Hi,

I’ve chatted with Michael Mauti, he’s a line backer for the New Orleans Saints, he’s got a jpouch. Here’s a link to read about him. Hope this helps some.

https://www.nola.com/sports/sa...09-f40ab0b18687.html

He’s also on Instagram

Quite a few J-pouchers on here have done strenuous or extensive exercises and they have suffered: bowel twists, blockages, hernias, among other things. The major problem I heard recently was from a guy playing basketball and his J-pouch popped. Everyone that has a pouch/ostomy needs to be extra careful and avoid: strenuous, extensive, and weightlifting exercises; a lot of people on here chance things anyway, some of them never get hurt or suffer consequences, but a lot of them do suffer consequences. I think you guys need to ask yourself is it worth the risk? My personal opinion is that its not worth it.

Getting my J-pouch enabled me to take up a strenuous martial art. Basketball and baseball in particular should be fine, but it’s always worth asking the surgeon directly.

A “popping” j-pouch ?!? Definitely an urban legend... as Scott suggests, your surgeon is the best source for accurate information. Your son need not be discouraged from getting a j-pouch because of some dubious urban legend circulating on this forum.

Lauren,

Please refrain from giving advice when the original poster is asking for EXPERIENCE, not opinion. “I heard of a guy” is NOT experience. It is rumor. Bowel twists and hernias occur regardless of exercise/athetics.

Unless you want to back up your statements with evidence, do not make these declarative statements. It not not scares people unnecessarily, it spreads disinformation. Ending your reply with stating it your opinion is not enough to undo the prior incorrect remarks.

Jan

I am a long term jpoucher and played (somewhat) competitive sports with a jpouch even into my 50s. I tore my calf muscle playing volleyball which ended my competitive sports days. I still ride bicycle, weight train, yoga, tai chi and walk for exercise and the jpouch hasn’t been an issue for me.  

Ytcrockpot, very good article about Michael Mauti.  I read further about him.  He eventually left pro-football and it looks like he is currently involved in working in the area of helping people cope with IBD issues and cannabis/medical marijuana.  

It’s interesting the number of people in competitive athletics who are dealing with IBD, j-pouches or ostomies.  I enjoy hiking, biking and taking long walks, hopefully will snowshoe this winter, but not really fond of the cold.  I did do some hikes with my ostomy and hiked Mt Washington with my j-pouch.  I think my biggest issue has been making sure I empty my pouch and take Lomotil if I don’t have access to a bathroom.  

I agree with you, Scott.  The best person to ask is your surgeon as to what sports may be best to participate in.

Jake Diekman is a Major League Baseball pitcher who currently pitches for the Oakland As and got his J Pouch a few years ago when he was pitching for the Texas Rangers. Here is his story:

https://www.google.com/amp/s/s...field-151320344.html

He was a highly effective relief pitcher for the Oakland As with his J Pouch, with ERA of 0.42, WHIP under 1 and 8 hits in 21.2 innings in the Covid shortened 2020 baseball season.

I've talked to several people who are play sports with a jpouch. Talk to your surgeon and see what he says. My surgeon told me I'm fine to go back to lifting weights and enjoying sports after I'm totally healed. I think the biggest thing is to listen to your body.

Assuming he goes through with it and gets the best results and he heals up well, my concern is the ability to for the j pouch to hold the contents in during a soccer or basketball  game.  Has anyone had trouble with accidents while running or jumping?  Also, if there is an urgency to go, on average how much time do you need how much control do jpouches offer usually?  Thanks

CSSunshine: I sent you a private message

Continence during activity is a very individual thing. But, mostly it is a matter of time and patience while the pouch adapts and he gets used to what his own personal tolerances are. The hardest thing, for me, was being patient, as it can take a year or more before you get to your best reliable function. He will learn what to eat and drink to improve continence and whether he needs bowel slowers long term. There have been a great many here who resumed very active sporting lives. The main thing is, you just can’t know for sure until you are there. As you know by now, everything surrounding IBD is unpredictable. But, being young is a plus!

Jan

@CSSunshine A healthy J pouch should eliminate urgency, leaving plenty of time for bathroom management. I’ve only had leakage when I’ve had active pouchitis. As Jan described above, each person takes time to adapt to their new plumbing.

As already mentioned, you'll need time for your body to heal after surgery and for your pouch (and you) to adjust.

That being said, I was an exerciser before j pouch surgery and continued after surgery. (I am not an athlete by any stretch for the imagination. I am a  power walker in warmer weather, and use a recumbent bike inside this winter. I don't run, not because of my pouch, but because I'm not a runner.) Needless to say, start slow with walking or using an exercise machine in the house. (I did this to be near the bathroom in case I had to go in a hurry.) After I felt I was doing okay in the house with exercise, I expanded to short walks outside where there were places I knew I could stop and use the bathroom if needed. This helped me build up strength and endurance. I continued to build up from there.

