# Ostomy vs J-Pouch?



## kyle_vk (Jul 25, 2011)

Hi all,

i was dx with Crohn's / UC (no clear decision yet) 10 years ago. First meds i tried cleared up my symptoms for about 6 or 7 years, life was good. Then those stopped working and i've spent the last 3 1/2 years trying every drug out there with no luck. So here i sit in the hospital (day 3) receiving some IV steroids and having my first surgical consults as we try and figure out the next steps in disease control. My question is, especially for those that have done both, is cycling more bearable with an Ostomy bag or the J-pouch? I'm rarely out for more than a few hours, usually under 2. I'm nervous that with a J-pouch i'll have more pains to deal with as well as more potential leaking or incontinence issues. On the Ostomy side, i'd likely need to wear some of the "Ostomy-armor" type belts and potentially carry supplies if i'm doing long rides. Any experiences would be welcome as this is nerve racking decision to consider.


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## coke (Jun 7, 2008)

kyle_vk said:


> Hi all,
> 
> i was dx with Crohn's / UC (no clear decision yet) 10 years ago. First meds i tried cleared up my symptoms for about 6 or 7 years, life was good. Then those stopped working and i've spent the last 3 1/2 years trying every drug out there with no luck. So here i sit in the hospital (day 3) receiving some IV steroids and having my first surgical consults as we try and figure out the next steps in disease control. My question is, especially for those that have done both, is cycling more bearable with an Ostomy bag or the J-pouch? I'm rarely out for more than a few hours, usually under 2. I'm nervous that with a J-pouch i'll have more pains to deal with as well as more potential leaking or incontinence issues. On the Ostomy side, i'd likely need to wear some of the "Ostomy-armor" type belts and potentially carry supplies if i'm doing long rides. Any experiences would be welcome as this is nerve racking decision to consider.


I had to have surgery in 2011. My UC wasn't properly diagnosed and it almost killed me. I was admitted to 3 different hospitals before they figured it out and rushed me to a specialist. I wasn't aware at the time, but they gave me less than a 50% chance to live and actually sat down with my mom to prepare her and let her know the seriousness of the situation and that I probably wouldn't make it. I firmly believe that prayer and God allowed me to survive.

The first surgery removed my large intestine. I had an ostomy for several months then had another surgery where the moved the ostomy. Also had a very painful situation where I coughed in the hospital and literally ripped my abs apart which required another surgery and permanent stitches.

I believe I lived with the ostomy for around 6 months. I felt the best i had in years, put on a lot of muscle, and was able to mountain bike and ride dirtbikes with a Phoenix belt.

It's very mentally challenging living with the ostomy, but I eventually got used to it. You have absolutely no control over your intestines, but you'll learn how to eat in order to keep things in control. Emptying it is no big deal and is doable trail side with some practice.

I eventually got a j pouch and have had it since 2012. It's so freeing not having an ostomy but unfortunately I'm part of the small percentage that has pouchitis. I feel miserable a lot of the time and have to go to the restroom 8 to 10 times a day. Diet makes a difference and thankfully I found some antibiotics that really help keep the pain in control.

I'm able to mountain bike as long as I plan for it. Strange thing is that the more I ride the better my pouchitis gets. I'm the fastest I've ever been on a bike and about a month ago I was able to complete a 100 mile singletrack ride on a singlespeed.

Overall the j pouch is better for biking but do some research on the possible issues. You'll most likely be healthier and feel better with an ostomy, but it's not something easy to live with.

Feel free to message me if you have any questions. I couldn't even begin to type all I've been through since having UC.


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## Cuyuna (May 14, 2017)

Inflammatory bowel disease by itself is hard to diagnose but the diagnosis between ulcerative colitis and Chrohn's disease is notoriously even more difficult to make. People can go decades without really knowing which of the two they have. It's a diagnosis made on clinical grounds. No real objective way to distinguish one from the other.

