
 
Join Date: Jun 2015
I can see how diet would have a fantastic effect in your symptoms are all intestinal but my inflammation occurs in my anus and possibly rectum so do you think a certain diet would help? Unless certain foods had anti-inflammatory properties I don't know how foods would effect the inflammation in and around my anus. I'd give it a try though.

Any success? I was wondering same thing
05-22-2016, 08:27 PM   #27
drewpalermo
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Join Date: Nov 2013
Location: Rochester, MN

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Definitely don't take drugs. I used to for years to keep my Crohn's inflammation in remission (Purinethol), since maybe 2011/2012 I stopped taking them and went hard with organic/whole foods. Diet seems to be the key player here.

I get and still get my omega 3s from canned sardines (3-4 each week), plenty of cooked vegetables (sweet peas, rutabagas, chard/collard greens, celery root, sweet potatoes, golden beets w/ either broccoli or cauliflower, leeks, and onions.

Certain supplements along with my diet allow me to absorb more of the nutrients from the food I eat- ox bile and pancreatin as digestive aids, TMG (trimethylglycine), plus kelp (for iodine needs), magnesium citrate, and I have organic corn in various forms (blue corn chips, popcorn), for when I get that junk food craving (blue corn is great for selenium). Otherwise I'll buy a pound's worth of organic dried cilantro leaf, parsley leaf, and dill weed to cover my cooked sweet peas and sweet potato dishes with.

Oh, and each day I'll have 10-12 ounces of freshly juiced carrot juice with a little bit of ginger added.

Another big one is staying away from any sugary foods, this even goes for fruit and honey. I'd rather save my appetite for cooked vegetables.
05-22-2016, 09:04 PM   #28
earthshine
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Join Date: Jun 2015
Can I ask you about sugar from fruits? Do you notice an affect? I eat fruits often and seem to tolerate throes which are low fodmap ok

Has the diet helped with inflammation in rectum area?
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