I'm fourteen years from my surgery.  I now walk four miles outside or ride my recumbent for an hour. I don't usually have to use the bathroom unless I didn't go before I started, or drank way too much water before heading out. You will not need to wait fourteen years to get back into the swing of things

Start slow doing what you love and remember you're headed for the long haul.  Don't try to get back into everything right away, but also don't be afraid to get out there and try.  Get some people around you who understand your situation and understand if in the beginning you need to use the bathroom more. No, you're not going to be doing this right after surgery, and maybe not anything heavy for the first year, but as you gradually build up strength again, you'll know more what will and what won't work for you.

Wishing you the very best!

Here's a question but you said your boy is already in highschool correct? I'm 1 month out from my takedown surgery and I plan on getting back into working out after the new year. I just had my 1 month follow up appointment with my surgeon today and they cleared me to start working out again. I say all that to say this. If your son is already in highschool and playing sports at a high level he may want to consider waiting to graduate. Not because he can't play sports with a jpouch but because he may have to miss sports after he has surgery and is recovering. I'm no expert but I can imagine it would take a while to get to a point where he could play super intense sports at a high level. When I say I'm going to start working out I mean I'm going to slowly ease into it. Not jump into a full court basketball game lol. I'm not saying he can't do it because he's young and we recover a lot faster with youth on our side. I'm just looking at it like how long will he be out before he's ready to get back on the field. Highschool goes by fast enough let alone if he has to miss a season of something to get this surgery. But I guess it all depends how bad he wants to get it done

I agree with the thought above, but clearly a personal decision and you/he should do what you think is best. I had an ileostomy in high school and played competitive tennis. I took a gap year between high school and college in order to have my J Pouch surgery and recover before freshman year - it worked really well for me as I didn’t miss any sports and was 100% before going to college....and the extra year to mature didn’t hurt!  I just turned 50 this year and while I deal with pouchitis, I have no restrictions when it comes to athletics. I work out every day - crossfit, tennis, boot camp, weights, etc. I don’t have any restrictions other than bad knees which is hereditary. It’s how I keep my sanity.

Thank you! Yes he is a freshman in high school. Currently the plan is for him to have one surgery in March, then the second surgery in May and begin sports again in September.  He is very strong, healthy and we expect him to recover quickly.  About how long should he expect to be able to heal to the point of being able to control his bowel movements.  And di things like Imodium on game days help?  We are scheduled at Johns Hopkins and our surgeon seems very confident.  I’m just very apprehensive to rock the boat and change anything.  Prior to his colectomy it was a nightmare of medicine and bathroom visits.   About how often does pouchitis happen? Thank you All again for your help!

@CSSunshine For many folks bowel control is more or less immediate after the final surgery (it was for me). It can take a while to get the number of bathroom trips down to an easily manageable level (usually 4-6 per day). Some people never get pouchitis, some more frequently, and some are stuck with it continuously. For most the treatments are remarkably effective. Symptoms tend to disappear after the first dose to two of Cipro, for example.  

Continence was excellent for me as well after takedown, but I closely followed the "military-like" written instructions by my surgeon, which included daily kegel exercises of the anal sphincter muscle and, importantly, suppressing the urge to defecate as long as possible, so as to stretch out the J Pouch, increase its storage capacity, and simultaneously reduce the number of daily bowel movements (which could be anywhere in the 4-8 range daily, if all goes well).

Like Scott said, pouchitis is an unknown variable.  But IF it happens, in many cases (such as my own) it's very treatable and only impacts on continence when it's not being effectively treated.  I have lived with some level of chronic inflammation in my Pouch for well over 25 years now.  It has been effectively "kept in check" and in a "simmering" state with various meds, and does not impact on my quality of life or ability to engage in athletics, which in my case primarily consists of biking.  While that may not be the ideal outcome, the most important thing is that ulcerative colitis was completely untreatable and unmanageable for me, whereas pouchitis/Crohn's is/was treatable and manageable, so I "traded up" in inflammatory bowel diseases by having J Pouch surgery.

Regarding Imodium, its operative ingredient loperamide acts in a way that is inconsistent with peak athletic performance. I would not use it before any athletic competition or "on game day."  It can cause sleepiness or drowsiness and tends to diminish alertness, although not to the extent of opiod meds that work in a similar fashion.

@CSSunshine wrote “Currently the plan is for him to have one surgery in March, then the second surgery in May and begin sports again in September.”

It might be better not to make plans on recovery timeline beforehand, in order to avoid disappointment or the risk of exerting himself too early. I am currently 9 months post reversal, although I exercise everyday, I am no athlete. I believe he should not be put in a social context that would put peer pressure on him to perform athletically, such as team training or a game, before one year. The j-pouch surgery is a major abdominal surgery.

