My Crohns Story from the Last Year

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Joined
Oct 13, 2012
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Hey all - splatkid10 here!

I've seen this forum for quite some time now, and whenever I tend to google something answers come from this site! I figured it was time to sign up and share my story.

A little background on myself to start. I'm a 25 y/o male and living in CA. I went to a service academy and commissioned in the Navy at 22. I'm currently working on my masters degree in engineering for the Navy and have orders to head to San Diego next Summer after I complete my degree (assuming the Navy doesn't separate me...more on that later).

When I was 18 and a freshman at the US Merchant Marine Academy on Long Island I became very ill, but no doctor could figure out why. By May of my freshman year I had a colonoscopy and the GI doctor in Stamford (CT is where I was born and raised) told my folks and I that I had inflammation in my ileum and it could be Crohns. This sent up many red flags because it could get me kicked out of school. (The USMMA required one to commission into the US Navy following graduation - so I had to be healthy). I got a recommendation to see a Dr. Asher Kornbluth out of Mt Sinai in Manhattan. This was hands down the best thing that has ever happened to me with this illness. He is the best and knows the best. It's worth the extra cash out of pocket - you only live one (yes...YOLO). Dr. Kornbluth said based on my biopsies and other evidence he couldn't conclude I had Crohns. He placed me on Budesonide for 3 months. The symptoms went away. I continued playing baseball in school, making fitness tests, sailing around the world on merchant ships, passed my license exams, and eventually graduated in June '09.

After graduation I moved to San Diego where I was stationed on a destroyer. I lived there for two years making two deployments and getting back to my old roots from high school playing competitive paintball in the "mecca" of paintball...SoCal. In June 2011 I moved up north to attend the Naval Postgraduate School and have been there since.

Last September I started experiencing stomach pains and by December saw a GI doc who suggested a colonoscopy and endoscopy. I noticed blood and mucus on my stool in early January right before the procedure. During the procedure the doc said I had a lot of inflammation in my ileum and a few ulcers up top to boot. He dx me with Crohns and put me on Entocort and AZA. At the same time I caught a C-Diff infection (I'm convinced from the procedure, but who really knows) and lost close to 30 lbs. By the middle of February I had been switched to Prednisone, the C-Diff gone, and I flew home to see Dr. Kornbluth for a second opinion. He agreed with the Dx and what the doctor out here was doing. Ok, so I bought some peace of mind.

I saw my GI doc regularly, and made my best attempt at SCD, but at the end of June I flew home again for Summer break. (On a side note, SCD for a 25 y/o male living alone is frigging hard!!!) I visited Dr. Kornbluth who had me get a CT scan of my abdomen. Still had active disease. At this point we switched from AZA to Humira. They wanted combo therapy, but I was worried about it. I cited the BridgeIBD group to Dr. Kornbluth (got to to find reliable sources right?) and he said Humira alone wasn't a poor choice. I've been on it since.

Starting in late February I got back into playing paintball competitively. I just played a major national event in Vegas last weekend and am playing another one in Orlando in two weeks. (Side bar - thank you taxpayers for funding my salary and allowing me these opportunities :) ) Getting back into a sport I love so much has been great for dealing with the crappyness (no pun intended) of this disease. I'm even starting to work on my thesis at school.

It has been stressful though, next Summer (hopefully post-graduation) I'll be placed in front of a review board to determine my fitness for continued Naval Service. I'm a little worried - it could affect the path my life leads drastically. But both options are unique, interesting, and have positive outlooks as long as I stay healthy.

I've been feeling fine up until this past Wednesday which is probably why I'm on here now after being dx'd 10 months ago! I've been feeling that lower right abdomen pressure and had some "fun" bowel movement days to say the least. I've been sleeping a lot. I realize I could be having a flare - which sucks. But all I can think is let me make it through October 29th so I can go to that paintball event and make it back. Part of me says, well just call the GI on Monday and see if he'll let you start taking some Budesonide again - that med worked miracles before! Then again, taking a steroid again mentally admits defeat and puts me a step closer to combo therapy. What would you guys be looking to do right now?

I'm glad I finally stepped up and posted on here. Normally I try to stay away because I don't want to think about this, but there will be times when I feel like crud and can't avoid it. I'd rather have this outlet than no outlet at all.

Hope everyone is enjoying their weekend!

-splatkid10
 
Hello and welcome to the forum, I am glad you have decided to join :)

I would say it would be best to let your doc know about these symptoms so if the tum is flaring they can catch it early before things get worse. It may also be worth asking them to check your vitamin levels as people with crohn's can have deficiences in this area and it could explain your need for sleep. Also do you follow any kind of diet now?

Please keep us updated on how things go.

AB
xx
 
Hi Splatkid,
You have quite a story and you have handled things very well.
It looks as if it is time to consult your favorite GI again and find out from him what would be the best treatment route to follow.Monday would be a good day....
Also it would be a good idea to get a full blood analysis such as CBC, Sed rate, CRP, Vit B12 and iron levels among other things.
Good luck with your ambitions and the paintball competition.
Hugs and best wishes
Trysha
 
Thanks for the responses.

It's hard to say about this flare up. This past weekend when I was in Vegas, several people I stayed with had a stomach bug...where they experienced similar symptoms to one of us on a flare! I didn't get sick, but by Wednesday night was feeling a little off and the bowel movements came Thursday. It may just be a bug who knows, and the fact is I'm able to do a lot still right now (still feel alright yknow?). Right now my game plan is to finish off the weekend strong and see how I feel Monday morning. If things have not gotten any better then I will call my local GI and see if I can get a quick visit in.

I had blood work done on 03OCT and my CRP and SED rates were both normal. I was slightly anemic, but that doesn't seem to change much these days. I've had my iron/nutrition panels checked in July and they were good to go (aka normal).

I still believe half this battle is mental - if you think you're sick, you'll be sick (maybe it's a stress thing). So believe you're good to go and you will be...! Hahaha

splatkid10
 
Hi there and welcome :) Thanks for joining and sharing your story.

You asked what I'd be doing if I were you. I'd be on the phone to my doctor and then probably going on total elemental or enteral nutrition until the 29th :) I can tell you're passionate about your sport and I understand that all too well. So I'd be making sure I was able to play.

Again, welcome!
 
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