Ileostomy vs J-pouch is an ongoing debate. Generally, younger patients are more suitable for J pouches but the complication and revision rates for both is relatively high. Personally, I'd go for the ileostomy if it was me. I'd be reluctant to do either if the diagnosis was in doubt and Chrohn's disease was still a possible diagnosis.


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## chuckha62 (Jul 11, 2006)

Kyle,

As a fellow UC sufferer for the past 24 years, I feel for you. I'm fortunate in that I am currently _mostly_ in remission. I was nearly faced with the same decision several years ago and then miraculously went into remission for a couple of years. Now, I deal with mostly minor flares from time to time.

I can't offer an experienced opinion of one versus the other, but I remember thinking at the time the J-Pouch seemed to offer the most freedom to maintain an active life. Hopefully you've exhausted all options. As you no doubt know, this disease is particularly difficult to treat because what works for one person, doesn't necessarily work for another. If you've been through it all and still losing weight and wasting, don't put the surgery off too long. It can get to life and death pretty quick.

Edit: I just realized you said they're not sure if it's UC or Crohns? Have you not had a Colonoscopy? UC can be definitively diagnosed by doing one.

If you feel like commiserating on any of what you've been through, feel free to PM me.


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## kyle_vk (Jul 25, 2011)

chuckha62 said:


> Kyle,
> 
> As a fellow UC sufferer for the past 24 years, I feel for you. I'm fortunate in that I am currently _mostly_ in remission. I was nearly faced with the same decision several years ago and then miraculously went into remission for a couple of years. Now, I deal with mostly minor flares from time to time.
> 
> ...


I've had 8 or 9 Colonoscopies, i get them yearly now for cancer screening purposes if i don't already need them for medicine checks. Its been more often diagonosed as UC but has shown instances that look like Crohn's. This also lead to the surgical team planning to treat it as Crohn's to avoid repeat surgeries. They said as it stands now they would be taking my entire colon and large intestine, doing a temp illeostomy with the option for J-pouch should i choose it. And i am certainly trying to be aware of the timing for surgery. Part of the reason we did the consult now is because i'm not at an "emergency" situation, just out of options. I've tried Humira, Remicade, Entyvio, Asacol, Imuran, suppliments and just moved from Stelara injections every 8 weeks to 4 week intervals with Imuran added as combination therapy. Currently weening down from 60mg of Prednisone/day (at 40 now) so i should be able to tell by the time i get to 10mg if the other drugs are kicking in or not. I can tell the steroids are starting to wreak havoc on my joints though, 60mg is a lot for my 125lb frame, and i've been on and off them (more on than off) for 3 years.



Cuyuna said:


> Inflammatory bowel disease by itself is hard to diagnose but the diagnosis between ulcerative colitis and Chrohn's disease is notoriously even more difficult to make. People can go decades without really knowing which of the two they have. It's a diagnosis made on clinical grounds. No real objective way to distinguish one from the other.
> 
> Ileostomy vs J-pouch is an ongoing debate. Generally, younger patients are more suitable for J pouches but the complication and revision rates for both is relatively high. Personally, I'd go for the ileostomy if it was me. I'd be reluctant to do either if the diagnosis was in doubt and Chrohn's disease was still a possible diagnosis.


This seems to match with what i've heard/been told as well. Given my fairly active lifestyle and being 29, they felt like i'd be a good candidate for J-pouch. The only thing they didn't like is that i've been on steroids for so long and at fairly high doses. I just hate the idea of dealing with pouchitis or urgency issues vs the necessary work for a bag. one of those "the devil you know" situations i guess.


