Anyone here take no meds for thier UC? or close to no meds?

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Zippy123
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Date Joined Feb 2009
Total Posts : 735
   Posted 4/18/2009 7:42 AM (GMT -6)   
If so how do you control it? and how did you get to the point of not using any meds if you did at one time?
I know everyone's case is different, but just curious if anyone is managed without drugs at all or close to it.

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5965
   Posted 4/18/2009 7:46 AM (GMT -6)   
     Zippy, I went off my meds last year.  I was on Colazal and 6MP for maintenance.  Within two months I suffered my worse flare ever!  There were a few other things which contributed, I am sure...like eating a crabcake and taking a bubble bath with dollar store bubbles.  Well, I learned the hard way.....take the meds, no crabcakes and NO bubble baths at all.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


suebear
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Date Joined Feb 2006
Total Posts : 5698
   Posted 4/18/2009 8:19 AM (GMT -6)   

Crabcakes and cheap bubble bath?  Interesting......

If you have UC your goal should be to keep the inflammation at bay.  The best way to do that is on maintenance medication.  Allowing inflammation to build is what leads to cell changes and the increase of colon cancer.

Sue


dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Mitzo
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Date Joined Dec 2007
Total Posts : 536
   Posted 4/18/2009 8:27 AM (GMT -6)   
I have been off all meds since the end of Jan., after 7 years of Pentasa and Entocort and blah blah blah. Am now sinking fast and will be back on cortenema today.

23 years of UC which started after quitting smoking. In and out of flares which are usually triggered by antibiotics. Latest issue is endless diarrhea without blood or mucous.

 


AMK77
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Date Joined Mar 2008
Total Posts : 678
   Posted 4/18/2009 8:56 AM (GMT -6)   
Ugh, I wish! My GI knows I don't want to take meds. He said that you HAVE to be on maintenance b/c your condition could get bad fast w/o them. It's better to keep it under control.

I'm reading the book, "The Maker's Diet" and "Patient, heal thyself". I'm going to follow that way of eating and supplements as well as take my meds. Hopefully that will keep me from having to take a higher dose.
31 yr old female currently breastfeeding (weaning so I can start 6mp)
Mild Pancolitis
I've had UC since 2000 but was in remission for most of those 8 years med free
Cannot tolerate mesalamine - starting 6mp soon


Zippy123
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Date Joined Feb 2009
Total Posts : 735
   Posted 4/18/2009 9:24 AM (GMT -6)   
AMK77 said...
Ugh, I wish! My GI knows I don't want to take meds. He said that you HAVE to be on maintenance b/c your condition could get bad fast w/o them. It's better to keep it under control.

I'm reading the book, "The Maker's Diet" and "Patient, heal thyself". I'm going to follow that way of eating and supplements as well as take my meds. Hopefully that will keep me from having to take a higher dose.


AMK, I see it says in your signature thing you went 8 years med free? is that right? did you take herbs or anything?

I just like to go as low as I can on the meds, I think I could be somewhat allergic to 5-ASA drugs, but not positive, as in some ways they seem to help but I get weird side effects as well, I definitely did with Asacol. I also take been high doses of Boswellia, which I think may be helping somewhat as a anti-inflamation herb.

Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 4/18/2009 9:36 AM (GMT -6)   
I was taking a pill daily. My doctor took me off of it in January. I now only take 1 shot of Humira every 2 weeks. That's it! I'm so happy about that. No more daily pill box to keep around. :)
27 year old, Married, Female.
Diagnosed with UC since March 2007

Taking Humira and Imuran since May 2007 (Currently in remission since May 2007)
Taken off Imuran 1/15/09
Only taking Humira.

Can't take Asacol, Allergic to Remicade


AMK77
Veteran Member


Date Joined Mar 2008
Total Posts : 678
   Posted 4/18/2009 11:29 AM (GMT -6)   
Zippy123 said...
AMK77 said...
Ugh, I wish! My GI knows I don't want to take meds. He said that you HAVE to be on maintenance b/c your condition could get bad fast w/o them. It's better to keep it under control.

I'm reading the book, "The Maker's Diet" and "Patient, heal thyself". I'm going to follow that way of eating and supplements as well as take my meds. Hopefully that will keep me from having to take a higher dose.


AMK, I see it says in your signature thing you went 8 years med free? is that right? did you take herbs or anything?

I just like to go as low as I can on the meds, I think I could be somewhat allergic to 5-ASA drugs, but not positive, as in some ways they seem to help but I get weird side effects as well, I definitely did with Asacol. I also take been high doses of Boswellia, which I think may be helping somewhat as a anti-inflamation herb.


