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  1. #1
    Join Date
    May. 15, 2008
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    1,534

    Default Any Ulcerative Colitis sufferers who ride?

    I was diagnosed last year and just worry so much about riding sometimes that it has taken all of the fun out of it.
    If there are any sufferers out there, how do you deal? How do you ride when you could get struck with a flare symptom at any moment?
    I really want to get back into showing but just riding has been the hardest thing to get past. Let alone the fact that I have a toddler!
    Please...if anyone is out there. Let me know! It would be good to start a support group for Riders with UC!



  2. #2
    Join Date
    Sep. 9, 2009
    Location
    Canada
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    253

    Default

    This wasn't what I expected to read on COTH today! I have UC and I'm going through a flare up right now and have had next to no energy. I've been sleeping about 14 hours a day and have been having problems finding the energy to ride. I also get lots of joint pains, which can make it uncomfortable to ride and often find myself putting the horse liniment on myself.

    Its tough and I don't think there are many solutions except to be careful to manage your stress levels, your sleep patterns, and your diet. I actually find riding can help settle my UC if I'm having a particularly bad day. The riding just seems therapeutic.

    There are times I know I have to respect my limitations and not become stressed over them. Hot water bottles have become a very good friend of mine!



  3. #3
    Join Date
    Mar. 11, 2004
    Location
    Pennsylvania
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    3,296

    Default

    I sympathize, but you may want to put this in the Riders with Disabilities thread.

    There are a lot of knowledgeable people there.



  4. #4
    jse is offline Advanced Premium Member
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    Default

    Ah! I didn't even realize there was a Riders with Disabilities forum!
    How could I have this moved over to there?



  5. #5
    Join Date
    Jan. 4, 2007
    Location
    TX
    Posts
    44,557

    Default

    Quote Originally Posted by jse View Post
    Ah! I didn't even realize there was a Riders with Disabilities forum!
    How could I have this moved over to there?
    If you ask a Monitor to please move it, they are very nice and obliging folks and will do that for you.

    I have a friend with that problem for 30+ years, finally had surgery ten years ago and she said she is a new woman, that life now is so much better.

    Ask your Dr for something to help your quality of life, medications, theraphies, surgery?



  6. #6
    Join Date
    Jan. 2, 2006
    Location
    Dallas, NC
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    2,325

    Default

    My husband has it and it's so bad. His doctor says it's not the worst he's see but it's right up there. It's gotten so bad you know how your intenstines are "lumpy"? His are smooth and stretched out.

    We have a porta potty in the dressing room and sometimes over the years he's had to jump off and run into the woods. It breaks my heart, he gets so embarrassed, I tell him it's just me, I don't care!

    He's no on Cimza now and was helping but not now. He was tried on Remicade but had a VERY bad reaction to it.

    He also has crones and fistulas. He's all torn up, my poor baby.

    He has good days and bad periods. Right now he's in a bad period. Just so weak and fatigued, it's hard to work. Luckily he's self employed and if he can't work it's ok. Well not really ok but he can.
    I want a signature but I have nothing original to say except: "STHU and RIDE!!!

    Wonderful COTHER's I've met: belleellis, stefffic, snkstacres and janedoe726.



  7. #7
    Join Date
    Apr. 10, 2006
    Posts
    7,388

    Default

    Yes....

    My issues started in November 2007 but I was not diagnosed until the following spring. For about 18 months I had a really long run of pretty severe flare-ups that required multiple hospitalizations, and I lost about 50 pounds. Life sucked. It was hard on me, my husband, and my young daughter.

    Riding was the only thing left that felt normal to me, so I kept doing it, even though it could be painful and hard. I often had no energy, no stamina, and had lost most of my muscle mass so I really needed a kind, forgiving mount. I sold the challenging horse I had and found my "dream horse" that I knew would pack my butt around even on the days when I felt like crap.

    I didn't push myself. I tried to do some lessons but wasn't always up to it. If I didn't feel good enough to do more than walk down the lane, then that was all I did. The horse was an absolute rock in my life and I have no doubt the riding and barn time got me through mentally and emotionally.

    Unfortunately, I've since lost that horse and haven't ridden much in the last year. We finally got things under control with the UC in spring of 2009 and then I unexpectedly found out I was pregnant this past fall. Ironically the pregnancy has done wonders for the UC-- I can eat like a totally normal person for the first time several years (and have the weight gain to prove it) and aside from the usual pregnancy complaints, I feel awesome. I've gone off all my UC meds and have had no issues at all. The Perinatologist I see says UC and other GI issues will often go into remission with pregnancy. I'm hoping it stays this way after I deliver.

    Being on the right combo of meds can help significantly but I know the stuff I was sometimes on for pain could really mess up my senses, so riding after taking them was definitely not a good idea!

