Gettin’ Tired of Having my Ass Whooped.
by Maxi on Jul.26, 2010, under Crohn's, Loudmouth, Medical
Kind of literally. It’s time for one of those bitchin’ about my health posts including my Crohn’s situation, my heart developments, and just the general state of feeling like shit. This is by no means a pity post. The best way sometime to see results is to put this kind of stuff out there and see where the chips may fall. I do so at the risk of getting some well meaning but not really helpful suggestions. Trust me, I’ve heard most of them. They are like a bad penny,…um whatever the hell that means.
They're out to get me!
Some of you ( and I thank you ) have read my previous posts on my many hospital stays. This post is not about that stuff. This post is basically to share the fact that I am at my wits end with this disease. I know for a fact that many people, unlike me, lead very productive lives with Crohn’s. My situation is different. All those with Crohn’s have different situations and I understand that. I’m posting to get the message out that I need to approach this thing a different way. I am willing to travel to any part of the planet just to have a day where I don’t feel like ass.
So lets back up here and explain a few things, like what I deal with. I always wake up with gut pain. I take meds before bed and I do get OK sleep, sure that could be better too. But my day starts with pain. So the pills are popped and the morning ruined as I wait for things to kick in. Kick in enough for me to be able to sit upright. Thats an accomplishment. Some days when I get past the start of my day one would see me and think I am 100% healthy. Partly I put on a good game face but sometimes, yeah, I feel OK. But at some point that will fade away. I still have blood in my stool. I still run to the head 6 – 10 times a day. When I do have a doctors appointment, other than with my G.P. Dr. Scheeler ( who at least gets some things rolling in the right direction ) it’s usually radiating me in some diabolical machine that, thanks to 6 years of testing, give me a fear – claustrophobia that is off the scale so I have anxiety and usually can’t go thru with the tests. Physically I get sicker. Its lame, I know that. I try to endure it. It doesn’t work and usually my protests fall on deaf ears. Dr. Scheeler already thinks I have had way too much radiation as it is. I joke and I say “Cure me before you kill me – yes, its on a T-shirt now! ) but it’s true.
Dr. Sabel at South Denver G.I. has basically thrown his hands up in a matter of speaking. You know he’s at his wits end when he’s the one suggesting I get a second opinion, and he’s the best in the Denver area. I’m proud to have him as a doctor and since we’ve known each other so long I can call him friend and know he’s giving it to me straight, and he really doesn’t know what to do with me at this point. He suggested The University of Chicago’s Gastroenterology Department. I’ve also looked at Penn State Hershey Gastroenterology – UCLA’s Digestive Disease Center – Hell even the Royal College of Physicians & The British Society of Gastroenterology in London. I wouldn’t rule out Gastroenterology in China for Christ’s sake! Like I said, I will go to ends of the earth to find some kind of relief.
As it is right now, most familiar with Crohn’s would suggest having my Colon removed. This poses the problem that my Crohn’s could and would most likely jump from my large intestine to my small. Currently this is an actual concern, doctors want to do more tests to make sure that hasn’t already occurred. Crohn’s Disease can effect any part of the digestive tract. From the tip of your tongue to your wazoo. For me, as I am right now I wouldn’t want to go thru the surgery to remove my colon only to have this thing go nuts and invade my small intestine. If I think things suck now, well that…..
I am throwing this post out there to see if anyone out searching who comes across it may be able to offer additional thoughts. I have heard there are researchers looking into stem cells. That piqued my interest so I am looking into that myself. I’m not really interested in small studies, I’m looking for the heavy hitters, the pioneers of research. It may sound arrogant on my part, but I am looking for a doctor or a scientist who I can partner with to, as selfish as it sounds, just help ME. I’m paying my dues with this damn disease I think it’s not unreasonable to say that.
I’m not going to dwell too much on the heart issue in this post. I’m sure my heart is only showing the wear that my body has to endure when I get tons of drugs, deal with gobs of anxiety and thanks to the wild card of being adopted, it could be hereditary. I’m sure it is with my luck. Having heart issues, the last thing I needed, really is the least of my worries at this point.
So there it is. I wanted to get this posted and out there into internet world to see if anyone has any thoughts, or – I hope not – if someone’s having the same problem as I am.
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2 Comments for this entry
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This Is The Max Murdok Program!
Greetings people of Earth! I'm Max Murdok and I do a lot of stuff. This quirky li'l blog covers my Crohn's Disease (helpful info & lots of bitching about it) Disturbed Satire & Opinions, Odd ball graphics, LIVER music, Nerdy Web & Open Source stuff, my podcast show, and plenty of social commentary based on my sympathetic contempt of humanity.
