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New medical condition, anyone else?

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New medical condition, anyone else?

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Old 07-13-18, 09:58 PM
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TBeghtol 
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New medical condition, anyone else?

Had surgery recently to remove a large part of my colon and now have a (hopefully) temporary colostomy.

Any else been there and have some suggestions on continuing to ride with my new friend?
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Old 07-13-18, 10:21 PM
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Empty the bag before going out on a ride?

Perhaps design a custom sprinkler system for those unannounced wheel suckers.
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Old 07-14-18, 07:55 PM
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I had an ileostomy for six months after losing a chunk of my colon to cancer. I started riding after it was reversed, so I can't help with your question about how to address it while trying to ride. Just when I figured out how to deal with the bag, the tape, the glue and all the rest, it was reversed. I as really glad to get it reversed, but getting the colon reconnected was very painful. I started riding then, and I think it saved my life when the colon cancer came back. Here's what I know about having an ostomy bag. The only way to control what comes out is to control what goes in. Your diet really matters. Foods that cause gas are deadly. A low residue diet is helpful. Listen to your doctor - more importantly, listen to the nurses. They're the ones who know how to deal with the day-to-day life with a bag. BTW, I've got a really good ostomy joke it you're interested.
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Old 07-14-18, 08:06 PM
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I can say this ... one of the people I know that rides oodles of double centuries and endurance races has an ostomy. Even if you don't get a reversal ... it shouldn't cramp your style.
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Old 07-14-18, 08:34 PM
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Thank you for the replies.
Definitely a learning experience, and you are spot on about information from Drs. vs Nurses.
As much as I respect my surgeon and the general advice he has given me post-op, the Wound care/Ostomy Nurse was the real source of information.
She took a couple of hours with the wife and myself making sure we had all our questions answered and could take care of both my incision and ostomy.

Diet is still being fine tuned. Some of the things I really enjoyed ( and supposed to be good for you) are out for now. Broccoli cauliflower, cabbage, beans etc don't work out too well. Coffee makes everything run through quickly. I do miss coffee... But other than that avoiding fried foods, limiting red meat, and being conscious of not getting too much fiber I eat pretty normally now 2 months after surgery.

I know of many people doing all the things I formerly did and intend to do again with ostomy.

I would appreciate a good joke, as I have a penchant for finding humor in just about any situation.
(Got me in trouble a couple of times while in an Air Force hospital and being my usual irreverent Army self.)

Thanks again,

Tim
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Old 07-15-18, 09:41 AM
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Your best friend is now the ostomy nurse. Send her flowers and chocolates.

FODMAPS diet will reduce the gas.

The most common error I see is failure of ostomy patients to keep up with their fluids in summertime. I’ve seen ostomy patients go into renal failure from long motorcycle rides in the middle of July.

Don’t lose heart. I remember an rather elderly lady who was a cyclist diagnosed with colon cancer, went through the operation and received chemotherapy. I saw her on a club ride 6 months later. We chatted, the ride started, and I waved at her backside as she sped off into the distance. Holding her wheel was not an option for me, she was too dang fast.
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Old 07-15-18, 11:56 AM
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Here's my ostomy joke. I got this from my mother, who got it from a friend who'd had a colostomy for many years. She said she had named her ostomy bag after her ex-husband, because they're both full of s**t. You can modify the joke as appropriate. If I had an ostomy bag now, I'd name it after Donald Trump.
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Old 07-15-18, 06:24 PM
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+1 the ostomy/wound care nurse will be an excellent resource. I've dealt with many an ostomy during my career as an RN, but never had one myself.

As an aside, whenever I see teenagers with their brand-name "Hollister" apparel, I always think of ostomy supplies.
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Old 07-15-18, 06:28 PM
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Originally Posted by JohnDThompson View Post
+1 the ostomy/wound care nurse will be an excellent resource. I've dealt with many an ostomy during my career as an RN, but never had one myself.

