Anybody have/had success with managing UC using alternative treatments?

I see that most everybody in the forum talks about pharmaceutical drugs and surgery. Anybody do any heavy duty exploration into alternative medicine to help manage UC? I'm finding a lot of good info and explanations as to why I have the "disease" with ayurveda. Found some awesome info regarding Chinese Medicine as well. I believe I'm finding success following certain treatments. Time will only tell but I feel as if there is so much more out there than what the GIs are talking about.

All of the drug therapy only covers up symptoms and not the cause. That's why I think there's a lot of recurrences in flare-ups even after being on maintenance meds that are supposed to work long term. Getting to the root cause is where, I believe, we can all heal ourselves. But these root causes may entail changing lifestyle and behavioral patterns and habits that we have been accustomed to since birth. Recognizing that and then following a path to change it for the better may also be too hard for a person to do...thoughts?

I should've stated finding alternative treatments in conjunction with western modalities, as in taking meds. I just wonder if people rely solely on medication and for some reason it stops working for them and then their backs are up against the wall. But in the meantime, there might have been no real effort or clue, per say, to have modified ways of their lifestyle to accommodate staying in remission. I'm not trying to downplay the effects pharmaceuticals have in relieving UC. I have been and still am at the mercy of them when it comes to remission. I'm just wondering if people who have attained remission changed anything about themselves to help themselves maintain remission or does life just continue as if UC never happened...

Hi Folks..

I have had UC for over 40 looooonnnngggg yearsssssssssssssssssssss I am 60 now and got hooked up when I was 18 When first DX the Dr's kept asking if any other relatives had it. I didn't know of any. Later in life a first cousin of mine got it. And further on down the road my mother winding up in the hospital as a result of toxic megacolon, chrons related. She was 50 at the time. You never know!...For me a cort enema's stop a flare right in it's tracks. I stay on maintenance of 5-ASA's, sulfasalzine...I have used lomotil as needed. When first dx it was more of a sigmoid and rectal problem...Over the years it has moved uptown.

When I see people who think meds are not needed it drives me bonkers...Toxic Megacolon is nothing to fool around with. It almost killed my mother.. One cannot always avoid it but not taking meds is a good way to invite it. Yes colon cancer is also a good reason to try and keep the inflammation down. My mom was just dx, with stage 11. Did I mention she decided 5 asa's were not necessary to take. Did this cause the cancer, don't know. Will never know. But she will be taking the sulasalzine again...She was treated for Chrones by the same Dr that treated pres bush's son. He was not pleased when he found out she went off the sulfar..

I wish 40 years ago there was the web and people could help each other out and vent. It would have really helped me...

Rod

Well, we can't actually treat the cause can we because no one knows what causes this, correct? Sorry if my thinking is way off but that's the way I look at it.

But...in regards to alternative meds...I do agree with the probiotics, anti-inflammatory diet in conjunction with the meds...as few meds as possible of course. I think these things work well together. But that's just my opinion.



RJD...as far as families...my grandpa and one of my aunts has/had UC and my Dad had 2 different auto-immune diseases...so for me, I'm feeling like this is genetic. But there's worse things I guess so I'll just hang in there.

Thanx Fruitgirll,

When I was first dx prednisone, cortenema and sulfar drugs was about it. They didn't even recommend maintenance meds. Which explained why my flares occurred more often then they do now. Back in the day they thought stress caused this condition. I was under alot of stress when the beast raised it's head. I had just started college and took it seriously. Of course there is no doubt stress plays it's part in UC. I think we all realize stress will feed the beast.

That young lady that just had the baby who bleeds and will not take meds because she is nursing. Does she plan on taking the baby to the hospital with her when things get out of hand..????...

Now don't get me wrong I have done many things in my life that were not in my best interests...smoking for 25 years is at the top of my list...yes I did quit 12 years ago but I should have never started...When you take that first drag and cough like hell it's telling you something. Kinda like bleeding, no..?..

