Self-Experimentation: This Time it’s Serious

Severe Ulcerative Colitis, the condition I have just been diagnosed as having, has no known cause and no known cure. Apparently, stress causes it to flare up, and once that’s happened, you’re stuck with it for the rest of your life. All the doctors know is that for some unknown reason the body’s immune system suddenly goes hyperactive. They think this happens after it’s successfully combated some harmful bacterial infection in the intestine, and the white cells begin relentlessly attacking the good bacteria in the intestine as well, damaging and inflaming (and sometimes rupturing) the intestinal wall in the process.

The medical profession’s utter cluelessness about this disease does not surprise me, because they are equally clueless about most of the diseases that, today, seriously incapacitate and kill most people. The job of the doctor today is to push the medicines hawked by Big Pharma, and if those pills don’t work, to perform surgery, taking out the disease and frequently the essential organs it is preying on at the same time, or to prescribe massive doses of toxic chemicals or radiation that indifferently kill everything they get near, good and bad. I don’t blame doctors for acting this way. This is the best they can do with the medieval tools and knowledge at their disposal. They do what they must.

For most diagnoses and treatments, this is the best that medicine can offer, that science can offer, that simplistic solutions in business, politics and every other complex domain can ever really hope to accomplish in the face of complex problems. Like the Israelis in Lebanon and the Americans in Iraq and soon Iran, the strategy is do something spectacular, so the (im)patient/customer/voter thinks that something dramatic and active is being done. No matter that it is nearly as likely to make the situation worse as better. Just try something, anything.

It is causing considerable consternation already among the specialists in my case that I’m not prepared to authorize Shock and Awe missions in my body. I indicated that I am prepared to treat the condition with non-steroidal anti-inflammatory drugs, and pro/microbiotics, in combination with other natural treatments. That’s all. NSAIDs don’t cure the condition, of course, they just relieve the swelling and discomfort. Pro/microbiotics attempt to restore the inappropriately-destroyed bacteria in the intestine, but it’s problematic — the digestive system is so hostile to most bacteria at different points that getting the ‘good’ bacteria to the right place is a little like trying to replace a dictator with an altruist in a country at war, without the combatants noticing. The purpose of both is to make the patient feel better, relieve some of the stress of pain and discomfort, and give the body time to try to figure out how to heal itself.

Doctors generally know this is a hit-and-miss proposition, so they’d rather go in, guns a’blazing, and kill, overwhelm, or remove something instead. This approach, thanks to learnings from previous victims (er.. I mean patients), actually statistically improves your chances of living longer and better, at the risk of masses of unpredictable side effects that, for some, are worse than the disease. But the point remains: there is no cure, and there is no known cause. Without either, it’s a mission of desperation. I’d rather give peace a chance, even if that chance is not great.

The specialists are trained to try to psych you out when you point out these facts and risks to them. Here’s a fascinating article that shows how most doctors are humiliated and infuriated when they are unable to convince patients to be ‘rational’ about the pros and cons of organ removal, steroid treatments that shut down your body’s natural functions, and bombardment with massive doses of toxins. At least the article concludes that ultimately the patient’s decision must be respected, and that (I love this quote): “In deciding that CW’s choice should be respected, her psychiatrist reasoned that the patient’s decision is consistent with her long-term values in which self-determination is central and that it is reasonably in accord with her well-being, although her decision might not maximize her length of life. Depression is influencing her decision without making her incompetent to decide”.

There is some sanity in the world after all.

I’m sitting here staring at my prescribed bottle of prednisone, a powerful steroid anti-inflammatory, whose function is essentially to cripple the body’s immune system. Something stronger and more dangerous than NSAIDs is needed for my ‘severe’ case, the experts insist. This is all they have. The 64 side effects are dreadful and sometimes disastrous. I am strongly leaning towards getting a second opinion, from a doctor whose attitude is a bit less partial to ‘fighting fire with fire’, even though the symptoms are now into their fourth week and have left me unable to concentrate and exhausted.