You will find that generally speaking I am not in compliance,...with anything.
So please, jump in n' join the drivel by leaving comments. You can leave text, audio, even video comments. You can even call me via Skype. Stay updated by subscribing to the RSS feed too. So thanx for popping in, I hope you make it a habit! I look forward to shooting the proverbial with you.
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July 29th, 2010 on 1:58 pm
A visitor to the blog, AJ, wasn’t able to sign up to the blog…if anyone else has that problem, please let me know.
Anyway my new friend here AJ sent me an incredible email of what he intended to post and I wanted to share that with you all. There are so many jumping off points to look into now. I know a lot of this will help me and I’m sure if you are someone out searching for info on Crohn’s, especially related to diet you will find this post as helpful as I did.
AJ again my friend, I can not thank you enough for contacting me and sharing this information! THANKS!
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Long story made short: I’m a biochemist, diagnosed with CD 2-1/2 years ago (biopsy confirmed). Since then, I’ve been on a diet that excludes polymeric carbohydrates- mainly starch- and has plenty of meat. I’ve been in remission ever since, on diet alone. Some of the work done by Dr. Alan Ebringer in the UK suggests CD is caused by molecular mimicry with proteins from a very common (and antibiotic-resistant) organism called Klebsiella pneumoniae. You can’t get rid of it; it’s like E. coli, everyone has it. You’d get it again if you got rid of it.
Anyway- the diet involves no starch, and plenty of meat. In fact, one book suggests a diet with very low carbohydrates (no more than 72 grams/day) will put 90%+ of Crohnies in remission, and keep them there for up to 3 years. See attachment. I would recommend combining this with a NO GRAINS diet: none of those 72 grams should come from wheat, barley, or rye, and no corn, soy, or rice for at least the first 6 months. I am able to eat corn (as corn chips) and rice (in a bol from Chipotle) now after 2-1/2 years of staying away from them.
As to what to eat: meat. Read “Fat of the Land” (available as a .pdf on the web for free) and “Good Calories, Bad Calories” by Gary Taubes if you have any doubts as to the healthiness of this. You will need to do a lot of cooking; I can only eat at two places other than home, except perhaps for an “honest” steak.
But on a daily basis, I suffer not at all from CD- no intestinal pain, no diarrhea, no blood- and my blood tests have all come back down to normal, including my C-reactive protein and sedimentation rate. I used to get pains in my transverse colon; they are gone now. I was forming a stricture there, but it has not bothered me for over a year. I am strong again; I can go jogging, and occasionally jog with my dogs: 330 pounds of dog, all at once. I go caving again (see image).
I also recommend yogurt, made in the fashion described by Elaine Gottschall in “Breaking the Vicious Cycle.”
Lastly, I recommend supplements:
Coconut oil: 1-3 tablespoons/day
Fish oil: 1-3 capsules a day, or 1-3 teaspoons
Vitamin D: 5,000 IU/day to start, tapering off to 2,000 to 3,000 IU/day (DO NOT BELIEVE YOU GET ENOUGH FROM SUNLIGHT, no matter where you live!)
Selenium: 100 mcg/day (do not overdo selenium- it is toxic if you get much more than 400 mcg/day or so)
You may also look into E. coli Nissle 1917, produced as “Mutaflor.” There are good data in the literature to support its use:
http://mutaflor.us/
I believe Ebringer is right, and I believe that by “feeding” K. pneumoniae, we hurt ourselves. There is a very logical progression of the disease, and putting the blame on K. pneumoniae- or perhaps another enterobacterium, as the biochemistry of these organisms is so similar- would explain just about everything we see with this disorder.
Lastly, you might look into low dose naltrexone. The side effects are few; it is inexpensive, safe, and one or two studies (along with hundreds of anecdotes) show it is safe. However, it is tough to find a doctor that will prescribe it.
-AJ
August 21st, 2010 on 8:40 pm
Never heard of your dirt, but I have found that a gluten-free diet has helped me immensely. Also now taking 50,000 units of vitamin D once a week. My mother, sister, and brother all have Crohns too. I also have Sjogrens, so it gets confusing. Also what they call seronegatve RA? What a mess. I think I will try the meat diet, wondering if potatoes are OK? Also, I’m devoted to my nightly wine … It seems like a fair reward for getting thru the day. Any thoughts?