Zippy, I did go w/o meds for 8 years. Symptoms started in 2000. Never went to the Dr. then one day the blood and D went away and I was "normal" for 8 years w/o meds. I didn't know I had UC so I never took anything other than a multivitamin. I had cramping and D every once in a while when I was stressed then it would go away. I can't help but wonder if I had been on maintenance meds then maybe I wouldn't have pancolitis, maybe it wouldn't have gone so far? As soon as I'm done nursing I'm going to start on more supplements and L-glutamine. I went to a Naturopath, he said I could go w/o meds but I don't know - better safe than sorry?
31 yr old female currently breastfeeding (weaning so I can start 6mp)
Mild Pancolitis
I've had UC since 2000 but was in remission for most of those 8 years med free
Cannot tolerate mesalamine - starting 6mp soon


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 4/18/2009 12:31 PM (GMT -6)   
What happens to UCers that are either allergic or non-responsive to meds and can't take them at all (including remi/humira)?

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


JingleBell
Regular Member


Date Joined Oct 2008
Total Posts : 80
   Posted 4/18/2009 12:34 PM (GMT -6)   
I have been off meds since November and am actually on my way to remission. I have been on most classes of medications since I was first diagnosed when I was 8. The last medication I was on was a 6-mp and I started to feel toxic so I took myself off of it (with my doctors knowledge) and decided to try alternative methods of healing. I now see an acupuncturist once a week and she has me drinking some type of herbal/ Chinese tea twice a day. Not very tasty but I am seeing definite results. I also take, on a daily basis, omega-3 fish oil, a probiotic, bee propolis, and tumeric pills. I feel better than I have in 5 years (the length of this last flare) and am down to 2-3 BM's a day with no visible blood as opposed to the 10-15 I was experiencing on medication.
This is just my story and I hope you find it helpful.
Good Luck!
 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 4/18/2009 12:39 PM (GMT -6)   
Hey Jinglebell, your regime sounds almost identical to mine with the omegas (I take 3-6-9 though) the probiotics (I use Primadophilus Reuteri) and the bee propolis (which I found to be quite amazing in how it helped with many of my serious symptoms like the bleeding, frequency, stool formation, and severe lower back pain I had but not anymore thanks to the BP). I'm glad you're feeling better than you ever have with your particular regime, the best part for me that I noticed too was no nasty side effects from any of them. I've been doing the bee propolis longer than the other above mentioned, about 5 yrs now every day and my GI urges me to continue with it because it's 100% non-toxic and he doesn't care what helps so long as something does.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


JingleBell
Regular Member


Date Joined Oct 2008
Total Posts : 80
   Posted 4/18/2009 12:48 PM (GMT -6)   
pb4
I also noticed great results from the bee propolis. In fact, I think I got the idea from you in a post that I started when I first joined back in October asking for help on herbal supplementation. So thank you!
 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 4/18/2009 1:12 PM (GMT -6)   
I'm glad you noticed great results too (you are very welcome) others on here that tried it had varied results cuz we are different afterall, but I'm glad it's been working out well for you, are you using the puritans pride brand (500mg caps)? I take one 2X/day what are you taking?

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


JingleBell
Regular Member


Date Joined Oct 2008
Total Posts : 80
   Posted 4/18/2009 1:39 PM (GMT -6)   
I take Premier One (2 capsules per day.) This is the only one offered in pill form through the local health food store.
 


vega19
Regular Member


Date Joined Sep 2008
Total Posts : 91
   Posted 4/18/2009 2:43 PM (GMT -6)   
I flared for the 1st time about 6 1/2 years ago. It was a bad one too. 20+ bm's a day, lots of blood, urgency, pain. I was never diagnosed though. It lasted about 3 or 4 months and went away on its own. The docs kept telling me it was stress and to take a fiber supplement. I went 5 years before my next flare and didn't take any meds or supplements.
31 year old female diagnosed with UC (entire colon) Feb 2008
(4) 400mg Asacol 3x a day
Remicade 10mg/kg every 8 weeks
Omega 3 supp, calcium supp
probiotic


Rhiannon
New Member


Date Joined Jul 2006
Total Posts : 18
   Posted 4/18/2009 2:47 PM (GMT -6)   
Don't stop taking your meds!!! I made this mistake and my doctor got so mad at me. Colitis is a disease that can't really be beat. You have to stay on maintenance drugs. Anyway, that's my advice!!!

Zippy123
Veteran Member


Date Joined Feb 2009
Total Posts : 735
   Posted 4/18/2009 3:08 PM (GMT -6)   
Hmm that Bee Propolis sounds interesting might be worth a try.