Has anyone heard of abdominal colectomy where they attach the small intestine to the rectum after a a colectomy?  We are approaching my sons surgery date soon and I want to make sure I’ve challenged all of the options. Thanks

@CSSunshine posted:

Has anyone heard of abdominal colectomy where they attach the small intestine to the rectum after a a colectomy?  We are approaching my sons surgery date soon and I want to make sure I’ve challenged all of the options. Thanks

That’s called an ileo-rectal anastomosis. The folks who talk about it here don’t seem too happy with it (but on a support forum there will be mostly folks with problems to solve). Since the rectum is part of the large intestine, there may be good reasons to remove most of it in some situations.

@CSSunshine posted:

Has anyone heard of abdominal colectomy where they attach the small intestine to the rectum after a a colectomy?  We are approaching my sons surgery date soon and I want to make sure I’ve challenged all of the options. Thanks

Would definitely recommend a J-pouch over an IRA.

Isn't the IRA typically recommended to those who can't get J pouches due to Crohn's?

@CSSunshine In the original post you wrote that your son has already had a colectomy. It’s not clear from your post how much of the rectum is still intact. You didn’t indicate what the underlying reason for the colectomy was, which would influence any decision about trying to preserve the rectum versus trying to remove most (or all) of it. In the most common (stapled)  J-pouch technique a small (1-2 cm) rectal cuff is left behind as an attachment point for the J-pouch.

@CTBarrister posted:

Isn't the IRA typically recommended to those who can't get J pouches due to Crohn's?

I have heard of people getting IRAS in just about every case when it comes to IBD. Usually if the rectum is healthy, that is when some surgeons will recommend IRAS, but a lot of people have problems down the road with it. That is why I do not like to recommend it.

And some women may like to get IRAS because it has less of a infertility rate than a pouch and no pouchitis I believe. I personally think a J-pouch is better based on what I have read and heard. Just depends on the person and surgeon.

Thank you all for your help!   We opted for the J-pouch procedure and he is doing well, he is 2 days post op following the first surgery.  He will have 8 weeks or so and then they will do the second portion.  Any tips would be appreciated. Thanks.  

Does anyone know any blogs or websites that would be helpful as we move forward with his recovery, thanks!

@CSSunshine posted:

Thank you all for your help!   We opted for the J-pouch procedure and he is doing well, he is 2 days post op following the first surgery.  He will have 8 weeks or so and then they will do the second portion.  Any tips would be appreciated. Thanks.  

So happy he is doing great!!! Take it easy and feel better

I played baseball from ages 60-64 w/ a j-pouch ---- no problem at all

Chris Gedney played for the AZ Cardinals with a j-pouch.  He is now deceased but not from J-pouch issues. 

I rode horses for years and if you ride you need to be able to fall off too.  When I asked my surgeon if it was ok to ride (and fall off-not that I'm trying but sometimes it happens) he saw zero issues with it.  I did fall off a couple of times with velocity and was 100% fine.  Just like pre pouch life.

More than anything, I think for many, contact sports is a bone density issue as years with UC and the like and steroids does a number on your bones. 

Your son's body will tell him what he can or can't do.  If he in healthy times of remission can play the sport, my surgeon didn't have any issues with going back to those sports post surgery.

Thank you, it’s comforting to know and hear others success stories.  He is now four weeks postop from the first surgery and is recovering well!  He will have his final procedure in May and he is hoping to be on the soccer field playing varsity soccer in August.  Any good recovery tips are welcomed!

@CSSunshine posted:

Thank you, it’s comforting to know and hear others success stories.  He is now four weeks postop from the first surgery and is recovering well!  He will have his final procedure in May and he is hoping to be on the soccer field playing varsity soccer in August.  Any good recovery tips are welcomed!

Just definitely be careful and drink plenty of water and hydration drinks

@CSSunshine posted:

Thank you, it’s comforting to know and hear others success stories.  He is now four weeks postop from the first surgery and is recovering well!  He will have his final procedure in May and he is hoping to be on the soccer field playing varsity soccer in August.  Any good recovery tips are welcomed!

He'll be good. I was back in the gym about 3 months after takedown surgery.

@Jaydog posted:

He'll be good. I was back in the gym about 3 months after takedown surgery.

Everything still going okay at the gym Jaydog?

@Former Member posted:

Everything still going okay at the gym Jaydog?

Yes going pretty good. I sleep through the night every night. I'm in the gym 5 to 6 days a week. I feel really healthy. Best I've felt in years

I say a j pouch will have almost no effect on any sport of activity one does

@vince66 posted:

I say a j pouch will have almost no effect on any sport of activity one does

I cannot agree with that, espeically people here sharing their personal sories with me. We are more fragile/delicate, we need to be extremely careful! I know its not fair but that is life.

@Jaydog posted:

Yes going pretty good. I sleep through the night every night. I'm in the gym 5 to 6 days a week. I feel really healthy. Best I've felt in years

You sleep through the night?! You are extremely lucky!!!! I am happy you are doing good I bet you are happy you are not a 9%er lol! How many bms  per day do you have now?