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  1. #26
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    UC almost killed me last year at age 25. Had a bag for 6 months and hated it, but I was able to ride. I wore a nu hope belt to hold it tight against me and phoenix belt over that to hold the bag. I was able to do jumps and ride technical XC without much trouble. I was also able to do motocross style riding on my quad with this setup. It worked very well for me.

  2. #27
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    Quote Originally Posted by coke View Post
    UC almost killed me last year at age 25. Had a bag for 6 months and hated it, but I was able to ride. I wore a nu hope belt to hold it tight against me and phoenix belt over that to hold the bag. I was able to do jumps and ride technical XC without much trouble. I was also able to do motocross style riding on my quad with this setup. It worked very well for me.
    Are you J-Pouching it now days?

    I potentially have that option but it would require two more surgeries that right now I don't want to deal with. The bag doesn't actually bother me that much but I know it's all a personal choice.

  3. #28
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    Quote Originally Posted by mtnbiker72 View Post
    Are you J-Pouching it now days?

    I potentially have that option but it would require two more surgeries that right now I don't want to deal with. The bag doesn't actually bother me that much but I know it's all a personal choice.
    Yes. Having some pouchitis, but for me I much prefer this over the bag. Almost feel normal again.

  4. #29
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    Just curious, for those on here affected by Ulcerative Colitis, did you at first mistaken it for IBS? For the past 6-7 years I've be putting up with what I assume is IBS but this thread got me google searching and now I'm starting to wonder =/
    "Single track is for pansies!
    I blast down a mountain once, and in my wake, lies a new single track for the rest of you."-sm

  5. #30
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    Quote Originally Posted by KVW View Post
    Just curious, for those on here affected by Ulcerative Colitis, did you at first mistaken it for IBS? For the past 6-7 years I've be putting up with what I assume is IBS but this thread got me google searching and now I'm starting to wonder =/
    My "general" doctor diagnosed me with hemoroids

    It was only after symptoms got really bad six months later that I saw a specialist and had a colonoscopy which diagnosed me with UC.

    I would highly recommend seeing a specialist, UC and Chrons is no joke.

  6. #31
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    Quote Originally Posted by coke View Post
    Yes. Having some pouchitis, but for me I much prefer this over the bag. Almost feel normal again.
    I fought pouchitis off and on after my BCIR. I kept getting on a antibiotics once every couple months to take care of it until I finally broke down and started eating one Activia yogurt everyday. Seriously. It sounds silly but the stuff works! Eat one a day if you're having pouchitis issues and once you're fine, one every couple days is good enough. Haven't been on antibiotics for over three years now

  7. #32
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    Update, I have had a re-occurrence of UC in the small part of my Colon that was left behind (referred to as a stump). So my riding the last couple months has been limited to shorter rides, mostly with my 6 year old. I'm going in for surgery on Monday to get the final part out. This will be permanent, no chance of a J-Pouch but also should end any UC issues forever. I'm ok with the bag most of the time so if I can get this done and get healthy (about 6 week recovery) for summer then I will be a happy camper!

  8. #33
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    Mtnbiker72. Good luck- you are an inspiration. You advised me years ago to keep my late 90's rockhopper which I now still ride every day. Thx for that.

  9. #34
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    Hang in there. Sucks that you are having to go through another procedure. At least, as you stated, you won't have to revisit this issue after things are done. Keep riding.

  10. #35
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    All the best for a speedy recovery. I also have UC diagnosed 1988, thankfully controlled by olsalazine. You are an inspiration, knowing that even after everything, you still have the passion for riding and planning to get back out there.

    Ride on.

    C

  11. #36
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    Three weeks into recovery and things are going pretty good, had an infection that put me back in the hospital for a few days last week. But that has been cleared up and I'm recovering well. I can't wait to get back on the bike. Plus my son's birthday is coming up and I got him a 20" mountain bike so he can really start trail riding with me.

    In the meantime I got a junker bike project to work on. I got a 1997 Bianchi Ocelot for free, it needs a fork, seatpost, saddle, and tires. I plan on rebuilding it to a full rigid commuter and selling it on Craigslist. Something to keep me busy till I can ride in a few weeks.

  12. #37
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    I'm back riding...went on a road ride yesterday and while I am out of shape (on the climbs) and my technique is a bit rusty (on the descents) it feels great. Can't wait to get back on the mountain bike.



    That's me in the Sugoi jersey

  13. #38
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    Great to see you are back on the bike and feeling healthy.

    I battled UC for almost ten years. The prednisone nearly killed me in the latter years. Had my colon removed in 2000 and have been J-pouching it ever since. Tried to keep biking and skiing through all the surgerys. Even went skiing between the removal and take-down. Wore suspenders a lot during those 12 weeks with the bag.