I don’t want to be an alarmist with this report. My condition is serious and chronic, but not immediately life-threatening. I just think I owe it to you, my dear readers, to be honest about my situation and the fact that my reaction is not stereotypical. It is also not up for discussion or negotiation, so please save your advice, at least on this matter.

Just like Seth Roberts’ attempts to find the cause and cure of his personal diseases, through slow painstaking, rigorous self-experimentation, I will be using this 5-step plan (decide on objective, select base-line data, research and imagine hypotheses, test those hypotheses through immediate feedback, improvisationally, and keep practicing what seems to work). Doesn’t this make a lot more sense to you than the learned helplessness of one-size fits-all conventional-wisdom ‘best practices’ and ‘solutions’, many with no hypothesis to support them at all (justthe result of terribly limited trial and error)?

We will try some things, and see what happens.

No pictures to illustrate this article. You don’t want to see pictures of this. Really. Thanks to the dozens of readers who have sent me self-experimentation ideas, cases, websites and other alternatives for GI diseases. What I’d moist value right now is some hypotheses (no proof needed, just possibilities) about why white cells might suddenly turn on and kill healthy, essential bacteria.

This entry was posted in Our Culture / Ourselves. Bookmark the permalink.

31 Responses to Self-Experimentation: This Time it’s Serious

  1. Allison Daniel says:

    Dave, I’m sorry to here about our condition. Since you enjoy doing research check out this website website describes the many benefits of taking the dietary supplement called Mangosteen RX. I have been taking this for 6 months now and I love it. I Feel healthy, have more energy and have a sense of well being. I believel this is the best antioxident out there. so, you might want to give it a try!Allison

  2. John Powers says:

    Dave, thank you very much for sharing this with us. It’s so very interesting how regardless the subject of blogs, the real people behind them emerge. It’s very lovely in fact. Few people are as open and honest about their own introspection as you are. Of course I want to honor and respect your private space. But as you are in so many things two-steps ahead of most of us, your sharing has real benefit.I’m sorry you have a chronic disease. I wish you well and good learning. Most of all I hope you’ll continue to take joy. Your intelligent, kind and playful inquiry always is appreciated.

  3. Rob Paterson says:

    Dear DaveI share your view completely. Robin has been recoveriong principally not from Cancer but from the treatment. Much of what has been recommended is further Shock and Awe that in turn drives yet more side effects.She has largely withdrawn from conventional medicine as a result. We enter a world of mystery where diet and lifestyle are the drivers but litle is known. I find it unreal that medicine has become merely a marketing outlet for big pharma.All the best Rob

  4. Fiona says:

    Take care Dave, and do what you think is necessary.As for prednisone, it is a horrible drug. As someone who never used to take any kind of medication (even aspirin) to be diagnosed in 2004 with asthma and bronchitis, then prescribed a battery of drugs including prednisone, antihistamines, antibiotics, Ventolin, Seretide and all the rest was awful. Side effects from pred are as bad as advertised. It’s a shame the stuff actually works for me or I wouldn’t take it either.

  5. Dean F. says:

    Dave … my condolences to you. I, too, suffer from ulcerative colitis. I have had it for over 5 years and over time have been able to cut back on the meds. On thing I discovered by accident that seems to help is sea weed capsules. I have been told it is their regenerative properties that do the trick. I have also found that routine visit to the yoga studio helps a lot too. Best of luck to you.

  6. Alvin says:

    Dave, sorry to hear about what you’re going through right now. Take care and stay strong.

  7. CW says:

    Sorry to hear this!

  8. maidhc says:

    My mother takes prednisone, and although you have to watch out for the side effects, in her case it is better than the alternative–she is able to walk on her own, for example.She did talk to a few doctors and patients’ on-line groups before deciding to take it though. Probably the more patients who take responsibility for their own treatment, the better. Doctors have a lot of technical information, but they don’t know you as well as you know yourself.A side benefit to having to monitor her symptoms closely because of the prednisone was that her cancer was detected very early when the chances for successful treatment are very good. So sometimes the best path to take is not immediately obvious.

