Ulcerative Colitis

Saturday, June 21, 2008
My husband suffers from a chronic disease called ulcerative colitis, which, in Western medicine, is kept in remission with drugs (there is so far not a cure). No one really knows what causes it, but the theory is that there is a genetic predisposition coupled with environmental factors that tend to trigger the disease. The peak incidence for the disease is between the ages of 15 and 25 (Landon was diagnosed when he was 26).

Landon has to watch his diet, and through the process of trial and error, has determined what foods tend to trigger flare-ups. We've been told time and time again that diet and stress do not cause the flare-ups, but these things worsen the symptoms. Usually, however, it is stress or indulging in something that has been known to affect his gut in the past that will push him over the edge and into a flare-up.

When he was first diagnosed, in early 2006, he was experiencing what up to this point has been his worst flare-up ever. They say as long as you stay on the medication, you will never experience a flare-up like your first. The frustrating thing about the medication, though, is that they will only manage the disease--they are not a cure. My friend Annagrace, whose brother has Crohn's, has blogged about her own frustrations with management drugs, as there is little to no incentive for pharmaceutical companies to invest in research to find drugs that will cure a disease like ulcerative colitis, because, though I hate to say it, there's no money to be made in finding a cure. Landon's medication costs nearly 20K a year (thank-goodness we have health insurance), and there are many other management drugs out there for ulcerative colitis that are much more expensive, so pharmaceuticals net a lot of money on drugs that keep diseases like this in remission.

But even with the drugs, flare-ups sometimes happen anyway. Landon has been experiencing a flare-up for over a month now, and his doctor is booked out until November, so he had to make an appointment with a Nurse Practitioner in the office. Whatever happened to leaving empty slots for emergency appointments? Anyway, when he was finally able to be seen last week, the first thing the NP suggested was that he go back on Prednisone. Landon said he didn't want to do that at this time, and she immediately became irritated with him. Guess she likes it when patients just go with the flow; funny, I thought treatment was ultimately the patient's decision, not the doctor's. Prednisone can be helpful for diseases like ulcerative colitis, but it also comes with a host of side-effects, including insomnia, shaking, depression, swelling of the face and trunk, vision problems, and osteoporosis, to name a few. In our opinion, this is a last-resort type of drug. There was no discussion of alternative treatments or other suggestions, so Landon left the appointment feeling annoyed that he even bothered to make the effort to be seen.

Meanwhile, I phoned my friend Colleen to get information on a Naturopathic Doctor that specializes in GI issues that she has highly recommended to me in the past, then I went online looking for natural remedies for colitis. Here are a few that I found online:
  • Omega 3 fish oil--has anti-inflammatory properties
  • Aloe vera juice--restorative for the digestive tract, reduces inflammation
  • Boswellia--acids have an anti-inflammatory action
  • Liquorice--herbal treatment used in China to treat colitis, aids in the reversal of auto-immune diseases
We're not celebrating yet, but Landon has shown drastic improvement since starting on the Omega 3 and Boswellia Friday. After eating rice cakes and tuna for nearly a month, we are feeling hopeful & positive. I have to admit, I'm a little frustrated that the doctors he has seen have been so hasty to dole out the Prednisone when he has a flare-up, and have never suggested valuable alternative remedies. This just goes to show once again how important it is to be an advocate for your own health. I hope Landon continues to respond and that one day there will be a cure. Meanwhile, I'm pleased to find there are so many natural and herbal options out there for people who suffer from inflammatory bowel diseases. It's unfortunate that many doctors don't start with natural remedies first, then move to stronger medications if needed. I know when Landon had his first flare-up, he was so sick we were desperate for him to feel better quickly, so we agreed to some very strong medications to get his colitis into remission. Looking back, I wonder if that was necessary. It's possible that Landon might eventually be able to go off his medications altogether in lieu of natural treatments. Time will tell. Until then, I have hope.


Kerrie said...

Karli, I hope this new natural remedy will bring Landon lasting relief. I am happy you were able to search out some answers on your own - even if you shouldn't have to do it yourself. We live in a time when you must be your biggest health advocate.

By the way, I am writing from NC right now. Check out the Blog to see what we're up to these days.

Love ya, Kerrie

Annagrace said...