Back on topic..Over the years I tried several mesalamine products. Good old sulfar pills work the best. The old line drugs still work on me. If they stop I will move on. However I draw the line on fecal transplant. Sorry folks that is pushing the envelope alittle too far for me. I have enough of my own sh** to deal with ...

I've used yoga, including pranayama (breath work), self hypnosis, "the work" by Byron Katie, living in the present as described by Ekhart Tolle, and guided imagery.  I've also tried various diet changes, including cutting out dairy and the spinach and sunflower seed.  All of them may have seemed to help at the time, but the bottom line is I got worse since I was diagnosed.

I don't know if the mesalamines have helped me, but I have no doubt that dreaded prednisone has brought me some relief and I have very high hopes for Imuran (which I've currently stopped, waiting for better liver tests so I try again at a lower dose.)  Drug therapy may not be take care of the cause of UC, but if drugs can get our colons into clinical and symptomatic remission, I can't imagine not using them.  It can't be good to be in these long flares with the pain and damage that goes on with active UC.      

There isn't a very good bridge between Eastern and Western meds at this point, and I wish there were.  After a bazillion hours of searching on the net, I found two doctor, MDs, I'd even consider consulting who also do homeopathic meds, in the entire Denver/Boulder area.  And they aren't even GI specialists, just appear to have experience with holistic medicine.  I have no clue how much they cost or how they practice, but I might try one if I get to the point of needing surgery.  Since I have an HMO, though, it would be all out of pocket.      

I'm just curious and asking seriously, what do you mean by lifestyle and behavioral change?  How would you change your lifestyle?  Have you talked to a holistic practioner who suggested any specific change? 

    

 

I think you said it, Burli. In the end we're all different. But I guess we all just share what might've worked for us because, in the end, we're pretty compassionate about what others go through in coping with UC. It always feels good to help especially when one's experiencing improvement and success. It's somewhat natural to share that with others who might benefit from it.

POTATO--I've looked into ayurvedic medicine and have talked to several practitioners regarding my dosha or my constitution about what what I can do to help alleviate the digestive disorder. Don't know if you've researched much into ayurveda but to spare a lot of typing and explanation, I'll keep it brief. Inflammations in the body, whether it be IBD or skin rashes or arthritis, usually mean there is too much fire or pitta in the system. And to alleviate or balance the pitta, one must change their diet and lifestyle to calm that excessive trait. Okay, so diet, easy. We've all experimented with radical dietary changes. But lifestyle? A bit harder. I've learned that eastern medicine looks at the whole of the body which also means looking into emotions, thoughts, behavioral traits, and personality types.

I learned that pitta people have a lot of fire in them. I am one of them. We are impatient, get frustrated easily, angry, perfectionists, yet we are witty, have sharp sarcastic tongues, and our brains are overactive. I've changed my job where I was in constant stress which triggered my frustration and anger. I've learned to recognize people I need to stay away from and certain social situations because those emotions get triggered. I've learned to create a routine that compliments my pitta imbalance, a schedule that starts when I rise and when I go to bed. Learn to shut my over active mind through yoga and meditative practices. Tone down my erratic mood swings by realizing what makes me feel that way. I'm still trying to figure it all out. All in all, just learning to go with the flow and not resist too much of life and relax more.

I know it's hard when people have kids and careers and that's when UC then becomes an inconvenience that just need not exist. So any means necessary to get of it, the faster, the more convenient, the better, then I believe Western meds for maintenance really play a big role. Same with some people who have struggled with the disease for umpteens of years and are just down right tired of bleeding, then yes, meds when they work bring so much relief. Or there are some who couldn't even think about changing themselves or see nothing that needs tweaking when it comes to their being. I'm not down playing it. We are just all different...

And oh, I have talked to many holistic practitioners that have suggested that I look inward to find some answers. So far, a lot of what I've found coincides with their explanations as to how one gets inflammation in the body...

