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Beating Crohn's

Oh, where to start?

I've had Crohn's since the age of about 6 (2001.) Stomach aches at every meal, certain foods setting me off for days at a time. I was misdiagnosed at least half a dozen times, and no one would listen.
When I was 2, I got influenza A very badly- IE hospitalized and almost died bad. I think that kicked off my immune system, as I've gotten sick from a catchable disease no more than 5 times since. No colds, no flu, etc.

First, it was chronic constipation. I couldn't go to the bathroom because of the pain (blisters, bad flare.) Got over that flare slowly.

Later, it was 'early onset acne.' I had eczema firing up on my arms, chest, and face, so bad it bled. NOT acne.

Another round of 'chronic constipation,' and so many laxatives at once that I vomited 2 liters to get rid of them. (Apparently a 'normal side effect.')

Finally, 4 years ago, age 15, I was 4'8", and 62 lbs. I went to a specialist, who hospitalized me instantly. I didn't think it was that bad- but seeing pictures of myself from back then is scary. After 4 days, 29 bloodtests, and MRI, a CAT scan, a bone density test, another round of laxatives, an endoscopy, colonoscopy, and biopsy, it was FINALLY determined that I had Crohn's. My inflammation was 11 or 12 (Forget the scale, sorry.) I was told my immune system, on a 1-10 scale where 5 is a healthy adult, was basically a 9.5 or 10.

I got a round of oral steroids. I don't know how long the treatment was- my little body was in roid rage the whole time. I don't know what month it was, what I did or said, or what it felt like. I only remember being furious, sick, and shaking the whole time. It was hell.
As an aside, during this time, I came to love every food I ate while on steroids. I previously loathed tuna, but eating it during this time has made me love it. Go figure.

During the steroids, I started MP-6. A local alchemist was able to mix it specially with flavour- I probably owe him a lot.
After the treatment, I am told it was about a month, I gained 6 pounds. Once the MP-6 kicked in, I still had pain. Everyone said I needed to heal after so many years of inflammation, but it kept getting worse. I didn't gain any weight, and the MP-6 caused joint pain.
I was told it was the only option, that I had to live with it.

One day, I couldn't stand up. My knees literally gave way with any weight, and hurt worse than the Crohn's ever had.

I threw away the MP-6, told the doc to shove it, and decided to beat Crohn's with willpower.
I spent two months testing every food to see how I reacted. Rice, bad. Milk, good. Soy, very bad. Carbs, very good. Spice, not bad in small amounts. Fiber, bad. Cheese, yogurt, kefir, very good.
I looked into the genetics, predispositions and theories of Crohn's, and the action mechanisms of white blood cells. I also found out I was anemic, and found out about a certain micro organism that helps free up trapped iron for consumption- available in a probiotic.
I started taking probiotics, yoga, and biking. I stopped eating sugar. No candy, no soda (never liked it anyway.) I drink milk, fruit juices, water, or black tea. I learned to cook, bake, grill, and fry damn near everything, so I would never be without a good meal. It was slow at first- fast forward to now.

Zero flares since dropping all medications. I now weigh 120 lbs, 6'1" tall. I can bike 40 miles, do 100 situps, 25 full-hang pull ups of any position, and outrun anybody on the track team. I have no fat beyond organ fat, and seem unable to gain any. If I don't gain muscle, I don't gain weight, period. I can gorge and laze for a week and lose weight, or work out for two days and gain some.
Trouble is, I've plateaued. I mean, a 6-pack and 9.5" diameter biceps isn't bad, but I was trying to reach 140 or 150 pounds.

I went back to the doc in my current state. Healthy, tan, muscled, heavier, and pain-free. They told me I should restart MP-6, and since it had been so long, they needed to do the ENTIRE diagnosis process again. All the tests, scans, colon scope, etc. because 'It might have changed. It mgiht not be Crohn's anymore.'
Sorry, but that tore it. I laughed in their faces and walked out. I later checked the medications they wanted to give me- all have nice kick-backs to prescribing doctors/institutions. Crohn's doesn't 'go away.' That idiotic statement locked me into this- being stronger, faster, and healthier than the vast majority of 'healthy' individuals in the nation. I want nothing more than to be a 'What's YOUR excuse?' role model.

I know nearly everyone needs meds. I'm not saying the whole 'suck it up and iron will' is an option- those steroids jumpstarted my long-delayed puberty. (I only just started shaving at the age of 19.)
Honestly, I've never felt healthier. I look like a twig. Small bones, tiny wrists, skinny jeans- until I get my shirt off. My roommates' reactions have all been along the lines of "Holy **** your muscles!", but going shirtless isn't an option.

