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Ulcerative Colitis
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Posted 10/10/2007 2:29 PM (GMT 0)
First off, I'm new to the forum.  I'm missing work today because my UC is so bad that I started throwing up (i may be in for another hospital visit soon because of it) so i deceided to fiddle around online to see what I could find and found this site. 


What I want to know is if anyone here uses natural remedies for their colitis. 

I'm allergic to all the prescriptions I've tried.  First I was put on Casana suppositories because my UC was mild and in the rectum and sigmod (sp?) colon.  Turns out I'm allergic to mesalmines and sulfasalazines.  I couldn't breath if I so much as tried to stand up while on Casana.  Next i tried hydrocortisone enemas.  Didn't do anything whatsoever and since its a steriod I was told to stop taking it after 3 weeks.  Next went to Asacol.  I was completely intolerant to it.  I was only taking one pill a day and became so constipated that I couldn't go to the bathroom for a week!  Shortly after stopping the asacol I got really sick missed a month of school and spent a week in the hospital.  I was on prednisone, flagyl and one other antibotic while I was in the hospital in IV form.  I continues all 3 in pills after my release and discovered that pill Flagyl is bad for me and ended up back in the hospital for a day.  After being released again, I continued the prednisone in a tapering off dose (started at 40mg a day) and begain 6-MP therapy after my enzyme tests said I was ok to go.  As I tapered off the pred. I started to get sick again.  One day I became violently ill and had to go to the ER.  Turns out I was intolerant to the 6-MP dispite the tests results and it gave me pancreatitis.  So that leaves me here, with no meds after 7 months because I refuse Remcaid because my doctor said it has a high risk of causing lymphoma and with my luck so far, I'd get it.  I was ok for about one month after my release from the hospital with pancreatitis while I was still tapering off the pred.  Pred. is the only thing that works for me, but the long term side affects are not worth taking it too me.  (especially since I took it for 5 years in low doses from time to time for cystic acne)

I feel like I'm out of luck.  I began taking herbs to help a few months ago and they were helping, but after I started school again (my last quarter) I started to get stressed and my UC got out of control again.  I've already missed the max amount of 2 of my classes, but i feel that if I don't start getting better I may need to take a trip to the hospital again.  I'm considering trying a gulten free diet.  I tested negative for celiac but that doesn't mean i'm not still allergic to gulten.  Does anyone have any ideas, suggestions, comments about what I could do?

btw the supplements I'm currently taking are:

Boswellia - 350mg 2-3 times a day

Aloe Vera gel -100mg 2 times a day

Omega 3 - 1000mg 2 times a day

Probiotics - 1000mg 2 times a day

L-Lysine 500 mg 1 a day (for mouth ulcers caused by uncontrolled UC)

Posted 10/10/2007 2:54 PM (GMT 0)
Hi and welcome to Healingwell :) Has surgery ever been brought up to you? It's such a drastic step but many people have had their colons removed to lead perfectly happy and healthy lives. There are specialized diets you can try if you haven't already done so such as SCD. I tried it for a week but couldn't do it since it's to restrictive for me but it's worth a shot?
Posted 10/10/2007 2:56 PM (GMT 0)
There are alot of natural paths to take. You should try the google search at the top of the page. If you are looking at diets, try searching for SCD. Many have had success there...it is tough but you sound like you are willing to try anything. It seems you are on many of the supplements that others reccommend.

The more unusual therapies...acupuncture, chinese herbs, antibiotic therapies....there are so many. I am sure that others have many more ideas for you still to come...
Posted 10/10/2007 3:29 PM (GMT 0)

You may want to try VSL3, as it has helped people in this forum.  Also, Aloe Vera Gel (not juice - that is a laxative) Lily of the Desert brand has also helped people that werer allergic to the Asacol drugs.  I am so sorry you are going through this - I can't imagine all the stress you are going through.

love to all here

bob

Posted 10/10/2007 6:40 PM (GMT 0)
Sounds like you're already trying some of the best natural therapies, although different brands can certainly give you much different results. Make sure the probiotic you're taking is strong enough. In my experience, many OTC brands were totally ineffective and scientific tests have revealed they often don't have the viable count they claim to have. In addition to the VSL3 mentioned above, you may also want to look into Natren and Custom Probiotics brands.

Omega-3 supplementation is great for helping control inflammation. Again, make sure you're getting a large enough dose per day. Pure l-glutamine powder has been shown to be helpful for healing the colon and controlling diarrhea. Regarding aloe, some juices have the laxative component removed. George's Roadrunner Aloe Vera juice is the safest brand I've found. Mucosaheal is a blend of naturals developed specifically for IBD and may be worth a try.

Dietary manipulations can play a large part in your ability to reduce symptoms and begin to heal. Check out the Specific Carbohydrate Diet at http://www.scdiet.org. Other dietary approaches for treating IBD can be found in a multitude of digestive health books... Optimal Digestion, The New Eating Right for a Bad Gut, etc.