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## kyle_vk (Jul 25, 2011)

coke said:


> I had to have surgery in 2011. My UC wasn't properly diagnosed and it almost killed me. I was admitted to 3 different hospitals before they figured it out and rushed me to a specialist. I wasn't aware at the time, but they gave me less than a 50% chance to live and actually sat down with my mom to prepare her and let her know the seriousness of the situation and that I probably wouldn't make it. I firmly believe that prayer and God allowed me to survive.
> 
> The first surgery removed my large intestine. I had an ostomy for several months then had another surgery where the moved the ostomy. Also had a very painful situation where I coughed in the hospital and literally ripped my abs apart which required another surgery and permanent stitches.
> 
> ...


Thanks for the detailed response, it truly is helpful. This is something i've been praying over as well, God has always provided so i'm not doubtful that whichever route i end up going it will all work out. Plus i'm a glutton for punishment so the more something restricts me, the more aggressive i get at breaking free. I've adjusted my diet since leaving the hospital. I'm trying Lactose free (minimal dairy in general), and low fiber (cooked or skinned veggies, picky on granola bars..etc), and less of the sugary stuff/caffeine. Hard to say if its doing a lot because i'm still on steroids but i do seem to have much less bloating which i attribute to the lactose side of it. I will definitely contact you if i have any specific questions when the time draws nearer. My doc is giving me 6 months of trying Stelara at 4 week intervals before pulling the plug. I doubt it will take that long to know if its working or not. after that its either clinical trials or surgery and clinical trials are not to tempting for me because i would need to do a 2 month wash out period before i could even start and then i'd be making a long drive for check-ins every couple weeks on top of it, all without even knowing if i was on a placebo, low dose, or high dose of the drug. Without having experienced it i think i could get used to an ostomy. Fortunately for me my wife, sister, friends and inlaws are all nurses...so most people in my life wouldn't even bat an eye at it and i have virtually no cares about the appearance of it, just understanding the day to day effects it has is what i'll need to weigh when comparing to J-pouch.


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## bknopp (Apr 1, 2016)

I sent you a PM, please check it. I was in your situation, actually much worse, in 2009, and I chose this: https://bcir.com/. Good luck!


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## kyle_vk (Jul 25, 2011)

Thread update. after finding areas of Dysplasia (pre-cancer looking cells) at my last colonoscopy, the decision was finalized to have surgery. Latest findings looked mostly like Crohn's throughout so i'll be going full bag (pun intended :] ). First surgery will be March 11 (have to do it in two parts because i've been on steroids for so long). I'll report back in the spring with some hopefully helpful info for anyone else who may read this.


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## Miker J (Nov 4, 2003)

Hey Kyle, this is a rough road but we are rooting for you. Keep us posted on your progress.

I care for patients with this sort of thing.


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## chuckha62 (Jul 11, 2006)

Wishing you all the best, Kyle. I'm in a tentative remission, mostly. What you're about to do is never far from my mind. Keep us posted.


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## kyle_vk (Jul 25, 2011)

Miker J said:


> Hey Kyle, this is a rough road but we are rooting for you. Keep us posted on your progress.
> 
> I care for patients with this sort of thing.





chuckha62 said:


> Wishing you all the best, Kyle. I'm in a tentative remission, mostly. What you're about to do is never far from my mind. Keep us posted.


Thanks guys, i'm feeling really good about it...excited to feel normal again (can't remember what that feels like) and maybe even put on a couple pounds for once! Chuck, hopefully things stay calm of ya! there lots of meds out there and more treatments being found ever month...some of us just get the short straw and have no luck with all of them lol. Silver lining, i'll be able to rock a "no colon still rollin" sticker on my bike


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## bknopp (Apr 1, 2016)

Hang tough, Kyle. I was hoping that the BCIR might save you from the bag, but as long as you back in the saddle, it's all good.

Brian


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## coke (Jun 7, 2008)

kyle_vk said:


> Thanks guys, i'm feeling really good about it...excited to feel normal again (can't remember what that feels like) and maybe even put on a couple pounds for once! Chuck, hopefully things stay calm of ya! there lots of meds out there and more treatments being found ever month...some of us just get the short straw and have no luck with all of them lol. Silver lining, i'll be able to rock a "no colon still rollin" sticker on my bike


Prior to getting sick, I was in to power lifting and weighed 220. After getting sick, spending months in hospitals, and literally living off an IV for a while, I lost around 100 pounds. I looked like one of the prisoners in the concentration camp photos. Every rib was visible, and my thighs were about the size my arms are normally. Lost so much muscle I couldn't couldn't sit up in bed without something to grab on to, and walking was a challenge.