    I have not looked into any of the recent advancements in ostomy technology but it would be cool if it could be setup remotely. I would be worried about your knees hitting the bag when pedaling. Is that an issue for you?

    Stay healthy and hydrated.

    BTW, on the plus side, you never have to worry about high cholesterol again.
    Last edited by likeaboss; 07-27-2012 at 06:30 AM.

  14. #39
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    Quote Originally Posted by treilley View Post
    I have not looked into any of the recent advancements in ostomy technology but it would be cool if it could be setup remotely. I would be worried about your knees hitting the bag when pedaling. Is that an issue for you?

    Stay healthy and hydrated.

    BTW, on the plus side, you never have to worry about high cholesterol again.
    I use bib shorts and for MTB an Ostomy Armor device which keeps things tucked away and protected. Since the bag is firmley pressed against my waist and thigh there is no issues with hitting my leg. I managed to lug around my 29# singlespeed this week and only walked one steep hill because I lost traction. Then did a road ride the next day. Here is a poor cell phone pic of me, you wouldn't even know I had an ileostomy if you saw me on the trail.


  15. #40
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    New name, same guy

    Got another great single speed ride in and didn't have to walk any of the hills. It felt great, so great I went out and ate something I shouldn't have.

    Dobt...I got a blockage that took all night to clear!!! Man, the physical pain was terrible but the emotional pain almost took me down. Serious flashbacks from last summer dying in the hospital. I'm bruised and battered on the inside but I'm OK and ready for another ride this week.
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  16. #41
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    I was checking out ostomy armors earlier today and decided to have a look here as well. I have Crohn's Disease and am in a pretty rough spot right now, trying that new Tysabiri Esque medicine called Vedolizumab that was just approved a few weeks ago or we are going through with a full removal of the large intestine. I just want to ride and race again, I am a former Cat 2 Delaware state champion in xc, quickly rising and should have been racing 1 by all good measure. Alas the crohns kept me to a few races year at best. I've followed some of you blog the past few years Bike Whisperer. I dont understand the stigma of mtbers rocking lycra on the trails? I'm more embarrassed at the thought of triathlon training and swimming all those miles a week at the YMCA rather than wearing bibs! But hey suppose its just the racer in my blood.

    I was wondering how is everything holding up? I had known about the ostomy armor from previous searches but the other links look pretty cool too. These companies really do a hell of a great job at protection and concealment.

    Not as daunting, Now that it's a toss of the coin to become a reality. You should check out Well Apps "GI Monitor" on your phone or the computer, I have it and have met some wonderful people via the app- It would be great to have another member that rides on there!

    Anyhow,
    Hope all is well
    Justin

  17. #42
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    Quote Originally Posted by mmountainbiker View Post
    use your camel...err poopback
    You, are a clown.

  18. #43
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    I am just now feeling myself again after the better part of 4 years of surgeries/recoveries, the last one being 20 months ago. The first was a shoulder repair followed by 3 abdominal surgeries. I had diverticulosis and one of the diverticula ruptured resulting in removal of 12" of my sigmoid colon and 5 months with an ostomy bag. The bag wasn't as bad as I thought it would be, except when "it" would fart loudly in public (and I'd crack up laughing-what else could I do?) but I was glad to get rid of it. The colostomy takedown (isn't that a wrestling move?) got infected and that meant 6 months of visits to a wound specialist and eventually an incisional hernia and another surgery to repair that. I now have a 150x200mm biological mesh holding my guts in (I hope) .

    I did ride throughout it all but couldn't ride much off road as the bouncing was too unpleasant. I still need to wear a motorcycle kidney belt for longer rides to avoid discomfort, but it seems to be getting better with time. My average speeds are back to where they were pre-surgeries, and with a new and improved outlook on life I am more pumped than ever to keep going. My biggest fear is of another incisional hernia.

    How do you guys who have had similar surgeries feel when riding? Any danger of hernias?

    Glad you're still at it!

  19. #44
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    Edit...
    Last edited by Barman1; 07-07-2014 at 05:39 PM. Reason: TMI

  20. #45
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    Quote Originally Posted by EightySixed View Post
    I was checking out ostomy armors earlier today and decided to have a look here as well. I have Crohn's Disease and am in a pretty rough spot right now, trying that new Tysabiri Esque medicine called Vedolizumab that was just approved a few weeks ago or we are going through with a full removal of the large intestine. I just want to ride and race again, I am a former Cat 2 Delaware state champion in xc, quickly rising and should have been racing 1 by all good measure. Alas the crohns kept me to a few races year at best. I've followed some of you blog the past few years Bike Whisperer. I dont understand the stigma of mtbers rocking lycra on the trails? I'm more embarrassed at the thought of triathlon training and swimming all those miles a week at the YMCA rather than wearing bibs! But hey suppose its just the racer in my blood.