Before you consider surgery, I'd strongly suggest you check out Jini Patel Thompson's book Listen to Your Gut. As a Crohn's sufferer, she covers a wide variety of non-pharmaceutical, non-surgical methods for managing and healing IBD. Don't know where you live, but you may also want to consider seeing a gastro with experience treating folks from a non-pharmaceutical standpoint. There aren't many of them out there, unfortunately, but I'm considering traveling to see Dr. Ronald Hoffman in NYC. Check out his clinic's Web site. There's some great info their management of IBD patients there:

http://www.drhoffman.com/
Posted 10/10/2007 7:41 PM (GMT 0)
Hi Betsaronie,

I am sorry to hear that you are not doing well. Have you considered trying budesonide enemas? You can ask your doctor about them. I use them every night, and get them from a compounding pharmacy. Budesonide is also a steriod, however the liver metabolizes it a couple hours after taking it. They help me enough that the rectum and sigmoid is free of inflammation and this way I can at function throughout the day. They do take a little for time to work--around three weeks at least.

I have tried many different natural remedies, especially herbs. There is a Chinese formula called Jing Pi Ling, which I tried around six months ago. It did actually help my stools quite a bit--they were coming out normal. However, as with many herbs they were warm in nature and made my face break out with acne. Of course, I did not like that. If any medicine or herbs mess with skin or hair I won't use it. But everyone is different. A accupuncturist/naturapathic doctor at UCI had prescribed this formula for me. She told me she had a couple other IBD patients who did well on it.
But of course herbs are also potent and also can have side effects.

University of California Irvine has a complementary alternative medicine program, therefore, I considered her credible.
If you live in a big city or near one you may be able to find a reputatable accupunturist or naturapathic doctor who may be able to help you out. Eating well also makes a big difference, at least with your symptoms. You should try to keep a diary of the foods you consume for a couple weeks and also write down your symptoms. This way you may be able to better identify the foods that aggravate your bowel. So far everyone has a lot of good ideas.

I hope you feel better soon.

Regards,

red plum
Posted 10/10/2007 9:07 PM (GMT 0)
Try the gluten free diet. Consider trying to go gluten free and dairy free for a trial period. It can't hurt you, even if it doesn't help. You could very possibly be gluten intolerant without being Celiac.
Posted 10/11/2007 3:10 PM (GMT 0)
I second the suggestion of acupuncture. The catch is trying to find someone good. I was so sick that I was ready to be hospitalized when I found a great acupuncturist. In two weeks (treatments 2 times a week) I was feeling almost perfect and taking NO medication. I continued this remission for about 10 months and saw the acupunturist once a week during that time. So you have to keep up with it.

Of course, my health insurance didn't want to pay for it even though it cost way less than hospitalization would have cost!

Second, I'd say that altering your diet might work but that it's a slow process to figure it out. What works for some people might not work for you. But as other have pointed out, you don't have much to lose by trying.

Third, I've had a good experience with hypnotherapy. The studies have only been with IBS so far, I think, but I still think it's good for other GI problems. The hypnotherapy is just very, very deep relaxation... not "I'll snap my fingers and you'll feel better" kind of a thing. Here's a website by one of the researchers at Univ. of North Carolina where there's a lot of good studies being done.
http://www.ibshypnosis.com/

I hope some of this is helpful. It takes a lot of time to figure out which alternative therapies might work but at least you won't be allergic.
Posted 10/11/2007 3:41 PM (GMT 0)
It seems like you are trying a lot of natural products.

I know this is very controversial, but when I was desperate for relief, I tried the vitamin E enemas and they did seem to help, at least reducing the mucous and pain. It is not something you would want to be your only treatment. Probiotics and Aloe Very are very helpful when flaring.

When flaring I needed to watch my diet. My problem was with most fruit and raw & gassy vegetables. Activia yogurt helped, too.
Posted 10/11/2007 5:05 PM (GMT 0)
When I first started with this illness, I had this huge fear of surgery. No more. My biggest fear is having an out-of-control flare and not having any kind of life that didn't involve living in a bathroom.

I have visited the j-pouch forum here and have found that for the bulk of folks who have had intractable disease and who have lost their life to this illness, they got their life back after they had the war happening in their body (their colon/immune system) removed.

I realize this sounds awful and extreme, and you may think I'm crazy, but I've learned that surgery is NOT the worst thing that can happen to someone. Living (if you can call it that) with a chronic condition that doesn't allow you to L-I-V-E is the worst thing that can happen.

Good luck to you.

Mitz
Posted 10/11/2007 6:03 PM (GMT 0)
If one cannot take certain meds because of intolerance or allergy...one should remember that natural preparations can also have the same "med" in them . Salicylates are in many foods/products/natural preparations...so do the homework/research and ask in depth questions regarding what you're taking.

Some may be allergic or sensitive or intolerant to the preservatives in the preparations and not to the medication themselves...so, maybe a natural product would be a better way to go..for example. sulphites/sulfites/sulphates..etc.

q
Posted 10/11/2007 6:24 PM (GMT 0)
I too am allergic or non-responsive to tradtional oral RX so I went the natural route and take the following with NO problems, side effects or such...

bee propolis (avoid if you're allergic to bees)
omegas 3-6-9
probiotic (primadophilus reuteri, made by natures way)
Prodiem fibre therapy (similar to metamucil)
vitamins, A, C-calcium ascorbate, b12


:)
Posted 10/12/2007 12:28 AM (GMT 0)
Sorry you are not well. Welcome to Healingwell. Lots of support here. For me, an antifungal program was just the thing to help me get well again. Eliminated all grains, sugar, yeast and took natural antifungals, as well. Similar to the SCD, but not as strict. I would definitely consider the gluten free diet, like you're thinking.  What have you got to lose right now? :) I would also eliminate the sugar and yeast from your diet too, for now. Hard to do, but it sounds like you're sick and tired of being sick and tired, like I was. Take care. Let us know what you decide.

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