Intro:
I was diagnosed with UC back in 2006 right after I went off high school. I was wondering about decent amounts of blood in my stool that I have had for days and when I was close to fainting due to the lack of strength I was taken to the hospital the same night. That’s more or less where my UC story begins. I admit I have never heard of that condition before and I was completely outraged when the doctors told me I had UC. Back then 70mg of Prednisolone “fixed” the problem and soon I went back to a supposed normal life. To keep a long story short: since then the symptoms returned frequently and the spans of remission got shorter. Doctors always prescribed medications, without any mention of diet: Prednisolone, Mesalazine, Budesonide along with nutritional supplements. The last real remission was three years ago. Since then, I passed some “ok”-states (up to 6 BMs a day). Of course, I also tried SCD, TCM, yoga. Unfortunatel y, without any mentionable success.
Some more:
Besides my PhD studies I had and still have a professional band that has got quite famous in this area (with nearly 200 shows throughout the year, especially during the local carnival or “Mardi Gras”). My situation did not leave me any choice but canceling the PhD studies and focusing on the music – because music is my passion since I was little. Fortunately, most of my band’s shows take place around the city of Cologne so that we don’t have long driving hours – I could not do that if we had. But still, being a professional musician is a real challenge if your gut freaks out and you’re weak as hell. As the frontman, I have to be at 102% every time, because people pay a lot of money to see the show. No excuses. It regularly happens that I immediately go right up the stage after I spent some decent time in the bathroom and go back there right after the show. During the show, my Adrenaline seems to suppress every signal emerging from my guts (Hallelujah! ). Still waiting for the day I shit my pants on stage. Now that would be a fantastic show, right? Besides the “live music business” I work as a music producer and song writer in a studio that fortunately has a small bathroom right next to the control room. That’s a nice job, isn’t it? :)
Symptoms:
Constant bleeding, a lot of mucus going off, no cramps or pain, a little diarrhea (could not say it’s really liquid but still not nearly hard). When I sense I have to go to the bathroom, I VERY urgently have to do so. Sometimes a matter of seconds. I guess some shrubbery in my home town felt lucky about the dung I donated. Besides the things that directly affect my gut, I am feeling weak often times and have pain in the back sometimes, especially on the left side. No joint ache or whatsoever.
Mike’s Story:
When my UC flare started to become really worse a few weeks ago, I took Prednisolone for just a few days but in a fairly high dose (60 mg/day). I did this since my GE told me to in case it gets unbearable. He also said that if I restricted Prednisolone intake to a maximum of four days in a row, my body wouldn’t get used to it and there’d be no need to taper off. Anyways, for the first time in my personal UC history, I noticed that Prednisolone did not really help me get better. This was the moment I totally panicked. I thought “what can help me anymore if not Prednisolone? I will have to get my colon removed!”.
I spent hours reading online and watching videos on YouTube on the topic (as I did a few million times before). Since I could not ever really accept the fact that I would be sick for the rest of my life, I constantly tried to figure out the reason WHY I have this condition. What causes my body to rebel against my very own tissue lining? What is the core of this entire mess? I regularly read a lot of publications on PubMed on UC and Crohn’s. I figured, there’s one thing that most MDs around the world agree about: if you suffer from UC or Crohn’s then your immune system is somehow misdirected towards attacking your own body cells. Although doctors couldn’t, up to the current day, really tell how this condition develops. Inflammation in the body leads to a leaky gut, that too is more or less commonly known, if I get this right. Leaky gut means that proteins from the food that actually should be digested in your GI tract enter the blood stream and cause the im mune system to react. Now here’s what I conclude (just so you know, I am not a medical doctor nor an expert in biology): As a reaction to proteins in the blood, antibodies are built that specifically match these proteins and fight them. Once these antibodies circulate in the system, they are activated each time the body ingests the food that initially triggered it. A vicious circle. That’s why so many people develop food sensitivities and/or allergies during their flare-ups. Also people are incredibly more sensitive to histamine when their gut is inflamed (this is what my doctor also told me). Try it out: do not eat any food high in histamine (like smoked meat, fish, red wine, cheese, you’ll get an entire list on the internet) when your symptoms are bad. You’ll likely notice symptoms to weaken very quickly.