What if this is realistic thinking? I'm not at all missing out on life searching for a cure. I feel like I'm living life and then some because I've had second chances to make myself healthier and take care of myself in the long run. I've been hospitalized. blood transfusion, Remicade, pred, the whole gamete, but I never felt comfortable settling into drugs to "cure" the disease, so I keep searching. This has all propelled me to change directions and go to school to study Chinese Medicine. To be around people who know very well how to treat illnesses like these naturally. I'm certainly not waiting for a cure, I'm very pro-active. And I've not down-played Western meds, I've used it, still use it, but don't want to fall dependent on pills to keep me alive, definitely not at a young age. Way too many complications can arise from them in the future and I do not want to take more pills to suppress those. I've learned so much about this all but I have had to think outside the box. but again we're all different...

One source that has not been mentioned on this thread thusfar is "Listen to Your Gut" by Patel-Thompson. This is a detailed and empirically driven account of a so called natural strategy to address UC/IBD. I have found it to be a valuable resource in my efforts to find something better than what is offered by the medical status quo. This is not to denigrate traditional medicine, but to recognize its limitations with respect to IBD.

I personally love the spinach/sunflower seed diet. I eat my salads almost every day with baby spinach and a small handful of sunflower seeds. I am not on any meds and have absolutely no signs of UC and haven't felt better since before I got my first flare, well in fact, even years before that. I haven't had a flare for almost 2 years.


My GI told me that I don't have to take maintenance meds if there are no signs, but to start up with the first sign. That is what I have been doing and it has worked for me. I am not somebody to put chemicals into my body unnecessarily. My GI also stated that there is no predicting this disease, it can get a whole lot worse or stay mild.

Do I think this is a cure, no. Do I think I will probably flare again, oh yes. Do I think the increase in Magnesium is helping to keep me in remission, yes until a trgger comes along, then I will start my meds again.

For my first two flares, I was on NO meds and got into remission.

fruitgirl said...
princesa has modified her diet and such, but I believe she did it while she was having symptoms and taking medicine.

Sorry, I haven't been on the forum in a while. IMHO, there's no reason you have to take an either/or approach. Meds can be helpful (or necessary) to help with acute flareups, although I do believe less is better and the goal should be to reduce or eliminate the need for meds. Bebushka, I agree that meds cover up or suppress symptoms, but do not get to the root of the problem.

I also agree you can't approach it from "here's what worked for me," because we are all different. I do believe there are some general principles that apply to everyone: eradicate underlying bacterial or viral infections, address overgrowth of bad gut flora, restore good gut flora, use natural supplements to suppress inflammation, indentify and eliminate YOUR problematic foods and foods that are known to increase inflammation. Exercise, reduce stress, get plenty of rest and support the body with vitamin and mineral supplements tailored to your condition.

I think part of the reason alternative treatments have failed some people is because they try one thing at a time and/or they don't give the natural approach enough time to work. In my experience, healing requires a combination of treatments that address different things: gut dysbiosis, inflammation, poor diet and unhealthy lifestyle. You should also keep in mind that natural supplements generally don't provide the immediate relief of symptoms that often comes from medications. It took most of us many years to get sick enough to be diagnosed with UC. It's going to take a long time to heal. For reference, when I was diagnosed, I spent a week in the hospital and a month off work after that. A year later, I was back in the ER. I was so sick I wanted to die, but instead, I spent the housebound time researching and reading everything I could find about UC. I estimate it took probably two years from the time of my diagnosis to feel like I'd turned a corner and was headed toward remission. It's a long time, but in retrospect, it's short compared to the years I still have left to live. I've been in remission so long, I tend to forget what that time was like and how miserable I was. I don't claim to be "cured," but I do feel I've found a healthy way to live that will ensure I stay mostly in remission. Is it tough to do? For most people, probably so. Is it worth it? I can't tell you how good it feels to be normal... to get married, to travel, to succeed in my career... without having to wonder when I'll get sick again or where the nearest bathroom is.

