Ulcerative Proctitis-living life without meds or surgery

Hey ecoabundance,

I think it's a mistake to think anyone is pro med!
The harsh reality is that people with serious illness can and do end up on medications.
You'll find most people at least try to manage with lifestyle changes ( diet, yoga, alternative supplements etc). After a while things can force some onto meds.
No one wants to take meds. No one wants to go to see doctors either!
It's more that the illness can get severe, and it can happen quickly for some. Damage can become irreversible too.

Wish you good luck. I've tried every kinda alternative there is. I used to hate the idea of meds . It seems so 'unnatural'. Agony and inability to function makes people reach for any solution they think might work. It can be a brutal illness.
Good luck

I am a "hardcore" yogi - used to take class 7 or 8 times a week - and I have been in that world where "western medicine is poisoning people with drugs", the gut is your second brain, etc etc. It's basically illness-shaming the way some teachers in that community blame people for their health problems. But you know what, while those people looked down on me for my dysfunctional body, they also couldnt offer any real concrete treatment plan to heal my body. And i got more and more sick. NOBODY "wants" to take drugs. I was dragged kicking and screaming into taking steroids (my poor dr at the time had to spend hours talking to me to help me overcome my fears) - but i had NO quality of life, the pain was unbearable and I was pooping blood 20 times a day. I have a job where I need to "perform" regularly (teaching and giving seminars), colitis was making that impossible. Within 2 days on steroids the pain was gone and I could function at work again. I didn't want to take immunosuppressants either, i resisted as long as possible, until the day i pooped my pants at the beach and had to walk 10 minutes to find the nearest toilet to clean myself up. Then drive home 1 hour without wearing any underwear. At that point I decided enough is enough. And now, at the stage where I'm on "the last drug before surgery", if i need surgery I will do it. The positivity of many people who had surgery is infectious. Everyone remembers how much it sucked to have a colon and appreciates no longer being prisoner to a highly unpredictable and miserable disease. They are free to do everything they want, better than those of us who "only" have procitis.
Yoga comes from an era before western medication and while some ancient ideas are full of wisdom, sometimes they get things wrong, and their ideas about colitis are wrong to the point of being dangerous.
It's always your choice what you do but western medicine saves lives in a world where "alternative" methods usually don't offer a workable alternative.

We all have many "I'll never do's" until it becomes absolutely necessary for us to do those things. I did not want to take daily anti-inflammatory mesalamine/5ASA medications until my UC convinced me otherwise. I did not want to take thiopurines (azathioprine/imuran/6mp) and prednisone until I was flaring badly, 25+ bms a day, with knife-stabbing pains, and nearly incontinent. I did not want take biologics (remicade/humira) until I was a year into that same flareup, and prednisone-dependent.

Quality of life is all we have with chronic illness, and we do whatever is necessary to live well. Our own personal philosophy of not wanting to take meds, support pharmaceutical companies, or whatever is irrelevant if we are suffering and have no other choice.

Choosing between meds and alternatives is not a "want a pepsi or coke?", preference question where both are equally equivalent and effective for everyone. Those of us who take meds are not weak-willed or in-bed with pharmaceutical companies (that is absolutely in-love with everything they do and ardent supporters thereof). Rather we do what is necessary to live our lives and not suffer.

Most of us on meds have tried and failed many alternative treatments from diets to supplements. Having uc for many years means we've tried and failed many treatments over that timeframe. If alternatives worked equally well for everyone, then there would be nobody here taking pharmas. Unfortunately alternatives are only partial treatments (that is something we take in addition to our prescriptions) for some of us. For others, like me, alternatives did not help at all. There's a lucky few who only take alternatives, but much like moon-landings and strolls on the moon, few of us have that experience

In the end, I suggest we all try lots of treatments for our UC, but be realistic and pragmatic about it all. Results are what matter, and if any treatment doesn't put us within a remission after a month or two, then move on to something that will do so. And as compelling some passionate defenders of a given treatment are on the internet/youtube/etc, realize that what's one's miracle treatment, will have no affect on another, and might even make another's UC symptoms a whole lot worse. That's just the nature of UC. Many treatments have no scientific-basis of working at all, just the word of a random internet person.

I am generally up for discussing nutritional treatments, such as anti-inflammatory food, probioitc foods, substances that promote mucosal healing, or substances that moderate symptoms. I also have engaged threads about non-pharmaceutical approaches (like vit-e enema, or FMT - although FTM's future will be entirely pharmaceutical). I am even interested in diet threads if there is some scientific support. (SCD does not have it, but some evidence for Mediterranean).

Mostly I see these things as supplementary to medications used as primary treatment - but I often find accounts of maintenance plans that taper off the meds and rely on the supplementary measures alone.

Surgery is a tricky to talk about. People see the removal of the colon as so extreme and unacceptable. IF we find we have cancer in a lobe of the liver, a kidney, or the bottom of the right lung - we remove it. A few choose hospice instead of surgery and radiation and chemo. But somehow the pooping is so private and personal and that there is a mental block to seeing colon surgery in the same way.

Anyway, it is hard for me to approach your position without more information because it seems (maybe I misunderstood) that you have divided the world into some sort of eco-friendly natural group, and then the pro-medicine, pro-surgery, "western capitalistic" majority, and are negatively judging the majority. It is important to recognize that surgery was not a choice for most who had it. (Or they could have chosen death). It is important to realize that anti-inflammatory meds were very useful in letting people continue to participate in work, family, and social life. Some have more choice in the matter, and I can respect a range of choices as long as the choices of others is not being derided, and as long as there is basic respect for facts and science.

Can you say something more about how you respect other people's choices and at least affirm a belief in science and facts? There may be very interesting non-pharmaceutical non-surgical things we can discuss.

Post Edited (DBwithUC) : 2/25/2019 7:52:12 AM (GMT-7)