So I stumbled across this one publication (http://www.medicalnewstoday.com/articles/277860.php) that states that a 2 to 4 day fasting period triggered a “reboot” of the immune system of mice with indications that this also works with human bodies. “Broken” cells of the immune system get dumped and replaced by new, fresh ones. Also several documentaries on YouTube tell stories about people who relieved themselves from severe autoimmune diseases by fasting. Now, what happen’s when you fast (and you’re doing it right)? After two to three days your body completely switches into a state that’s called “Ketogenesis”. This means that there’s no glucose left in your blood and your body switches over to burning fat cells instead to get the energy. In this state, our body cells are said to reprogram as to pr otect and heal themselves (refer to the outstanding publications of Valter Longo). When I searched the internet for UC or Crohn’s patients that tried fasting and shared their experiences, I actually could not find much. Is it because it simply does not work or because fasting is so incredibly hard that no one wants to try it out? Or is it because this insight is relatively new and unexplored?
To cut it “short”: My question now is, since I think all of the above mentioned makes totally sense to me, does anyone of you have already tried fasting for multiple days or even weeks?
And I mean real fasting which means no food at all but only water and tea (plenty of it) so that the body can get into Ketogenesis and heal itself, detoxicate. I’m especially not talking about the kind of fasting where you skip a meal or two a day. I would love to hear your stories.
I am willing to share my experiences here if you’re interested.
I started fasting two days ago, so this is my third day without any food at all. After I thoroughly cleaned my gut with a mild laxative on the first day (Glauber salt), I only drank lots of water and green tea. That’s all. The first two days were really, really hard to handle. I was hungry all the time and hated everyone who ate or cooked something in front of me. I tell you, the urge to eat completely vanishes by the end of the third day. I even don’t feel weak anymore. I guess this is when the Ketogenesis starts to kick in. This time, I want to fast for only seven days as a first test, since there’s a lot of occasions in the upcoming weeks where I am literally obliged to eat and drink something. Difficult enough. If my condition should really improve after these seven days, I will totally fast for like 2 weeks or so in February again.
In addition, I decided to go on a complete vegan diet after the fasting period since I read a handful of patient experiences that claim that veganism “cured” their UC or Crohn’s. I know that the word “cure” is very strong and somehow inappropriate when it comes to UC, but I am willing to try everything to regain a normal life. Anyone on a strict vegan diet here that wants to share her or his experiences? Could not find much.
As you all know, I too think that there’s no such thing as a universal remedy – especially since every person and every organism on this planet is unique. So the things I have mentioned here might help some and don’t work with others. I am not a specialist and I am definitely not in a position to give advice. But if some of you feel like trying to fast and turn to a vegan diet afterwards, I really would like to hear about your progress and results.
If you want to, I can definitely keep you guys up to date on this.
Medications / Alternative Medicine / Diet Techniques Tried So Far…
Prednisolone – Always worked quite well accept the last time I took it (which was about three weeks ago)
Mesalazine – Actually, I could not really figure out whether there’s a difference when taking it or not. One time I took it on such a high dose that I had a renal failure. Make sure you don’t OD on these (I took 8g/day back then). I think that the enemas are more effective than the pills.
Budesonide – It helped when the inflammation was in my Colon Ascendens too (the upper part right after the small intestine). Still, this stuff seems better in terms of side effects than Prednisolone.
SCD – I was so amazed by this completely new perspective on the condition. I went on the diet the very next day I got the book. After a few weeks, I noticed slight improvement. But my UC came back some months later although I followed Gotschall’s instructions very strictly. Turned out my body developed antibodies to certain kinds of meat and fruit. I cancelled the diet about a year later.
TCM – Chinese medicine, especially massages of my stomach and back, gave me some relieve. I also tried acupuncture which seemed to lower symptoms temporarily. But since this appeared to me as fighting the symptoms instead of the core, I did not pursue this any further.
Diet low in histamine – A diet low in histamine really seemed to work for me each time I flared up. Of course, this does not fight the disease itself either, but it always gave me a great deal of relief. I recommend this to anyone suffering a flare-up. Histamine stirs up our (already irritated) immune system.
Imodium – Now that’s great stuff. At least in times when my UC is not thaaaat bad but still there. It helped me through several driving hours without bathroom, etc. I try not to use it unless I feel I have to since I think that my body gets used to it and I soon need more of the stuff in order to gain the same effect.
written by Mike
submitted in the colitis venting area
My name’s Mike and I was born and live in Cologne, Germany. I am now 30 years old, father to a daughter that was born in April this year, and I have a master’s degree in Computer Science. I also started working on a PhD’s degree. In order to do this, I had to commute about 70 km (1,5 hours by train) from where I lived. Not the easiest thing to do with a constantly bleeding gut that gives you only minutes to find a bathroom when it needs one.
