My name is Geof Djernaes from California in the US, I am 24, I suffered an intestinal parasite sr year of HS in 2006, I went into full remission from symptoms until mid 2010 after I graduated college. I was diagnosed in 2011 with UC after battling a year of debilitating symptoms tests and absolutely zero results. It is now my two year mark, without ever having experienced a good day that I didn’t pay for shortly after, that being said I am in constant pain with a moderate to severe condition (4 -6 on a good day 10+ on the bad), that I manage through 6mp, supplements and diet.
As my doctor tells me, “you are in a good state if you are only going ~5 times a day that’s ideal for someone in your condition.
Laughing outside, crying inside, I restate the facts; I am in constant pain, nausea, no bowel control, single, unemployed, worthless on car trips, and I can’t leave my house without the fear of desecrating myself in public, and IM NOT GETTING BETTER! how the hell is this a good state of life? PLEASE EXPLAIN IT TO ME? I lay in bed each night contemplating what hell awaits me on the other side and if it is better than the hell I am currently living with… then I wake up the next day for my body to just betray me all over again.
I’m not going to say living with UC is even something I’d wish on my enemies. I’m not going to sugar coat the bad days with phrases like overcoming adversity… You all know exactly what I’m talking about. There is no easy way to say I’m miserable and I am fine with living the rest of my pathetic life like this, while the only other option is to literally gut ourselves and tape an excrement pouch to our sides.
I dont drink nor do I smoke all that often, I am unemployed, I have been in some form of dr’s office or hospital 80+ times in the last 104 weeks of my illness. I have no faith in western medicine, I do not think they are trying to cure us, and I am very angry. This anger is not pointed at anyone but myself, I have let this go without putting my brain behind it for far too long.
Starting back in May ’12 while I was dealing with a Cdiff infection I decided it was time, I charted, graphed, and collated years of sickness into comprehensive month by month analysis as I crunched the science looking for answers. patterns emerged. patterns that showed just how useless these drugs are. patterns that proved There is no cure and the people who are looking are not being paid to work fast enough to be of any use to us in this life time, so that being said, it’s on us, its time to step up to deal with this thing with the two best weapons we have, time and intellect.
where does that leave us…? Diet. unless you have a chemical lab in your garage and are unafraid to experiment on yourself, DIET IS ABSOLUTELY EVERYTHING, what you put into your body comes out the other end and influences everything in between. The consistency, texture, nutrient group etc all have a part to play in the digestion process and that affects the outcome. It is easy to be blissfully ignorant, but with UC it is your PURPOSE in life to understand what foods are naturally therapeutic for your condition and the proper preparation / sanitation that goes into them
First I recommend probiotics, depending on the severity of your condition i would always start with liquid non dairy Live cultures in order to get your digestive cycles back under control, think about it like this, you have just been so sick for x amount of time that your body has to make up for, so take it easy! start with liquid because it will trickle through the small intestine and the large intestine, and after about a month of everyday use, switch to every other day. eventually you want to get into taking it in pill form for that delayed release and localized treatment.
okay so moving forward – what works? What can I eat? I spend all this time thinking about food normal people eat and it always sends me to the bathroom instantly with lingering effects for days? – I’m right there with you, and no matter how enticing it is to cheat or how hungry you may be you have to look at it as allergies.
let’s start with what doesn’t work so that you hopefully understand what does work and perhaps why. The biggest and most no compromise offender with any type of IBD is pasteurized dairy. You are allergic to Lactose (dairy) because you lack digestive enzymes that line your intestines that normally break it down, so without lactase you will be in a world of pain, no cheese, no milk, no dairy products, unless it is aged, raw or in very small doses. No Cheap meats, especially fast food meats, no pork, nix anything with high fat or grease, you are allergic to vitamin C, Citrus, and probably liquid vitamin D, Anything Acidic, say good bye to pepper, hot sauces, spices, most types of nuts, even peanut butter gets me, all cruciferous vegetables, ALL BEANS (even hummus),all forms of Corn are out of the question, coffee, Soda pop (especially cheap stuff), any citrus. Nearly ALL Alcohols (vodka and Sake May be okay in small doses, but it is still alcohol which strips your inte stinal lining), also be careful with tea but it entirely depends on the blend, Salt isnt necessarily a bad thing but for me I have found it mixes poorly with my medications especially prednisone, Instant noodles, MSG, basically anything cheap and unhealthy… dont eat it.
What works – Rarer Beef, cooked chicken/turkey, Raw / lightly cooked fish, vegetables, fresh miso soup, tofu, rice, Raw / Fresh milk (if the lactase has not been pasteurized out), Aloe Vera Juice, most non citrus juices diluted with water, nearly all fruits besides citrus, applesauce, diced peaches, potatoes, some celery, some carrots, egg / fresh flour wheat noodles, sourdough bread, eggs, etc * the goal is as fresh organic and healthy as possible*
Sauces & Condiments – i’m very temperamental, certain brands dont hurt me others destroy me, my best advice is to make sure you get as natural ingredients as possible you would be surprised at the amount of fake EVERYTHING that gets marketed as honey, soy sauce, mayonnaise, ketchup etc. if in doubt… make it yourself… its not hard and you will thank yourself for the skill sets later.
If you are approaching a flare – Eat light, one day of soup, water, and applesauce goes a LONG way in preventing a month of agony.