This all sounds so so familiar. My brother has finally found an amazing doctor (a Dr. Milner, Hawthorne area) who manages to work both the Western and Eastern approaches to these sorts of internal issues and diseases, otherwise even up at OHSU all they seemed able to do was put him on more drugs that would help alleviate symptoms but came with their own crazy side-effects. Isn't it crazy that so much of Western medicine is about treating the symptom not the actual issue--masking pain and making us seemingly able to function day to day but not actually getting to the root issue. Kind of like the beauty industry--more interested in looking good than actually being healthy.

I'm so glad Landon is feeling like things are getting better! Aloe vera juice is amazing stuff--and I know there's some really interesting studies and work done with colitis and Crohn's and juicing/raw food diets.

Anonymous said...

Karli--although not the same but deals with similar "area", I suffered from Irritable Bowel Syndrome for 12 years until it went away like magic in 48 HOURS! The cure? I stopped taking the birth control pill...that was the only change I made and haven't had an episode since (about 5 years now!) Not that that helps Landon...unless there's a male pill out there, wait I think there is, ha. But seriously, I know how those episodes can feel--emotionally in addition to physically, so I sure hope he can find an answer!

Aviva said...

Just keep in mind that these alternative treatments are drugs too. And they can have their own host of side effects, or combine with prescribed or OTC medication in harmful ways.

It's really important to make sure your doctor knows which herbal or alternative medicines you're taking so s/he can warn you about harmful interactions.

I'm not a fish eater so I always have trouble remembering, but I thought tuna was something you were supposed to limit how much you ate of it because of mercury content. But maybe I'm totally confused -- I don't worry about it since I don't eat any fish at all.

Also keep in mind that there's little to no regulation of supplements, and tests by groups like Consumer Reports have found them to often not contain the levels promised on the label. Too little or too much can be a bad thing. CR has some brands that it recommends, which you might want to check out.

If you're interested, I have an acupuncurist I really like in Tigard, just off 99.

But most important is that Landon is feeling better these days. I hope this remission lasts a LONG time. I met a woman at a class I took on living with chronic illness who had been in remission from ulcerative colitis for 20 years before she had another flare up. I hope Landon gets a remission that lasts at least that long. :)

Anonymous said...

My husband and I bought a Chinese medicine book at Powell's that contains natural treatments for just about anything you can think of. It has been really helpful. It's unfortunate how it's in the best interest of the drug companies that we stay sick and keep buying their expensive medicine that offers no cure.


Anonymous said...


Fenugreek will do wonders on ulcers and digestive disorders. It is used as part of spice in Indian cooking. It's staple spice used in in Indian cooking on daily basis. Yu can get fenugreek in any indian stores and it cost just $2- $3 dollars for 200 gms.

Soak a tablespoon of fenugreek every day at night . Swallow the soaked fenugreek first thing in the morning with water. It cleanses the system and it has many many additional benefits like treating bad mouth odours, increasing digestion. An additional benefit is it increases the virility in men ; ) . Eating fenugreek everyday has no sideeffects and it has proven medicinal effects since Indian socieity has been eating this for thousands of years.

You will see the benefits of eating fenugreek slowly not immediately like western medicine.

A simple home remedy to cure dysentry in india is to have table spoon of fenugreek with pinch of asafoetida in a glass of buttermilk.

My dr suggested I might have IBS since there is no sure way to detect IBS, I started the fenugreek regiment and I eat fat free yogurt rice everyday (Yougurt Rice preparation : Mix fat free plain yogurt with white or brown rice with pinch of salt to taste)

Anonymous said...

You can find info on fenugreek from this ayurveda site.

Hindi name for fenugreek is "methi" and check out methi in indian grocery stores.


Claudia said...

WOW~~~WOW Karli!!! You got a whole garden full of advice and alternatives!! You know how I have suffered from IBS and Spastic Colon and I just got over a bad flare-up that lasted about 6 weeks. One of the worse I have had. So to a small sence, I can understand how Landon feels.
I can't believe how much you wrote about it. How do you ever find the time???? or how can you consentrate with the kids?? I know you can type faster than I can but youn typed a lot with all you do.
I wonder if Landon would do better seeing a naturepathic Dr. Just a thought.
I am glad Landon is feeling better!! I felt bad he could not even have strawberry shortcake on Father's Day.

Jeremy said...

I'm sorry Landon hasn't been feeling well! I love that you found sound natural remedies for him though and that he is responding really well to them. Good for you Karli for doing your own research!

I know you are heading off soon. Hope you have a great time!

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