    Anyway I know staying involved in the horses was really key for me, and it is doable, though not always easy. The trick is getting to know your body and recognizing that you may have to scale things back, though not necessarily give them up.

    Feel free to PM if you want to chat...
    We couldn't all be cowboys, so some of us are clowns.



  8. #8
    jse is offline Advanced Premium Member
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    Default

    It's a terrible disease. I suppose it could be worse but I believe the embarrassment that goes along with it is the worst.
    It's so hard at horse shows because you have to know where the nearest porta potty is and like someone else said you're energy levels are so low that it's really hard to find the motivation to get up there.
    My main goal is to show again, in the jumpers with the instruction of my husband. But with a toddler and this disease I have had such a hard time!



  9. #9
    Join Date
    Nov. 20, 2008
    Location
    PA
    Posts
    2,278

    Talking

    *Using my Mom's account to write in*

    I'm 21 and have suffered with Crohn's Disease since I was 13 (not officially diagnosed until 17 though). I completely sympathize and know what you are going through. I am now on a riding hiatus because I have 2 perianal fistulas that prevent me from being able to ride (even riding at the walk bothers them!) Fortunately I am having a surgery come mid-May and we are hoping it will allow me to be able to ride again
    As for any advice,
    a. never stop taking your meds without speaking with the doctor first (I made that mistake)
    b. don't lose hope and be sure to do whatever makes you happy. I found the key to not letting it beat me is to do something you love whenever you have the strength.
    c. I know this may sound a little strange but my best way of coping is advocating for both diseases. I am trying to educate others and raise money for the CCFA (Crohn's and Colitis Foundation of America). I am even doing a fundraising walk 11 days after my surgery, even if I have to go in a wheelchair. I believe that not letting it get the best of me is what is keeping me going, that and the support of my family.
    d. Remember to stay around people that are positive and understanding, you learn pretty quickly who are your real friends when diagnosed with a debilitating disease.

    I know that there is no cure but I think we are getting close and we just need to remember to take it one day at a time.

    Feel free to PM my Mom and she can pass on the messages (I may have to start my own account lol)

    All the best! Stay strong!


    1 members found this post helpful.

  10. #10
    Join Date
    Oct. 14, 2004
    Location
    Connecticut
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    9,067

    Default

    Quote Originally Posted by jse View Post
    I was diagnosed last year and just worry so much about riding sometimes that it has taken all of the fun out of it.
    If there are any sufferers out there, how do you deal? How do you ride when you could get struck with a flare symptom at any moment?
    I really want to get back into showing but just riding has been the hardest thing to get past. Let alone the fact that I have a toddler!
    Please...if anyone is out there. Let me know! It would be good to start a support group for Riders with UC!
    I was diagnosed in 1984 with it. My father had it, and brother has it.

    Fortunately, I was never struck with the severe symptoms that attack most people and led a fairly normal life.

    Experimenting with what triggers it is also important.
    I use Lactose Free milk, NO chocolate or nuts. Nuts are very irritating to the colon.

    Stress is also a factor. I used to bleed fairly consistently until I went on Paxil several year ago and have been symptom free since, except if I eat the wrong foods.
    Paxil really made a huge difference with my U.C.

    What kind of meds. are you taking for it?
    Having colonoscopies are very important, as there is a slightly higher risk for colon cancer with UC.

    You will also find a lot of different on-line support groups.

    Hugs - I know how frustrated you must be.
    MnToBe Twinkle Star: "Twinkie"
    http://i236.photobucket.com/albums/f...wo/009_17A.jpg

    Proud member of the "Don't rush to kill wildlife" clique!



  11. #11
    Join Date
    Apr. 21, 2010
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    2,610

    Default jse...

    You just stole words from my mind. I have Crohn's, and a toddler. Forget riding - I can barely take care of myself sometimes, and having a toddler on top of it makes any sort of life outside of survival is darn near impossible.

    I just got through having my second bowel surgery about 6 weeks ago, and am just getting the strength to get riding. But 15 min is my max and I'm tired!

    If I do get to show this summer, knowing I have to "go" in the porta-potty while people wait outside of it is really my issue.
    I'd honestly rather bring a portable toilet with me for myself and go in my trailer! Gross but what's the diff?

    Just remember that Lomotil and Immodium are your friend, eat bulky foods and stay hydrated. dont eat gross horse show food!

    Not to get too graphic but I always wear pantyliners on hot days because the friction is awful for me. I want to look into those performance panties too to see if they would help.

    If you can bring along a friend to help I think it makes a world of difference. You're not rushing, you can concentrate on your riding and then your stress isn't as high.

    PM me anytime, us gastro gals gotta stick together!