As an aside, whenever I see teenagers with their brand-name "Hollister" apparel, I always think of ostomy supplies.
Ha, now when I see those folks I will, too!
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Old 07-29-18, 08:35 AM
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So....Just hit the 90 day mark since surgery. Dr visit last week blessed off on bicycling etc "as tolerated".
In anticipation I have both my bikes all tuned up and ready for test rides.
Got my first pair of bibs and it looks like they will stabilize the bag while riding.
My incision from surgery (bikini line to sternum) is almost healed except for about a one inch section at top that is taking a while.
Will have to be careful until that heals up.

Going to have to be conscious of hydration in the Las Vegas heat and load up evening prior to early morning rides.
Will have to experiment with pre-ride nutrition (or wait until after ride) as it definitely affects output to bag.
Best window for temps is from sunrise around 0515 until around 0800 when it hits mid 90s.
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Old 09-05-18, 11:34 AM
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Originally Posted by TBeghtol View Post
So....Just hit the 90 day mark since surgery. Dr visit last week blessed off on bicycling etc "as tolerated".
In anticipation I have both my bikes all tuned up and ready for test rides.
Got my first pair of bibs and it looks like they will stabilize the bag while riding.
My incision from surgery (bikini line to sternum) is almost healed except for about a one inch section at top that is taking a while.
Will have to be careful until that heals up.

Going to have to be conscious of hydration in the Las Vegas heat and load up evening prior to early morning rides.
Will have to experiment with pre-ride nutrition (or wait until after ride) as it definitely affects output to bag.
Best window for temps is from sunrise around 0515 until around 0800 when it hits mid 90s.
Fellow ostomate here. Been riding for about five years, seriously for the past three. Diagnosed with ulcerative colitis as a teen, first of five surgeries at age 27, now 52 with a permanent ileostomy.

My ileostomy is a life saver. Plain and simple, I'm living a better life at 52 than I did the first 30-40 years of my life. Diet and fluids are always an issue... as you go along, you will find what works for you. I currently use Drip-Drops (over the counter, oral rehydration solution) on long rides (30+ miles). Managed my first two centuries this season, shooting for 2500 miles by year's end. If you ever want to chat, send me a pm.

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Old 09-05-18, 12:58 PM
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I need to schedule that Colonoscopy and quit putting it off. My grandfather died from colon cancer and refused to get a Colonoscopy years prior.
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Old 09-05-18, 04:08 PM
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SKIDAD thanks for the encouragement and sharing your story. I too am finding a better quality of life now that a lot of my symptoms from "before" are gone. Had been living with such digestive distress for so long I did not know it was not "normal". I am up to 2 or 3 30 minute rides a week now that the weather is getting a little cooler. Been fine tuning some bike fit stuff and making some upgrades to tires, etc. My next short term goal is hour on the bike. Hope to be there by end of Sep or so. Beyond that we will take it as it comes.

HONDO just get the colonoscopy done. I waited until my Dr insisted even though I highly suspected I had some issues that needed to be addresses. The procedure is not a big deal, the prep is kind of unpleasant day before. Please don't put it off.

To everyone else who has commented thank you again for the encouragement and information.
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Old 09-05-18, 08:48 PM
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Yes Sir I will definitely quit putting it off my foot is in a cast but that is no excuse I have a routine doctor appointment in a few days and I am scheduling the colonoscopy. I hit 50 so now is the time and none of that BS wait until you are 51.
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Old 09-05-18, 09:20 PM
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Surgeons have no clue about ostomy appliances, and there’s no way they could afford to take the time necessary to teach you the ins and outs of your stoma, even if they knew what to tell you. It would be a waste of their time and training since it’s something that can be taught effectively by someone with far less training/education, far more interest, and far more time. Wound care/ostomy nurses are generally an excellent resource and will universally be more informed and interested than your surgeon. Surgeons created the field of WOC nursing because they recognized years ago that those nursing specialists could do the job far more effectively than they could.

Glad you’re recovering well. I had a colon resection myself last year but colostomy wasn’t necessary. I was in the hospital for a couple of days after surgery but was able to get back on my road bike a couple of days after discharge. I agree...colonoscopy is no big deal, depending on the doctor, the type of anesthesia, and the type of gas they use for inflating the colon. An experienced surgeon or gastroenterologist, a little propofol, and carbon dioxide for inflation...it will be completely painless and you’ll be none the worse wear about an hour after discharge.