  9. Octavio Lima says:

    Dave, sorry to hear about your severe condition. I wonder how you are still able to write such wonderful texts taking into account what you’re going through right now. Take care and be strong. Best!

  10. Steve Hinton says: of my clients is a water and health fanatic. The book above describes a doctor who treats stomach disorders with water. the book is a great read of his life (imprisoned in Iran, worked as prison doctor) as well as developing some of the explanations you might be looking for of how mineral and water concentrations affect body systems in general.Your body’s many cries for water F.Batmanghelidj, MD

  11. Sam says:

    Never forget:we all have to die in the end.We can go in peace, accepting the ‘how’ and ‘when’, or we can go screaming and fighting.Never forget you have the choice.

  12. Dear Dave, I have been folowing your site for a few years now, and with the various problems you have had with your back (me too!) and so on, but also observing your mind-set, and your transformation from a corporate being to a self employed. What I have wanted to say, and now am prompted to, is, don’t you think it is time to ease off a bit?That is an amazing workload you wade through every day. Are you sure you are not putting yourself under too much stress, when you also take all the private stuff into consideration? I take up on the point above about trips to the yoga studio. I really recommend that you start with some realaxing, meditative and gentle exercise form for mind and body like qigong, taijiquan or yoga. This way you get to work out and let off steam, which is good, but also learn techniques of increasing your softness, and building up the calm components of your nature, so you are not fighting against yourself, so to speak. So as your mind becomes calmer, so your internal organs work together better with each other. That is a psychosomatic healing process that occurs really in the mind, but is initiated through the channel of the body. Sure it takes a while to kick in, but you will spend this time on the earth anyway, so why not with the benefits of such practice. “It is not only a matter of adding years to your life, but life to your years.” as Kenneth Cohen says in his book: The Way of Qigong: The Art and Science of Chinese Energy Healing. By Kenneth S. Cohen.No harm in trying. Dave,I wish you success in overcoming this impediment.

  13. Nadine says:

    Dave, Sorry to hear about your health problems. There has been some signifcant work done around how the use of antibitoics, antibiotic presence in meat and water supplies has had this affect on white blood cells in . You might want to look into this.

  14. I would suggest fasting for starters. Also my sister has similar problems and she got off Wheat which helps.

  15. knomad says:

    You talk about the physical remedies you want to use to manage the Severe Ulcerative Colitis. You have not discussed what you are doing to alleviate the stress. Can you get biofeedback? Have you researched relaxation techniques. Do you know the benefits of deep breathing? I learned early in life that when was anxious and stressed my gut let me know it was unhappy. I figured out that I needed to find a way to use my mind to manage stress as I was sure life would be dealing me stressful situations. I did not like the pain and agony of colitis.

  16. tim says:

    Dave,Good luck with your treatment plan. I too got stuck with a bunch of doctors and pills at one point. I was healthier after I stopped taking all the stuff they were giving me. I’m lucky that in my personal life I know a few pharmacists , both of whom told me that it was the prescription drug side effects that were actually making me sick .