  12. #12
    Join Date
    Apr. 29, 2006
    Location
    Evansville, Wisconsin
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    3,081

    Default

    Quote Originally Posted by spacytracy View Post
    If I do get to show this summer, knowing I have to "go" in the porta-potty while people wait outside of it is really my issue.
    I'd honestly rather bring a portable toilet with me for myself and go in my trailer! Gross but what's the diff?
    There was actually a thread about that a few months ago. Options for the "trailer potty". I don't remember a whole lot of it, but I know one of the cheapest solutions seemed to be a garbage bag with kitty litter contained in a bucket. And you can get a toilet seat that will fit on a 5-gal bucket so you don't have to perch precariously to poo.



  13. #13
    Join Date
    Sep. 4, 2009
    Location
    NJ
    Posts
    33

    Default

    I was diagnosed with UC in 2005. Less than a year later I broke my pelvis and back in a fall from a horse. It was a bad year. I felt all the things you felt: embarrassment, anxiety, depression, fatigue. On top of that, I was in horrific amounts of pain from the combination of UC arthritis and damage to my spine and hips. When I'm flaring my SI and lumbosacral joints hurt so bad I can't sit or lay down, not to mention the abdominal pain.

    Then one day I decided to just stop caring about it. I was in pain no matter what: walking, standing, sitting, laying down all hurt. So, I said to hell with it. If I'm going to be miserable and in pain no matter what, I might as well choose the venue. It was a real turning point for me. I decided that nothing is allowed to affect my quality of life. I take a change of clothes with me wherever I go, just in case, and I also carry immodium and the anti-spasmodic drug my GI doc prescribed. Once I stopped worrying about it, it stopped controlling my life and I was a lot happier. A happy person copes better than an unhappy one. For me, being a happy person means riding. UC is not allowed to interfere with my riding. UC is not allowed to interfere with my life.

    Don't lose hope. I still train and show my horse. I have a two year old daughter and am due next month with my second child. Some days it's hard, but it's never impossible. You can do this.

    Feel free to PM me. I have lots of coping strategies, but I won't take up space with the gory details. *LOL*


    1 members found this post helpful.

  14. #14
    Join Date
    May. 5, 2010
    Posts
    19

    Default

    This post made me register!As a long time follower,I had to join this discussion.Have had Crohn's for many years and finally had surgery to remove the lg. bowel.My question is ....any riders with ostomies?



  15. #15
    Join Date
    Apr. 21, 2010
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    2,610

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    Elliss - I am glad you joined! I had a temp illeostomy but not permanent. Although, it might end up being an option for me down the road. I don't have too much small bowel to work with anymore and no large whatsoever.

    I would say once your ostomy settles and you can get used to it, I don't see why riding would be much of an issue, except being careful to not bump it, and to know when it might act up. Do they make hard "covers" for it to protect it?



  16. #16
    Join Date
    May. 5, 2010
    Posts
    19

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    Hi st!If it happens don't worry.It has been 5 yrs or so and I do ride.Seems to be fine but I do worry about the fall....Going from aged hunter to 6ish lazy wb.Not something most folks talk about!Also I am 50something..keep them at home and have a difficult time finding a coach to teach a non showing rider!Want to learn and ride.Drs seem to have no problem with riding and ot's have never said anything.Will research covers but thunk it could cause more problems.For colitis patients and those with crohns ,hang in there!



  17. #17
    jse is offline Advanced Premium Member
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    May. 15, 2008
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    Wow! I am so relieved to know that there are other riders out there with this disease. Often times you feel so alone in it.
    I rode yesterday even though I was without a lot of energy and I just pushed through it! It felt so good!
    Thank you everyone who has chimed in, and I wish the best of luck to you guys in dealing with this *crappy* illness!!!



  18. #18
    Join Date
    Apr. 21, 2010
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    Default

    I think we should keep this going.

    My tip of the day? Anti Monkey Butt Powder for riding. Or long distance trips.
    Or times that you just feel like crap.
    Godsend.



  19. #19
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    Sep. 4, 2009
    Location
    NJ
    Posts
    33

    Default

    Ooh, I second the powder! Full seat breeches + summertime temps + sitting trot = Ick! Powder is a life saver. I also find that diaper rash ointment is great for irritation. And I love the travel packs of wet wipes, I keep them in my tack trunk and in the glove box. It's funny, having kids opened up a whole new world of awesome products for myself. I would never have thought to use diaper rash ointment on myself if I hadn't seen how well it worked for my daughter!

    jse- Glad you got to ride. It's amazing how a good ride on a horse can change your whole outlook and just make you feel better. My horses keep me sane (when they aren't driving me crazy)!



  20. #20
    Join Date
    May. 5, 2010
    Posts
    19

    Default

    I discovered that normal saline (from pharmacy-not contact lens product) is very good.Cleans, dries, and toughens the area(s), and is inexpensive!Also a product called Tucks perianal wipes.



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