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Crohn's Disease Forum » Your Story » Any1 with severe crohns go natural??


06-24-2013, 08:03 AM   #1
really_worried
 
Join Date: Jun 2013
Location: melbourne, Victoria, Australia
Any1 with severe crohns go natural??

hi people..

I have read posts about people who have managed to get off the drugs and try the alternative route.. I commend everyone who has but what Im wanting to know is there anyone who is treating themselves holistically and who had or still has an aggressive form of the dis-ease and also suffered from perianal and/or rectovaginal fistulas??

I have been on and off meds, have had bowel resection and since been compliant with doctors and back on drugs I am now been forced to deal with a rectovaginal fistula... doctors play god and promise that their way is the only way you will get better but here I am in the worst position I have ever been in!! im 24 and getting married and having kids was high on the priority list but for the past few weeks im isolating myself from the world and I want an answer, another way other than drugs which create more side effects!!!

I think the only thing holding me back is fear... but im getting to the point where I don't care anymore my health cant get much worse than this so I guess im just looking for a push in the right direction and some words of advice/support
thanks
06-24-2013, 12:15 PM   #2
nogutsnoglory
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In my opinion from the accounts I have read of most people succeeding at the natural route alone are either in remission or they have a mild case of disease. I'm sure this isn't the case for everyone but I have a severe case of Crohn's that necessitated surgeries and medications. I tried many natural approaches with varying degrees of success but ultimately I need the maintenance therapy.
06-25-2013, 12:04 PM   #3
TaylorLauren
 
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Join Date: Jun 2013
Location: Maine
I'm so sorry to hear about your struggles. I wouldn't consider my Crohn's to be too severe, although it is very debilitating at times. I'm twenty-two and started having serious symptoms about five years ago. I've tried a ton of pills and have had surgery recommended to remove a portion of my small intestine, but as of now I'm not taking anything. I've just begun seeing a naturopathic doctor, and she is recommending I make some serious changes to my diet to see how much that is affecting my inflammation and healing process. She also has recommended I take certain supplements that will help me heal and reduce the inflammation in my bowels. What I've come to realize over the past few years is that although part of my disease is out of my control and may require medication, a significant amount of it can be helped or hindered by my diet and my emotions. My symptoms are always much worse when I am going through some emotional upset or when I am eating foods that I know bother my stomach. By cutting out those foods and overcoming my negative emotions I've made my disease much more manageable. And lately I've been realizing that there are probably many other foods that I consume that are still hindering my intestines from healing.

Things like rectovaginal fistulas can't be fixed my simply cutting out dairy and doing meditation, so I do believe that you should still be seeking some medical care to take care of those parts of your illness that you can't fix on your own. But if you don't already do this, I would recommend that you pay close attention to your moods affect your belly, as well as what foods make you feel worse. If there's one in your area, I would advise you to seek out a naturopathic doctor, who could be complementary to your gastroenterologist or primary care physician. A naturopathic doctor could help you find some supplements and dietary changes that will help your healing process progress and speed up. Unfortunately insurance doesn't cover the costs of supplements and a naturopathic doctor, but if you're like me you're probably willing to pay as much as you are able to feel well again. And if you find a good naturopath, they will be willing to adjust the costs of your appointments to fit your needs.

It took me a while to really accept that no matter how good a food sounds, I just simply can't eat it if I want to get better. I've had to learn to see some foods I used to love as poison. This change has already made me feel better. Even though some aspects of Crohn's need serious medical treatment, I believe you can prevent these symptoms from arising by changing your diet, adopting practices like meditation to control your emotions, and taking supplements that promote GI well-being and are anti-inflammatory. I hope this helps! I believe you can get yourself well again. Don't lose hope!
06-25-2013, 02:54 PM   #4
jimmyboy
 
Join Date: Jun 2013
Location: princeton, New Jersey
It sounds like a nice idea to "go natural" but I think if it works it is pure coincidence. At various points in my disease I have tried to get off my meds (Azaiothiprine) and in each instance it has led to more symptoms eventually. I'd say, if you could keep off steroids and still have a good quality of life, your doing pretty good.
06-25-2013, 03:12 PM   #5
alex_chris
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First, I am very sorry you have all these troubles with fistulas, those really are one of the worst things of Crohn's.

I was originally diagnosed with Crohn's because an abscess and a perianal fistula developed back in 1999. It was drained and eventually healed after many months and while it's still there, it doesn't bother me.

As to meds, originally I was on 5-Asa only until 2003 when I had to have surgery because of two stricture in the small intestine... basically because
I had ignored Crohn's for nearly 4 years and didn't take any long term meds. Then I was on azathioprine for the next 5 years and was in somewhat good remission for long parts of these 5 years. Had quite some problems with iron deficiency from 2007 onwards, so in 2008 during a time of remission my doc said to try phase out aza. Phasing out aza didn't help with the iron problems, but I didn't see that much different in how I was doing (not completely in long term remission, but generally ok) so I didn't start aza again.

In 2010 I had a major flare up, got pred again and started aza again and get to somewhat good remission again. But even with aza things weren't really good, got into real big troubles again in late 2011 and early 2012. Collapsed due to anaemia. At that point I started to finally tell myself that taking drugs is one thing (and can help with remission), but other elements of Crohn's management have to contribute too (sport, stress relief, vitamin and other supplements etc.). I have been in real long-term remission for the last 16 months (last time I was that healthy was before 1999).

I am aiming to phase out aza next year again and see whether I can manage my Crohn's without it.

Having said all that, I am not sure whether you want to label my Crohn's severe (it definitely isn't mild), although I had surgery before, most of my smaller and quite some of my larger intestine is affected, I had really severe symptoms in the past and also had a perianal fistula. But in any event, personally the only way I will get off meds is if I am sure that I can continue to be in long term remission and have been in remission for a long time.
__________________
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Crohn's diagnosed in 1999
On Aza from 2003 to 2008 and from 2010 again until Today
60cm of smaller intestine removed in 2003
Vitamin therapy with D3, B6, B12, magnesium, zinc, folic acid for years
Iron therapy with Tardyferron 80mgx2 and Loesferron 80mg for years
Yoga, running, freeletics on the sport side!
06-26-2013, 08:44 AM   #6
TaylorLauren
 
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Location: Maine
It sounds like a nice idea to "go natural" but I think if it works it is pure coincidence. At various points in my disease I have tried to get off my meds (Azaiothiprine) and in each instance it has led to more symptoms eventually. I'd say, if you could keep off steroids and still have a good quality of life, your doing pretty good.
I think combining prescription medication with significant diet changes and supplements is an excellent idea, especially when you've learned that you really need medication to control your unique case of Crohn's. I would argue, though, that it is undeniable that natural changes to your lifestyle and diet can increase your health and well-being, regardless of your disease, whether it's cancer or Crohn's, thus limiting your dependence on medical interventions.
06-26-2013, 10:02 AM   #7
rollinstone
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hey bud, just wanted to reiterate whats been said above and wish you some well wishes! you'll get better soon, I think the most full proof plan is meds and diet, and lifestyle changes. PS im from also 24, and from Brisbane
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