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Old 09-05-18, 10:13 PM
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Originally Posted by TBeghtol View Post
So....Just hit the 90 day mark since surgery. Dr visit last week blessed off on bicycling etc "as tolerated".
In anticipation I have both my bikes all tuned up and ready for test rides.
Got my first pair of bibs and it looks like they will stabilize the bag while riding.
My incision from surgery (bikini line to sternum) is almost healed except for about a one inch section at top that is taking a while.
Will have to be careful until that heals up.

Going to have to be conscious of hydration in the Las Vegas heat and load up evening prior to early morning rides.
Will have to experiment with pre-ride nutrition (or wait until after ride) as it definitely affects output to bag.
Best window for temps is from sunrise around 0515 until around 0800 when it hits mid 90s.
You might also want to ask your health care practitioners about applying fasting (IF). It has so many benefits not the least among them is improving gastrointestinal health.
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Old 09-06-18, 08:54 AM
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Originally Posted by Hondo Gravel View Post
Yes Sir I will definitely quit putting it off my foot is in a cast but that is no excuse I have a routine doctor appointment in a few days and I am scheduling the colonoscopy. I hit 50 so now is the time and none of that BS wait until you are 51.
The new recommendation is 45 ... and that is for people without a family history.

I've had at least 2 colonoscopies, and the worst part is the fasting. The rest is really no big deal. They also now have DNA stool tests that can be used instead with a lot of patients.

Colon cancer is one of the big 3 cancers (breast and lung are the others). It kills a lot of people. And unlike breast and definitely lung cancer, screening is very effective and only need be done every 5-10 years. Colonoscopy? Get'er done.
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Old 09-06-18, 10:34 AM
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Progress....

Again, thanks to all that are contributing to this thread.

Yes, current recommendation is for initial screening at 45. Don't know if it would have changed my current outcome to have been screened at 45 vs 50. My symptoms really got my attention after my last tour in Afghanistan 2011 right before I turned 50. Combination of diet, stress, etc. seemed to exacerbate condition.


Progress report: I am working on getting in 3 or 4 half hour rides per week now that weather is cooling off somewhat. Getting a handle on what to eat night before but really all part of figuring out general nutrition/diet stuff. Current short rides I am fine with not eating before, and often not hungry until 3 or 4 hours after. Hydration ok. Biggest thing has been just being conscious of hydration ALL of the time, not just for riding.

Taking a few days off from work next week. Wife wants to go to Sedona AZ so will be there Wednesday through Saturday. Probably go over to Jerome and see the sights. Thinking about taking the bike so as to continue current ride schedule. (She sleeps in most mornings so won't intrude on our activities together...)

Going to Big Bear CA third week of October. Eight days of hanging out enjoying the trees and water. Big goal is to ride around the lake. I know it is not very far, only about 17 miles but still a very significant distance for me having been off the bike last ten years or so.

Things I have noticed on my return to cycling:

Bike shops are much different now. A few good ones here in Las Vegas still with a good vibe even if you aren't dropping $5K on a new bike. Related note, even though I seem to be a minority I still prefer rim brakes and mechanical shifting for my bikes even though that seems to be getting less common.

Wider wheels and tires are much more comfortable. "Back in the day" I bought into the whole skinny tires at 120 psi etc. Wow a 28mm tire on a 23mm wide rim measures out to almost 30mm! I am loving the ride.

I am dusting off an older Ibis Hakkalugi CX carbon frame and considering how to configure. It is one of their earlier carbon frames and still has 130mm rear spacing. Hooray! I have great wheels for it already. Going with a wider rim it will take up to about 40mm tires as long as they don't have too crazy side knobs. Going to make a great "all other road" bike.

Available parts (shifters, derailleurs, brakes both conventional and cantilever) seem to have all gotten much nicer. My last standard was 7800 Dura Ace and 6700 Ultegra. Wow newer IS nicer!