Bebushka, I've been through multiple GIs and none have ever talked to me about probiotics, dietary changes or any other "alternative" treatment. Unless you're lucky enough to live on the east or west coasts, where more progressive GIs can be found, it's up to you to educate yourself. If you're interested, I can recommend several excellent books to get you started.

Thanks! My job (new promotion) has taken over my life for the past few months, but before that, I used to try to jump on the forum every day or two. I've always thought it sad that folks who learn to successfully manage UC often go their merry way and don't stick around to share knowledge and support those that are struggling. I'm thankful for everyone who helped me learn so much about UC and a complementary approach to treatment. I hope I can pay it forward.

bebushka said...
I see that most everybody in the forum talks about pharmaceutical drugs and surgery. Anybody do any heavy duty exploration into alternative medicine to help manage UC? I'm finding a lot of good info and explanations as to why I have the "disease" with ayurveda. Found some awesome info regarding Chinese Medicine as well. I believe I'm finding success following certain treatments. Time will only tell but I feel as if there is so much more out there than what the GIs are talking about.

All of the drug therapy only covers up symptoms and not the cause. That's why I think there's a lot of recurrences in flare-ups even after being on maintenance meds that are supposed to work long term. Getting to the root cause is where, I believe, we can all heal ourselves. But these root causes may entail changing lifestyle and behavioral patterns and habits that we have been accustomed to since birth. Recognizing that and then following a path to change it for the better may also be too hard for a person to do...thoughts?

Yes. I'm in remission. I did fecal transplantation, take probiotics, as well as eat anti-inflammatory foods and avoid pro-inflammatory foods instead of taking 5-ASA's. After all, anti-inflammatory foods don't have the negative side effects of 5-ASA's, yet they do the same thing--reduce inflammation. I add turmeric to my foods and drink ginger teas, especially Chai. Both turmeric and ginger are very anti-inflammatory--more so than such things as omega-3 and garlic.

As for Ayurveda, I just took a yoga teacher training program and should be getting my certification in January 2010. In our program, we learned about Ayurveda. I'm a vata. Colitis is a pitta disorder. I believe my pitta constitution was higher a few years ago; however, I have since learned to go with the flow and no longer get upset when things don't go my way. Since my dominant constitution is vata, it is easier for me to get and stay in remission than those whose dominant constitution is pitta. I don't follow the pita diet though. I feel the symptoms for the Ayurveda types make sense because of how they are defined. Pitta people get angry > If you are an angry person, then your pitta constitution is high. The definitions and explanations are all circular. However, the connection between diet and Ayurveda types is lacking. Pitta's and those who have a pitta disorder are not supposed to eat spinach. Yet many people on this forum swear by the spinach and sunflower seed diet, me included. You have to remember that these diets were put together some thousands of years ago, and they haven't changed much over the years. The person/people who developed them were probably thinking in terms of what foods are calming for pittas. They didn't know much about which foods are anti-inflammatory and which ones are pro-inflammatory.

Other than that, I find meditation, self-hypnosis, pranayama, and yoga asanas to be beneficial for calming the body and mind as well as de-stressing the abdominal area, and therefore helpful for keeping me in remission.

Even though we are all different, there are some commonalities. Therefore, it is worth it to take the time and effort to self-evaluate oneself and pick those alternative methods that make sense for oneself. For example, if your colon has trouble digesting food, then perhaps a low-fiber diet such as the SCD might be good. If you've been on antibiotics a lot, then perhaps your colon is lacking in fecal bacteria. Fecal transplantation and probiotics might help. If you tend to flare when you are under stress, then perhaps meditation, changing careers, taking on less, self-hypnosis, pranayama, and an asana practice might help. If your colon is inflamed, then perhaps going on an anti-inflammatory diet might help. In a sense, these too are all circular. That's why they make sense.