So, open question- how do I break my glass ceiling of 120? What's it take to round out? And, does anyone have some quick, high-intensity workouts for forearms and shoulders? I'm a 16 credit college student going for a B.S. in Chemical Engineering, with a minor in Chemistry, and a microbiological processing focus- so I only get half an hour or so to work out. Aerobics don't do me any good.
Gee, that was longer than I thought it would be. Thanks for sticking through it.

Oh, and Hi.


Unrelated but coloring info:
I also have a bum eye (Small bone in the muscle stopped it from opening fully.) I was told surgery would do nothing- it wasn't going to change. Found some exercises, overcame it in two years. You can't tell now.
I was born with a curved spine- just a touch of hunchback. Once again, working out and forcing good posture. Got over it.
Oh, and I have a certain valve in my heart with 2 'flaps' instead of 3. Sometimes I get a little oxygen short, no matter how much I breathe. It isn't bad, and I've worked into longer and more intense cardio with the biking. I also got heat stroke twice, so I try to stay cool and rest on hot days. I love running and working outside, but I know the pressure behind my forehead means it's time to stop. (I have trouble sweating to cool down. It just doesn't happen.)
Finally, I have mild operational Asperger's. I was extremely shy and introverted, and afraid I would make no friends and be unable to leave the room in college. I couldn't even order food without freaking out.
Decided to get over that. Bought a horsemask to go with the freshman beanie. Got tons of pictures taken (With girls!), wound up on a local radio station's social media, etc. Decided that if a horse could get action, I could. Dropped the mask, bam. I am now president of a charity student org that raises thousands every semester, and I give briefings to a couple of hundred students. I've had two successful job interviews, I teach local high school kids science with hands-on experiments every so often. I've been asked to run a charity event (Humans Vs. Zombies) at a local ranch for 1500 kids this summer, and I have an internship offer at an ethanol lab. Long story short, sheer willpower seems to beat damn near everything.
 
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Jennifer

Adminstrator
Staff member
Location
SLO
Hi TheSilverhead and welcome to the forum. :)

Even though you aren't currently in any pain (which is great), you are still experiencing unexplained weight loss and that needs to be checked out. Even if you don't want to continue with medication you still need to have proper routine testing done to make sure that everything is ok on the inside. There is no cure for Crohn's unfortunately so even though we feel fine sometimes that doesn't mean that we stop testing and treatment. At the moment your current treatment is diet and exercise yet no matter what treatment you go with you still need to have routine scopes done. I'm sure your GI will be understanding and continue to run tests even though you chose to not be on medication at this time.

As for wanting to gain more weight and tips on workouts, feel free to check out the Diet, Fitness, and Supplements section: http://www.crohnsforum.com/forumdisplay.php?f=17
 
I beat IBD by removing the causes of Crohns/UC. Gluten/dairy. Then using slippery elm bark powder in water and a green drink of vegetables and fruit. My intestines are 100 percent cured.
 
nice story, sounds like you have had your challenges like all of us. 120 lbs and 6'1" is pretty skinny. I was 122 lbs 9 months ago and I'm 5'10", now i'm 140, but i should be 150. it's unlikely you beat crohn's, but a fecal transplant has been reported to have cured crohn's by researcher thomas borody, follow link below. You should definitely pursue all available medications though.
 
I'd say go for a middle way - not sure running all tests all over again when you feel like a champ is really needed or do any good .... however, I would say running some labs and a colonoscopy to see that you are really in remission would be a wise choice. This will ensure that there is no silent inflammation causing damage and maybe the weight loss.

Good luck and great to hear that you are feeling so well ! Keep excercising and leading healthy lifestyle - it may be the key in your case :)
 

Jennifer

Adminstrator
Staff member
Location
SLO
nice story, sounds like you have had your challenges like all of us. 120 lbs and 6'1" is pretty skinny. I was 122 lbs 9 months ago and I'm 5'10", now i'm 140, but i should be 150. it's unlikely you beat crohn's, but a fecal transplant has been reported to have cured crohn's by researcher thomas borody, follow link below. You should definitely pursue all available medications though.
Long term remission does not mean it's a cure wildbill. I was in remission for 14 years after my resection but I'd never claim that resections are a cure. FTs for IBD are still experimental and it is exciting and I am hopeful but you cannot claim it as a cure.
 
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