Thanks for listening to my ramble. I appreciate the interaction and support I have found here. When I get more capable and comfortable I will seek out some local groups to get back into a little social riding.

All the best,

Tim Beghtol
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Old 09-06-18, 11:16 AM
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I was in Sedona last March I was searching for a vortex on the way up to Jerome visit the Douglas Mansion which is a state park it is awesome. Jerome is interesting and the view is great. Have a good time.
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Old 09-06-18, 09:13 PM
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Originally Posted by TBeghtol View Post
Again, thanks to all that are contributing to this thread.

Yes, current recommendation is for initial screening at 45. Don't know if it would have changed my current outcome to have been screened at 45 vs 50. My symptoms really got my attention after my last tour in Afghanistan 2011 right before I turned 50. Combination of diet, stress, etc. seemed to exacerbate condition.
Of the 4 organizations that issue guidelines for colon cancers screening, the American Cancer Society is the only one that recommends screening at age 45. The rest still recommend starting at age 50, including the govtís USPSTF. The ACS data and rationale for screening at 45 is pretty good, but note that itís rare that any insurance company will cover colon cancer screening earlier than age 50.
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Old 09-07-18, 06:31 AM
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I had a foot takin out of my colon in Dec. of 98, 2 years before retirement. When I had to go to the bathroom, I had to find somewhere fast. That only lasted a few months though. Everything was pretty much back to normal after that. Not sure I would want to ride with the bag though.
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Old 09-07-18, 01:06 PM
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Riding with a colostomy is not big deal...activity restrictions are more related to the way the operation was done. If it was done the old-fashioned way through a lower-midline incision then yes...activity restriction, like riding a bike, for 4-6 weeks is generally recommended . If it was done laparoscopically (minimally invasive surgery) then return to physical activity can happen much sooner.

One potential complication of a colostomy or ileostomy is hernia. The hole in the muscle wall will always be a weak spot. The incidence of parastomal hernia (bowel herniating through the muscle wall next to the stoma) is about 35%. Strenuous physical activity, like riding a bike, generally increases that risk.
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Old 09-07-18, 01:15 PM
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MIne started with laparoscopic surgery, then 5 days later had emergency full monte midline surgery due to separation of joined section. Also ended up with the colostomy from that surgery.
Dealing with a parastomal hernia now. Kind of disconcerting...not really painful just uncomfortable. Surgeon says I can keep riding just be reasonable about it. Plans to repair hernia when colostomy gets reversed either late this year or early next year.

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Old 09-07-18, 07:13 PM
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Originally Posted by TBeghtol View Post
MIne started with laparoscopic surgery, then 5 days later had emergency full monte midline surgery due to separation of joined section. Also ended up with the colostomy from that surgery.
Dealing with a parastomal hernia now. Kind of disconcerting...not really painful just uncomfortable. Surgeon says I can keep riding just be reasonable about it. Plans to repair hernia when colostomy gets reversed either late this year or early next year.
Ah. That makes sense. I'm sorry you went through that. It's an occasional complication that goes along with any colon resection, especially in the sigmoid portion of the colon. I hope you're recovery going forward is uneventful. Odds are good that it will be.
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Old 09-10-18, 08:23 AM
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Originally Posted by Cuyuna View Post
Ah. That makes sense. I'm sorry you went through that. It's an occasional complication that goes along with any colon resection, especially in the sigmoid portion of the colon. I hope you're recovery going forward is uneventful. Odds are good that it will be.
All of my surgeries have been midline incisions. I have had two peristomal hernias... my abdomen is swiss cheese due to all the surgeries. I currently have a peristomal hernia and I wear a hernia belt made by nu-hope (CA I believe). Doesn't impact my riding at all. Again, I'm more upright (spend little time in the drops) so no issues there. I wear the Coloplast Sensura Mio two-piece, allows me to rotate the pouch "horizontal" during the ride vs. vertical. As my ileo is not very active while riding, I have not experienced any blow outs/tunneling with this setup (I route the appliance along the side of my abdomen vs "pinching" it off at my waist (bike shorts are completely below my appliance).
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