    I was wondering how is everything holding up? I had known about the ostomy armor from previous searches but the other links look pretty cool too. These companies really do a hell of a great job at protection and concealment.

    Not as daunting, Now that it's a toss of the coin to become a reality. You should check out Well Apps "GI Monitor" on your phone or the computer, I have it and have met some wonderful people via the app- It would be great to have another member that rides on there!

    Anyhow,
    Hope all is well
    Justin
    Well I ended up with two new hips this winter (double replacement) due to Avascular Necrosis. This was caused by the heavy Prednesone use that my doctors prescribed to me while I was fighting UC. So I am again, for the third time in as many years, recovering from major surgery. I have been riding some, but at under six months since the surgery I am still struggling a bit. It sucks because I know I need to ride more for fitness and yet I have to take things slow.

    You don't know how strong you really are, until being strong is your only choice.

    Keep up the good fight
    -Aaron
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  21. #46
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    Dude, you're an inspiration. If you ever find yourself in New England, I'd be honored to ride with you.
    Misfit diSSent ALC SS
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  22. #47
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    Hey fellas, little update;

    I have what is described as "severe" Crohn's disease that has only affected my colon (as far.) I ran out of medicinal options having failed all the heavy hitters (immunomodulators, chemo drugs, biologics ect.) it's been a nightmare. From cat 2 DE A/G champ two years running when I was just getting fit, to unable to ride at all save for a few meandering pedals here an there.

    I am scheduled for September 10th to have a complete removal of colon and a permanent ileostomy fitted. Just ran out of time for emerging medicines, I can't wait anymore! It'll be a tough recovery, but this dreadful disease is tough too!

    I'm looking forward to getting advice and learning to adapt to my appliance, and finally getting back on the bike! I even had my XC race rig painted purple for Crohns an Colitis awareness this past winter! Can't wait to get riding regularly, have but a few rides on the setup so far.
    Fwiw.
    Scandium Voodoo Aizan custom paint
    Reba RLT
    CK headset
    Thompson stem/seatpost
    Enve flat bar
    Handbuilt DT 240's/DT SuperComp spokes to Mavic TN719 tubeless
    WolfTooth D/S 32t up front mate to a (poorly done by me) Jones XTR M960 Crank
    XT 785 elsewhere
    Fizik Aliante saddle/ESI grips and Conti Rubber

    First couple rides were sweet. I'll post a pic if someone wants.

    Can't wait to be amongst Whisperer, Rollin' With No Colon!
    Next chapter of life, Onward!

    Until next time my friends. Ride Hard!

  23. #48
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    Quote Originally Posted by EightySixed View Post
    Hey fellas, little update;

    I have what is described as "severe" Crohn's disease that has only affected my colon (as far.) I ran out of medicinal options having failed all the heavy hitters (immunomodulators, chemo drugs, biologics ect.) it's been a nightmare. From cat 2 DE A/G champ two years running when I was just getting fit, to unable to ride at all save for a few meandering pedals here an there.

    I am scheduled for September 10th to have a complete removal of colon and a permanent ileostomy fitted. Just ran out of time for emerging medicines, I can't wait anymore! It'll be a tough recovery, but this dreadful disease is tough too!

    I'm looking forward to getting advice and learning to adapt to my appliance, and finally getting back on the bike! I even had my XC race rig painted purple for Crohns an Colitis awareness this past winter! Can't wait to get riding regularly, have but a few rides on the setup so far.
    Fwiw.
    Scandium Voodoo Aizan custom paint
    Reba RLT
    CK headset
    Thompson stem/seatpost
    Enve flat bar
    Handbuilt DT 240's/DT SuperComp spokes to Mavic TN719 tubeless
    WolfTooth D/S 32t up front mate to a (poorly done by me) Jones XTR M960 Crank
    XT 785 elsewhere
    Fizik Aliante saddle/ESI grips and Conti Rubber

    First couple rides were sweet. I'll post a pic if someone wants.

    Can't wait to be amongst Whisperer, Rollin' With No Colon!
    Next chapter of life, Onward!

    Until next time my friends. Ride Hard!
    I know there is a lot of fear with such a big change, but not needing to use the toilet 12x a day makes life a lot easier. Wraps and bib shorts are my method for most rides, Ostomy Armor for rides where I am concerned about crashing.

    It's not all flowers and sunshine, but I have been able to keep a full-time job and do most activities with an ostomy. Now having my hips replaced this winter has been a little harder to recover from but I am getting there.

    Good luck and keep on rolling!
    Origin 8 Scout 29
    Rodriquez Adventure

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