  17. Dave Pollard says:

    Thanks everyone, for the comments and also the e-mails. I hope e-mailers will not be offended that I won’t be replying individually — this message is for everyone.I’ve decided, after hours of research and discussion, that I will try the Prednisone, on a one-shot basis, and only if I remain free of significant side-effects (I’ve studied and will be alert for them all). I will stop if it fails to work or brings on unpleasant complications. I am aware that the high dose and declining 16-week treatment period will compromise my immune system and could substantially disable the production of natural corticosteroids by my adrenal cortex. I’m sure many of you will be disappointed in my decision, but I have been persuaded that the hyperactivity of this system is producing much of the inflammation and bleeding.At the same time, I will be self-experimenting with a whole series of less violent therapies, starting with a resumption of my iron and B12/B6/folic acid supplements, and also enriching my diet with omega-3 fatty acids. I will be pursuing many of your other suggestions over the duration of the disease.I will be trying to reduce my stress level as well, of course, but this is easier said than done. I have never handled stress well, and have failed to make meditation and other stress-reduction techniques work for me. The stress was exacerbated, unfortunately, by a bungled accounting of my income tax liability by my former employer, which wiped out the savings I had specifically earmarked to cover living costs while I wrote the first two books in my planned series. I am not in difficult financial straits but this completely-avoidable and/or correctable (by them) error sent my stress level sky high. I haven’t decided what action to pursue in this regard, and probably won’t until this outbreak is under control.That’s all for now. Any significant updates or changes, you’ll hear about them. Thanks for all your kind wishes — I’m overwhelmed.

  18. muse says:

    My dad has the same condition (along with neutropenia and occasional flares of acute rhumatoid arthritis – no link between them, though, I think). He’s had it for over 20 years (maybe longer). It is controled with diet and some pills (he’s a mailman so he walks a lot and stays in shape, too). He leads a normal life, though (you’re not condemned to a life of weird medical stuff). Ulcerative colitis is a relative of Crohn’s disease, so info on one might lead to info on the other. For instance, here is a good Canadian source: recommendations: lots of international sites:’m really sorry to read about your illness, please consider joining a forum of people with ulcerative colitis, it really helps to be able to talk with people who understand (I did last month when I was diagnosed with a molar pregnancy – it’s great to be able to ask questions and vent with others who really “get” what you’re talking about).

  19. Raging Bee says:

    Well, if the doctors can’t point out a cause OR a cure, they’d better not complain if you look elsewhere. In fact, they should be trying to support your quest, and maybe learning from what you find.In any case, this sounds like ominous news, and I hope you do find something helpful. Best of luck.PS: I’d cut the doctors some slack here. They could get sued for a zillion bucks if anything goes the least bit wrong; and the only way they can even begin to cover their sixes is by doing EVERYTHING their established conventional wisdom recommends, just so they’ll be able to say “We did what we could.”

  20. Hi Dave,Sorry to hear about your health condition. Have you heard about the ancient Kerala(India) Ayurvedic body cleansing treatments? They have been found to be amazingly helpful.These happen due to an imbalance in the body and they know how to correct it, it might be a very simple process, but would require you to spend about a month or so here in India. It might actually be a welcome change for you. Hopefully you will learn abt our culture and also find a cure for this temporary setback soon.Bye,Srinath

  21. Carroll says:

    Good for you for seeking to “own” your own treatment, Dave. I feel sure that most reputable physicians would actually *prefer* to have a well-informed and critically-thinking patient with whom to team during the treatment process. Best of luck to you with your chosen regimens!

  22. Jon Husband says:

    Adding my thought-rays to stimulate (hopefully) your increased well-being, as always.

  23. Thomas Watson says:

    My (secular) prayers go out to you dave.

  24. Pearl says:

    Thanks for the update.

  25. Medicine is better today in some regards, but also more confusing. My grandmother used to say, “They’re just practicing.” It still applies, to a great degree.I’m sorry about your illness, and I do hope you find an effective treatment you can live with. Yeah, I think I’d definitely get a second, maybe a third opinion.

  26. Steven 3 says:

    i have no idea but why not try this and see if it has any effect. Also get knowledge about what you eat.

  27. Herbinator says:

    Your readers seem to think there are a great many Alternatives out there. Why is it the medicos don’t?