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 4/18/2009 5:14 PM (GMT -6)   
Just a warning, if you're allergic to bees then you probably shouldn't (pregnant and breastfeeders should also avoid bee products). According to my GI though, there is no interactions with using bee propolis with IBD meds so that's good for those who are on meds and want to try it as well.

:)


My bum is broken....there's a big crack down the middle of it! LOL :)


Zippy123
Veteran Member


Date Joined Feb 2009
Total Posts : 735
   Posted 4/18/2009 8:33 PM (GMT -6)   
Yeah I ordered some, it is fairly inexpensive. No problems with bee's that I know of, I eat honey all the time.
I still take some meds but trying to cut down to as low as dosage as I can. I would like to quit completely, but I am kind of scared to after reading some of the horror stories of flares from heck after stopping meds.

subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 4/18/2009 9:56 PM (GMT -6)   
I'm med free.

I control my symptoms with Probiotics and diet.

Currently, I have no symptoms of Colitis.

The Colitis medicines stopped working for me early on. Many of them also harm the kidneys. I see no reason to take them.
Joy - 47 yrs and counting
Colitis Dec 06 (also have IBS)
Currently in remission
Don't expect your doctor to cure your health problems. Your health is your responsibility.

Lexapro (for stress), Probiotics and Vitamins (a whole bunch of them)
Avoid HFCS, foods high in fructose, artificial sweeteners
When flaring: eat anti-inflammatory foods, avoid pro-inflammatory foods
Previous treatments: Fecal transplantation (worked), Prednisone (stopped working), Colazal (stopped working), Asacol (stopped working)

Post Edited (subdued) : 4/18/2009 9:59:57 PM (GMT-6)


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 4/18/2009 10:06 PM (GMT -6)   
Zippy123 said...
Yeah I ordered some, it is fairly inexpensive. No problems with bee's that I know of, I eat honey all the time.
I still take some meds but trying to cut down to as low as dosage as I can. I would like to quit completely, but I am kind of scared to after reading some of the horror stories of flares from heck after stopping meds.
Did you order from puritans online, vitashop sells it too I believe, but I think the prices for both places are fairly comparable, I like puritans cuz they almost always have good sales like buy one and get 2 free, that way I can stalk up.  I heard about the BP from a poster at another board (once in a blue moon he visits here at HW too) it put his crohn's right into remission and he stopped taking it after he reached remission and has gone about 4 yrs now med and BP free...so it seems it can do amazing things for some peoples IBD.  I always say though that chances are at this point nothing is 100% and IBD does tend to have a mind of it's own too (it seems that it can come and go as it pleases, meds/naturals or not) although I personally think the meds/naturals may still be better than nothing at all...we're all individual when it comes to complete symptoms, severity and behavior of our disease too.
 
Good luck with it and be sure to update.
 
:)
My bum is broken....there's a big crack down the middle of it! LOL :)


mudua
Regular Member


Date Joined Apr 2007
Total Posts : 459
   Posted 4/19/2009 4:50 AM (GMT -6)   
The cost of a months supply of medications for UC is about 85% of my monthly salary and so I cannot afford it anymore. Also in South Africa you get booted out of any medical aid scheme if you have any chronic illness. 90% of South Africans cannot afford drugs and so we depend on herbs which are way cheaper.

Nkosi sikelele Africa (God bless Africa)

notshure
New Member


Date Joined Apr 2009
Total Posts : 6
   Posted 4/19/2009 6:12 AM (GMT -6)   
has anyone heard of mln002
single father uc for three years
on pred 40 mg
sulfasalazine 4000mg
nexium 80 mg


Cfromutah
Regular Member


Date Joined Mar 2007
Total Posts : 369
   Posted 4/19/2009 7:52 AM (GMT -6)   
I have been in med free remission for three years. All I did to get in and stay in remission is increase my intake and regularly eat more nuts and seeds such as sunflower seeds, peanuts, walnuts almonds etc and or nutbutters such as peanut butter and sunflower seed butter. And increase my intake and regularly eat foods with beta carotene such as spinach and carrots. Before I got in remission from this I was in a severe flare for two years non stop in which I tried many medications and none put me in remission. Sunflower seeds and spinach did.

Zippy123
Veteran Member


Date Joined Feb 2009
Total Posts : 735
   Posted 4/19/2009 8:50 AM (GMT -6)   
Yeah I been eating sunflower butter and seeds and spinach a 1/2 cup least once a day. If nothing else it is good for you even those without colitis. I been eating carrots for a while too, great source of vitamin A and I like them steamed as a side dish.


Pb4:
I ordered the NSI brand of bee propolis, but I will see how things go and consider the same brand you get. I'm not dong to bad as is, but can't quite seem to get bleeding to stop permanently. If any little thing could push me into complete remission I would be so happy.
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