After I got the ostomy, I felt amazing. It was a slow recovery, but I eventually put on a lot of muscle from lifting and got back to 185. I was playing basketball, lifting, riding 4wheelers, golfing, and mountain biking. It will be a long road, but just know that you'll feel better and your body won't be holding you back like it has been.

The biggest challenge for me was going through multiple surgeries. I'd make great progress fitness wise between surgeries, but all that would essentially be reset after being cut open again. It was tough to find motivation to work out knowing that all the progress was about to be taken away, but being fit and healthy going in to the surgeries made a big difference and shortened the recovery times.

I've been living with a J pouch since around 2012. I just don't feel well most of the time, and often wonder if I should have stayed with the ostomy. It had its challenges, but that was the last time I felt normal.


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## kyle_vk (Jul 25, 2011)

coke said:


> Prior to getting sick, I was in to power lifting and weighed 220. After getting sick, spending months in hospitals, and literally living off an IV for a while, I lost around 100 pounds. I looked like one of the prisoners in the concentration camp photos. Every rib was visible, and my thighs were about the size my arms are normally. Lost so much muscle I couldn't couldn't sit up in bed without something to grab on to, and walking was a challenge.
> 
> After I got the ostomy, I felt amazing. It was a slow recovery, but I eventually put on a lot of muscle from lifting and got back to 185. I was playing basketball, lifting, riding 4wheelers, golfing, and mountain biking. It will be a long road, but just know that you'll feel better and your body won't be holding you back like it has been.
> 
> ...


Thanks for the input! Yeah i've always been skinny (5'9" and 135lbs right now which is the heaviest i've ever been @ age 30), so being sick has made it extremely hard to not get malnourished. I'll have two surgeries since i've been on high does steroids for so long. 1st one will take out 80% of colon, probably some small intestine, and add the bag. 2nd surgery will be taking out the rest of the colon, rectum and sewing it all shut. My surgeon said most of his patients put on 15-20lbs between surgeries. I hope for your sake that your health gets better and that the J-pouch works out in the long run. Anyone in this position knows there are always ups and downs.


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## chuckha62 (Jul 11, 2006)

Hang tough Kyle and get healthy quick!


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## kyle_vk (Jul 25, 2011)

Well it's 4am and I can't sleep but the surgery was successful and the bag is in place. A couple more days in the hospital to heal up and I'll be able to begin the recovery process at home.









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## bknopp (Apr 1, 2016)

You've kept your sense of humor after all you been through. You are a young Wolverine, dude! Keep on keepin' on!
Brian


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## kyle_vk (Jul 25, 2011)

bknopp said:


> You've kept your sense of humor after all you been through. You are a young Wolverine, dude! Keep on keepin' on!
> Brian


Thanks Brian, Humor is a powerful medicine (unfortunately not enough to cure crohn's). Was out of the hospital in two days (spent the last day doing laps around building i was getting so bored). The tough part now is not over doing even though i feel pretty good most of the time all things considered. hopefully in a couple weeks i'll be able to swing a leg over a bike and go for some easy cruising around the neighborhood. Fortunately i live in michigan and the dreaded freeze/thaw season is upon is so most of the local single track will be closed for a couple weeks unless we get all warm weather. I appreciate all the kind words and advice from everyone..i'll report back later on after i've got some riding in and have my own insight to give.


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## bknopp (Apr 1, 2016)

kyle_vk said:


> Was out of the hospital in two days (spent the last day doing laps around building i was getting so bored).