If I could recommend reading material – Primal Diet… just look it up online, dont get hooked into buying books if you don’t have to we are already broke enough, the point is eat closer to raw and let the natural enzymes in the food help digest the food you are eating, try not to let your body pull from its own severely limited resources, also alkalized water and eating right for your blood type… there is some genius in the concepts being brought forward, so its worth looking into… even if none of it really works that well.
I know how hard it is, waking up in the morning and trying to stay positive, trying to lift weights or walk around, knowing at any point your body is going to give out, and you just have to learn to take baby steps, and value what you can do, you are rebuilding yourself slowly and surely, so focus on that person and push to be better.
I did kung fu and tai chi fairly regularly before all this happened to me, and the principles chi, meditation, and chakra flow all work into a daily routine I set for myself, It is entirely important to find something light weight you can do such as yoga or tai chi, to help focus your physical body into performing. this will help you feel physically and mentally grounded as your body is waging war on itself.
the physical aspects of your life are key to remembering your illness is not you. you are you… and you are probably an awesome person besides the hell that becomes you.
When all this first happened, I had just graduated from college, I took all my money and invested it into a small business, and then I got sick, my business tanked, I didnt have student health Insurance, and I was not covered anywhere else. My family took me in, and when I started going to the hospitals I realized just how terrifyingly corrupt the medical system actually is. I wont go into the nitty gritty as each state in the US has its own insurance scams going on, but suffice to say because I am a white male 22-24 year old college graduate, with no spouse or child, I did not qualify for any of CA’s statewide medical coverage. No I was charged an absolute fortune for the ER visits and kicked around for several months until I was forwarded to a county program that helps Self Pay patients with their copay fees.
This program I am on was at first pretty terrible, but after 6 or 7 miserable months I FINALLY got my colonoscopy which proved i had UC, after that it was a lot more simple to get into a routine with the County GI Clinic, and the County ER’s and the local Medical clinics, things just became that much easier.
So all I am really saying, is that you need to seek out the programs that will help you, they are available, but you need to apply yourself, and dont take no for an answer. I procrastinated for so long… and the family members that have been supporting me have paid the price… a costly burden that was never theirs to bare.
Politics and Outro
we are a demographic that is not being catered to, medical researchers are not getting paid to take this disease seriously, pharmaceuticals are taking advantage of us. Insurance agencies dont even find us feasible so they are kicking us off of their plans or refusing to let us onto them for less than a premium they know we cant pay, and that is just disgusting.
Maybe I havnt seen the whole situation maybe I’m behaving arrogantly and if so I welcome god himself to enlighten me on the way this world is pushing forward to ease our suffering… because I have some words for him on the subject of why good people get the shit end of the stick… If I have offended, I apologize… but I’m not exactly shitting rainbows here… I want answers and the world around me is ignoring my questions.
So that leaves us all in a state of physical and psychological degradation … at that lowest point you realize your health is on you, not your doctors or the $$$ a dozen pharmaceuticals they are pushing on you… so you either give in or you do something smart, because the normal’s, the doctors… they arn’t here to help us, they have their own lives to worry about as we are locked inside our basements broke, broken and depressed shells of our former selves.
rally… and out think disease.
Where I’d Like to be in one year:
the fantasy – healthy. The reality – not miserable.
Colitis Medications I’ve tried/trying/using:
If there is a pill that someone said will fix me, I normally would have just taken it… well after 2 years of “just taking it” with no results I’m sick of this crap… literally. so here is a list of what I have been on, and some of the results. Right now I am only on 6 mp at 125 mg a day I feel nauseated and tired at times and when I dose down the flare comes back… I may take anemia meds if I feel I need them, but that is it. I just don’t see the point of paying money I don’t have for Asacol when it really doesn’t do anything for me, but mr doctor says… oh poppy cock studies have shown it helps etc etc… I’ll believe it when I FEEL BETTER…. I GAVE IT TWO YEARS… AND NOTHING.
One thing I will say, is that we do not need to be subservient to prednisone to live with this condition. REF– USE IT every chance you get unless it’s that or lose your colon, if you can get a Hydrocortisone or mesalamine enema instead it may be embarrassing or hard to deal with but there are so many horrible side effects synonymous with prednisone above 20 mg they are your best possible solution especially with proctitis or localized left sided UC
Immodium 1/day – For Tenesmus -> 6 hours of clarity leads to flare up & Possible cdiff
Metronidazole – For CDiff -> symptoms persisted for 2 weeks, then subsided tastes like poison
Mercatopurine 125mg – For UC -> Worked best so far, nausea & flares persist.
Mesalamine Enema – For UC -> cant keep inside, soothes inflammation
Asacol 800 – 1600mg- For UC -> does nothing. Flares & Nausea persist
Ratinidine – For UC -> No change observed
Hyoscyamine Sulf – For Tenesmus -> Gassy pain, Flares Persist
Sulfasalazine – For UC -> Constant Headaches and nausea, Flares persist
Ciperoflaxin – For UC -> period of clarity
Prednisone 20-50 For UC -> tastes like ass, makes you feel like ass, doesnt help your ass
vicodin – For UC PAIN -> Possibility of toxic mega colon cease immediately.
Paroxetine HCL For Anxiety -> headaches, sexual side effects, and a sunny disposition
B12/ Folic Acid/ Feosol For Anemia -> seems to work.
Fish oil 1000mg Digestion – Seems to work.
Vitamin D Gel/liquid – for depression -> FLARE & Bleeding?
Vitamin A & B No results observed
Chlorophyll – increase in acidity & Pain while contributes to acid reflux
Psyllium husks – No Results observed / minor pain
written by Geof
submitted in the colitis venting area