  28. Avi Solomon says:

    Dave,Sorry to hear about your health problems.You might start with taking live yogurt. I know that you might be under information overload right now but here’s what my favourite herbal reference has to say:BARTRAM’S ENCYLOPEDIA OF HERBAL MEDICINE by Thomas BartramULCERATIVE COLITIS. Ulceration of the colon with stool frequency, abdominal pain and bloody diarrhoea. Mucous lining undergoes steady erosion with abscess formation. Colon becomes narrower and shorter. Ineffectual straining at stool leading to nervous exhaustion. Worse in winter. Complications include perforation, fistula, rectal bleeding. Condition is now known as ischaemic colitis.Differential diagnosis. From irritable bowel syndrome, dysentery, nervous bowel. Cracks or ulcers at corners of the mouth are often a good marker of UC.Alternative treatment. Comfrey (membrane regeneration), Goldenseal (antibacterial), Cranesbill (to control bleeding), Poke root (intestinal ulceration), Wild Indigo (antipyretic).Tea. Combine, equal parts: Agrimony, Comfrey, Meadowsweet. 1-2 teaspoons to each cup boiling water; infuse 5 minutes. 1 cup 3-4 times daily.Fenugreek tea contains healing mucilage that soothes irritated membranes and assists peristalsis by eliminating excess mucous.Powders. Formula. Marshmallow root 2; Cranesbill 1; Goldenseal half. Mix. Dose: 750mg (three 00 capsules or half a teaspoon) thrice daily.Acute condition: 2 hourly.Liquid extracts: Formula. Wild Yam 1; Marshmallow root 1; Goldenseal quarter; Hops quarter: Stone root quarter. One teaspoon in water thrice daily.Tincture. Greater Burnet BHP (1983). 1.5 in 45 per cent alcohol. Dose: 2-8ml, thrice daily in water.Peppermint oil. 2 drops with meals.AIoe Vera juice. 2-3oz juice thrice daily.Comfrey tea. English traditional.Slippery Elm . Quarter to half a teaspoon in water thrice daily.Diet. Fast 3 to 10 days during which no solid food is eaten. Abundant fluids, apple juice, carrot juice, herb teas, spring water. The fast is broken slowly by a bland diet of ripe banana and Slippery Elm or dried milk powder. Baked apple, steamed vegetables, cooked potatoes, well-cooked well-chewed brown rice, steamed fish, low-fat cheese, unpasteurised yoghurt, carob bean powder, soya milk. Avoid dairy and wheat products and high-fibre foods. Gluten-free diet: success reported.Supplements. Daily. Vitamin A 15,000iu, Vitamin B-complex with high Vitamin B12. Vitamin C 5O0mg. Kelp 800mg. Vitamin P (Buckwheat leaf).Cold compress over abdomen to reduce inflammation.Colonic hydrotherapy – cleans the colon of accumulated wastes.