LOL! Don't I know that feeling! I was in the hospital for 22 days post-BCIR surgery. I got tired of stalking the halls, pushing my IV tree along, so I went outside and tried to get on a bus to the beach (Sarasota FL area). Bus driver takes in the skinny dude with hospital gown, IV tree, walking up to pay the bus fare. "Ohh, honey . . .did you escape from someplace you ain't supposed to have?" "Yes m'am." Hospital nurse on the bus marched me back to my floor.

Don't rush it on the bike (well, maybe get on a trainer ASAP). Heal up strong and then don't look back!

Brian K


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## coke (Jun 7, 2008)

I remember sneaking out of the hospital for some sunshine. Felt amazing.


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## kyle_vk (Jul 25, 2011)

I'm back and out of shape!









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## coke (Jun 7, 2008)

kyle_vk said:


> I'm back and out of shape!
> 
> Sent from my Pixel 3 XL using Tapatalk


Good to hear. If you're anything like I was, the fitness will come back quickly since you're now much healthier.


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## bknopp (Apr 1, 2016)

kyle_vk said:


> I'm back and out of shape!
> 
> 
> 
> ...


Fat Bikes will build you up, not tear you down. You're light post-recovery, so nothing to literally weigh you down but bikepacking gear. When you regain your strength, you'll be unstoppable.


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## kyle_vk (Jul 25, 2011)

coke said:


> Good to hear. If you're anything like I was, the fitness will come back quickly since you're now much healthier.


Thanks, i think it will too.



bknopp said:


> Fat Bikes will build you up, not tear you down. You're light post-recovery, so nothing to literally weigh you down but bikepacking gear. When you regain your strength, you'll be unstoppable.


I was light before surgery, now blow away in a breeze light  In all seriousness it feels great just to feel like i can start building up and keep moving forward. before it felt like there was a wall that no amount of exercise could break.

Completed my first race of the season 6 weeks post op. My goal was to make this race. I ended up completing it without having to stop or walk the bike, even beat my time from last year by a minute (different bike and reverse direction...but it still felt good).


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## kyle_vk (Jul 25, 2011)

Just adding to this for anyone who may search for info. I had part two of my surgery in November. This was to remove the last 20% of my colon as well as my rectum (no need for it and it becomes a cancer risk if left in). They were able to go in through the same incisions which was nice, other than having to cut out the rectum and stitch that shut. They nicked something during the procedure so i had some internal bleeding but nothing that couldn't be handled with a little drainage tube. went home after 3 days in the hospital, i had a HGB level of 7.1 (and dropping) when i left but my wife is an ICU nurse so they let me go. I ended up busting open some stitches around the incision through my belly button and spent a solid todays trying to stop the bleeding which with already low blood levels made for a lot of near passing out lol, nothing a couple packs medical tap couldn't fix though. The rectum removal made this definitely worse than the first surgery. sitting isn't much fun for a while and i ended up needing 2 weeks off work before i could go back (office job). I won't go into details on the rectum removal but if anyone has any questions on it feel free to pm me. I will say that getting stitches taken out of your crack is probably one of the worst pains i've had in this whole process haha. It took me a a good couple months to feel normal but now that its done i'm doing as good as ever.


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## coke (Jun 7, 2008)

I coughed really hard after one of my surgeries and ripped my incision open. My incision was basically from the top of my abs to about 3” below my navel. I had to go back in for surgery and they installed some permanent sutures.

That entire process was really rough.


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## kyle_vk (Jul 25, 2011)

coke said:


> I coughed really hard after one of my surgeries and ripped my incision open. My incision was basically from the top of my abs to about 3" below my navel. I had to go back in for surgery and they installed some permanent sutures.
> 
> That entire process was really rough.
> 
> Sent from my iPhone using Tapatalk


i can't imagine with an incision that big. I got sick on night one in the hospital and the vomiting (more like dry heaving) was the worst. Every stomach contraction cause a nice shout.


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