Hi everyone!
I'm new to the forum and want to share a blog post I wrote about
my story of being diagnosed and how I manage it now without medication, although I talk about
how I did initially have to take a corticosteroid and antibiotics. I'm aware that there is no one "cause" for colitis but I strongly feel that the ingredient carageenan played a huge role in making me sick. Feel free to read and give me feedback. I'm not trying to say people shouldn't take medication for this disease but merely offering my experience in hope that it could possibly help some people.
[very sorry but your blog contains links to an affiliate program that you benefit from so it is not in accordance with the TOS of HW.]
**update** posting the contents of the post below. I actually don't benefit from the affiliated links on my blog, that was not my motivation in linking my blog to this post, but the blog host does benefit from these links so I can see why it's wrong.
**Disclaimer - I am not a doctor and my intention is not to give medical advice. I am just talking about
my own experience.**
Hi everyone!
So today's post is going to be a little different.
I haven't posted much on this blog to begin with, so any readers who don't already know me will be unaware that in May of 2017 I was hospitalized due to an infection in the right side of my large intestine. This first initial time, I came down with a fever and had severe pain in my lower abdomen. Initially I thought it was appendicitis, but it was confirmed that my appendix was fine. I was supposed to go for a colonoscopy months later as that would have apparently shown if I had an inflammatory bowel disease, but I felt better at the time and didn't think it was necessary.
Fast-forward a couple months to the end of October, and my fevers started coming back. I was constantly fatigued, and a myriad of other new symptoms appeared which I won't describe here as they're gross but they were all basically the symotoms of ulcerative colitis, which I know in hindsight. I was stubborn, and thought they would go away eventually, but instead I just got sicker and sicker. I had started researching what I could do to help the symptoms I was experiencing, and cut as much acidic food out of my diet as I could. I found "gurus" who had apparently healed themselves from Chrohns and colitis naturally (this was after I finally concluded on my own that I did, in fact, have some form of inflammatory bowel disease) and followed their advice, buying expensive probiotics and basically limiting myself to eating nothing but plain pasta, rice, bananas and vegan protein powder made without soy. It was hell. But those foods were also basically the only things that didn't cause me pain, so I didn't have much of a choice. I couldn't eat much of anything anyway due to lack of appetite. But regardless of all that, thinking I could heal this on my own initially was irresponsible. I was already too sick to control my systems, although I definitely think what I was doing slightly improved them.
Finally in November of 2017 I went to the doctor, a few days before Thanksgiving, and described what was going on. I had lost so much blood and developed so many deficiencies by this time that my heart rate was abnormally high, around 140 BPM resting, which was incredibly scary. My doctor instructed me to go right to the ER, and in the hospital was where I would spend the next week, as well as where I would get the official diagnosis that I had colitis.
This was all very confusing and disappointing for me. While I know that veganism isn't a cure-all for any health condition, I couldn't understand why after spending so many years being so conscious of my health, something like this would happen to me. I yearned to understand, but the only answers that I got were that there's no one specific cause for colitis and no cure. At that point I thought I would have to deal with this disease for the rest of my life, and take medication in order to not get sick again, something at 23 years old I never imagined I'd have to do. Through research I found others who had apparently healed colitis by going vegan or had improvement in their symptoms by eliminating meat and dairy, but none of that helped me as I'd already been vegan for nine years.
In the hospital I was given antibiotics, which killed the infection I'd been developing, and towards the end of my stay they gave me a corticosteroid. Let me stress that this steroid initially is what healed the severe inflammation I was experiencing, however it was prescribed to me for a minimum of four weeks, and I only took it for two.
Initially I planned to listen to my doctor, but the prescript
ion they gave me for it only lasted me two weeks and by the time I finished it, I was no longer experiencing symptoms and almost felt back to normal. By the time my doctor was able to see me again, I had been off it already for about
a week and was only taking probiotics and anti-inflammatory herbs like boswellia to keep the inflammation from coming back. She told me it was necessary for me to take it an additional two weeks, and then she would taper me down, but after thinking very seriously about
it I decided I would stay off it and keep it in case symptoms began to slowly creep back up on me. For about
a week or two, everything was normal, but I'd run out of probiotics for a couple days and had stopped taking boswellia due to not thinking it was necessary anymore. I got a mild fever and experienced diarrhea again. Again, irresponsible for me to not go to the doctor, but I decided I would see if I felt better once I took probiotics again and boswellia. My symptoms went away after that, and I distinctly remember when I took probiotics again after a few days I had a pain in my abdomen as if whatever nasty development had been taking place was expelled - my body was strong enough now to heal without heavy drugs - and after that my symptoms went away, and have been gone since.
I officially haven't taken any medication since two weeks after being diagnosed (I also never took the anti-inflammatory medication I was prescribed to begin with). After being discharged from the hospital I eliminated a list of things from my diet for about
three months, such as caffeine, alcohol, spicy food, soy protein isolate (which has been shown in some studies to have a reaction in the body similiar to dairy; not to be confused with natural things like tofu and tempeh), and anything with carrageenan, while adding certain things like daily probiotics and fermented foods which contain good bacteria for the digestive system.
I started re-introducing certain things the past few weeks when I was comfortable, such as coffee, and vegan meat substitutes, and those haven't had any adverse effects.
After so much trial and error, I seem to have narrowed it down to carrageenan that made me sick, which I'll never eat again. After thinking about
the timelines of eating certain foods for the first time that contain it and continuing to eat them over consecutive months, it coincides perfectly with when I first initially got sick and when I got sick the second time in November. If you're not familiar, carrageenan is an ingredient used similarly to gelatin that studies have shown causes colitis in rats (not that I condone animal testing, but the outcome is still there) (great article on the dangers of carrageegan). I truly think being predisposed to having digestive issues because of family history, plus stress, and a trigger such as an ingredient like that is what caused me to get sick. I could be wrong, but I suppose I'll find out as time goes on.
If you have digestive issues I'd definitely recommend staying as far away from anything with carrageenan in it as possible. Some of the things I was eating that contain it are vegan sour cream and Follow Your Heart's vegan egg, but it's in many non-vegan foods as well that require thickeners. To this day I continue talking probiotics but anti-inflammatory herbs like boswellia are no longer necessary.
I know most people would say I should've listened to my doctor but this has worked for me and if it stops working in the future I'll be the first to admit it. I could have just taken the medication and never found out that for me personally I could eliminate and change a few simple things and stay in remission. Doctors will tell you that this is a chronic disease that has no cure, but I don't necessarily believe that's true in all cases.
Time will tell.
I should also add that while I was diagnosed with colitis in the hospital, the last time I saw my gastro doctor she mentioned that my bloodwork showed that I don't have the antibodies indicative of either Chrohns or colitis, but still insisted that I have one of the two and prescribed me an anti-inflammatory medication that has side-effects basically the same as the symptoms of colitis. Which is yet another reason I used my own judgment instead of blindly listening to her. Because this makes absolutely no sense to me.
The future, and whether or not I have another flare-up, will be the greatest test to prove if carrageenan is what caused me to get sick. After the first initial bumps in the road, my life and digestive system has gone completely back to normal which I'm very thankful for. I want to stress also that this is merely just my experience and that I'm not saying anybody with colitis should stop taking their medication - I'm simply just offering my experience so people can take what they want from it.
If anybody who happens to read this wants me to clarify anything or talk more in-depth about
anything in particular, please feel free to leave me a comment and I'd be happy to.
Thank you for reading!
Post Edited (josielieder) : 2/22/2018 4:03:11 PM (GMT-7)