  29. Karen M says:

    I’m very sorry to hear your diagnosis, Dave. Your experience is one reason why I don’t actually have a definitive diagnosis (i.e., not gold standard), just some kind of IBD. I prefer to avoid mainstream medicine whenever possible, and use other alternatives. Acupuncture is wonderful. (btw, my acupuncturist has moved back to the Vancouver area, and is only here (in Phila area) every few months to take care of us. He is wonderful, and his wife is an excellent– and I mean excellent– massage therapist. I can supply an email, if you like.)At first, it was my homeopathic practitioner who told me that a vegetarian diet was not working for me, that I needed to eat something with some iron in it, preferably some beef or liver, at least occasionally. More importantly, she said that I also needed to quit eating wheat and dairy, which I had actually been eating more of while trying to be a vegetarian for several years. Perhaps I had reached a personal tipping point.Giving them up made a significant difference, but I tried to overcompensate for those losses with soy substitutes, and eventually had to give that up, too, because I’d get a stomach ache soon after eating anything with soy. Not as big a loss, though.FYI… there is a Candadian company, Kinnikinnick, that makes tasty gluten-free baked goods. I only get those that area also dairy and soy-free (except sometimes soy lecithin). I especially appreciate their bagels for sandwiches. Not cheap, but well worth what I pay. If you want pasta, the best one I have found is Tinkyada. They use brown rice, and you can really get a decent texture. Don’t even bother with any of the white rice varieties. Too sticky. Plus, Tinkyada makes different shapes, penne, lasagna, etc., and even a spinach spaghetti. I’m guessing that your doctors have not suggested any dietary changes, and that if you were to ask them, they’d say it doesn’t really matter. They would prefer that you just take their drugs, and if you are eligible, enroll in one of their studies. Perhaps your diet is not the issue, but it doesn’t take long to find out. And there are no really negative side effects. (My homeopathic practitioner, on a later visit, also suggested I would benefit from some 70% dark chocolate. You might like that, too. It is a mood enhancer. So are Paul Newman’s wheat free/dairy free Fig Newmans. And if you can get those Omega-3’s in food, all the better. Sardines are a really good source, without the Mercury issue, and are more palatable if you put them in soup or something. Sort of a quick and dirty chowder. (I only buy them in olive oil, not soybean oil.) Walnuts, too, are pretty good. Also, if you read up enough on the recommended balance of Omega-3’s and 6’s, you may find, as I did at one point, that I was getting too many of the 6’s for the 3’s I was ingesting. That can be inflammatory. Check out the oils that you’re using… You asked about why… I have wondered whether the trigger (this happened in my 40’s), in addition to stress, was because of some dental work I had done, or perhaps a dose of antibiotics I was prescribed (unnecessarily, I might add) for a case of “bronchitis.” But stress is most likely a factor, perhaps an acute stress, followed by a chronc and ongoing level of stress. Your idea of following Seth Roberts’ ideas is a good one. My own trials have taught me that any kind of organization must begin with the body. Try to engage all of your senses, if you can. I suspect that you, like so many of us, live too much in your mind, perhaps because you don’t want to miss anything. I know I have that issue. In fact, I used to resent sleep, for the same reason. However, rest, i.e., even just being horizontal, is a good thing. But sleep is better. Insomnia can be tricky, though, especially when you are in pain. I tried white noise, nature sounds, music. None of it worked for me. What does work is turning on my NPR station at night because they switch over to the BBC and I find their voices, etc., soothing. Also, it occupies thatside of my brain that needs to be busy, so the other side can tend to my body, if that makes sense. It’s sort of a division of labor. Music, etc. just seems manipulative emotionally, and my mind continues to race. Sleep/rest/relaxation cannot be overemphasized; if you don’t get enough, the cortisol just goes cursing through your system. And, sometimes, I’ll have a bowl of cereal (wheat-free) with almond milk (better than rice milk, if you can have nuts), and a sliced banana before bed. You might want to avoid restaurants for awhile, too, or at least chains. It’s rare to find one where both the kitchen and the wait staff really “get it” when you tell them what you cannot eat. Even those who mean well, often do not realize the import of something they add without even thinking about it. However, as the author of “Against the Grain,” wrote (paraprasing): make it your goal to order the way Meg Ryan did in “When Harry Met Sally.” I found that quite a challenge, but I’ve gotten better at it. Travelling was (and sometimes still is) pretty difficult. Several years ago, while in Europe for about a week, I had an epiphany, in which I realized that, although I had taken my body for granted, I hadn’t really trusted it. So, while there, during my mini–gi-crises, I would repeat to myself that I trusted my body, etc., I don’t actually remember everything I said then, but it was whatever seemed appropriate at the time. It was an important realization. Just ignore whatever does not appeal from above. I only offer these hints to help you move along the pathway of healing more quickly than I did. Best,

  30. Dave Pollard says:

    Again, thanks to all for your kind words, suggestions, stories and links. As my subsequent posts demonstrate, I’m taking all these thoughts to heart and incorporating them in my self-experimentation program. And, so far, it’s working.

  31. mary says:

    Hello. Just happened on this site through my daughter’s meanderings. no time to write alot. you’ll follow up or not…..Look up ” Bodytalk” on the web. i am an ex-RN, believe in non-invasive healing modalities. You are probably in an area large enough to have practitioners. Also begin w/ really loving ” you” very deeply before you do anything. Good luck , Good light. MM

Comments are closed.