HealingWell
Search Close Search
☰

J pouch in less than a month... Anxious/worried/excited/questions

Support Forums
>
Ostomies
✚ New Topic ✚ Reply
12 3
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 12/15/2010 3:14 AM (GMT 0)
Hey everyone, some of you know my story but for those who don't, I'm a 20 year old who, before my ileostomy, was a VERY active person... Raced motocross, wakeboarded, played football, as well as soccer. I was always on the move, and I haven't been able to get on a motocross track in 8 months now :( I pretty much had to have emergency surgery as I was just too sick... I was in the my 4th flare and at this time I was already on remicade... so it was time.

I'm having my J pouch surgery done January 3rd, I have a pre op appointment on the 21st. Getting very anxious as well as VERY nervous, I've bee in the whole hospital scene FAR to much for a 20 year old, I see people I went to school with and my friends complaining on facebook status's and just in life in general about such pity stuff.. and just laugh to my self and thing "try going through what I've been through."

anyways I know there are good chances of small complications that may cause some real horrible times in the hospital, but I'm pretty much used to that haha, just 2 weeks ago I was in the hospital with a major blockage and had to have a tube shoved up my nose, down my throat, and into the spot where the blockage was. and that stayed for 2 full days. So that's not my big concern... my biggest concern is what will I be like AFTER the surgery physical activity wise?

Is it going to be like i'm back to normal? Can I ride motocross, play soccer, play football, wakeboard?? Can I take falls on the dirt bike track without any harm to my abdomen? Just all worries I'm having as I want my 20 year old active life back!
Posted 12/15/2010 4:52 PM (GMT 0)
I am having my surgery on January 3rd! I am at the cc right now doing my pre-op. I feel so much better now after meeting with everyone here.

Good luck and I hope January 3rd is the first step in getting better for both of us.
Posted 12/16/2010 3:24 PM (GMT 0)
Disneynut66: Nice! hopefully we both have smooth recoveries...
Posted 12/17/2010 12:46 PM (GMT 0)
Chevy have you asked your doc? I do anything I want with my ileo (but NOT motorcross!!) and really don't think anything of it.

Have you asked your question on www.j-pouch.org? I bet the folks over there could answer that a lot easier with all their experience!

Good luck on the 3rd...keep us updated on your recovery!
Posted 12/18/2010 9:54 PM (GMT 0)

Chevy - as Ohio said - check w/ your surgeon and post on j-pouch.org as there's probably a motocross rider, wakeboarder, football and soccer players there.  I would expect that you will need to wait for a recovery period and then can do what you want that you are comfortable doing.  I had my takedown surgery in March of this year and spent the summer riding my motorcycle (not motocross but on some roads it sure felt like it).  I started with short rides and worked my way up to doing a 5 hour ride with no problems by Sept.  I'm going to take my first snowboarding lesson this coming week and if I don't like it I'm planning on skiing this season.  I think I would be more afraid of football and soccer than riding and wakeboarding but others and your surgeon will probably tell you that it's not a worry once your abdominal muscles have healed.

As long as you wear your upper body protective gear you should be ok w/ your abdomen if it reaches low enough.  I know that one of the motogp racers was wearing abdominal protection under his leathers after some GI issues and I believe that motocross has abdominal protection that you can purchase for extra support and protection while you are getting back to 100% and for mental comfort.  One of the biggest things I noticed when I started riding again was abdominal pain that was associated with my scar tissue stretching internally as my insides bounced around but those pains are all gone.  I definitely felt all the bumps in the road initially.

Since you are a lot younger than me and probably in much better shape, I'm guessing that it won't take you as long as it did me to get back to a fitness level that allows you to ride like you used to.  One thing you need to be careful of now and after takedown is dehydration.  I have a camelbak pack that I wear for long rides so that I can drink and ride. ;)  I will be using it for longer skiing or snowboarding sessions also.  Make sure you do build up your back and abdominal muscles in addition to your overall fitness levels once you're cleared to exercise as it will make going back to riding much easier.  Also - start slowly and work your way back to your old skill level.  Some short and slow rides initially will let you know how your body is dealing with the bumps of motocross and you can get faster and go for longer the stronger, more adjusted, and more comfortable you get.

Good luck on the 3rd!  I'm sure all will go well and you'll be living your new and exciting life soon!!

Posted 12/19/2010 12:25 AM (GMT 0)
DucRidr- Thank you very much for your words, I have my pre op on the 21st... I'm going to ask my surgeon every concern I have! But just knowing that it will all heal up and I will be able to lead a normal life is a great feeling. Honestly my biggest thing I don't want to go through is the CATHETER! and the JP drain and all the other tubes they have to eventually pull out!

I'm actually going to ask if they can remove the catheter before I awake because that part was horrible. The worst feeling was the JP drain though although I know that that can't be removed for a few days...
Posted 12/19/2010 9:48 AM (GMT 0)
hey mate, i was in the same position as you. im a 20 yr old and UC literally screwed me over for almost 2 years before surgery. i know exactly what you mean with your friends on facebook because mine are exactly the same, always feel like giving them crap, but not the type of person to really ***** on the net to people.

im almost a month post-op and am doing really great, i had a few complication in hospital ended up being there for 9 days 5 of which were in intensive care. but in the end all worked out and im on the road to recovery.

prob going to the toilet about 6 times a day and maybe twice at night ( which should keep getting fewer )

as far as im concerned there is no reason why you wont eventually be able to get back on the moto, its just a matter of getting back into shape and making sure your stomach muscles are strong again.
Posted 12/19/2010 3:46 PM (GMT 0)
Webby- Thank you for your words! so how are you feeling overall after a month? how long do you think it'd be until I could go back to work (I spray Rhino Linings spray in bedliners) after my surgery?

What complication did you have put you in intensive care? I'm hoping my hospital stay isn't quite the hell it has been in the past!
Posted 12/19/2010 4:30 PM (GMT 0)
Chevy - I understand the hatred of the catheter. I woke up w/ 3 drains, a catheter, and a rectal tube after takedown. The plus - I didn't have to get up to go to the bathroom on my own for the first 24 hours. The bad news, it hurt no matter how I tried to sit or lay down. I was up and walking that day (as always). They took my last drains out the day I got out (Day 3).  As everyone says, measure your progress in weeks, not days and as always, walk, walk, walk, walk. :)  Good luck!  Are you doing 2 step surgery or 3?  I see you got your ileo this year but did they create your pouch then also so your Jan surgery is takedown?  Stay positive!  A good mental attitude goes a long way during recovery.
Posted 12/19/2010 5:38 PM (GMT 0)
Ducridr- Yes they created the pouch so all I have left is the takedown January 3rd! And yeah with my Ileostomy I also had a rectal tube in... and had to get it put BACK in on like the 5th day due to an infection growing....

Hopefully I will have a decent recovery on the 3rd!
Posted 12/20/2010 12:06 PM (GMT 0)
hey mate, glad i could help. im not going back to work till after the new year, but thats really more to do with wanting a holiday and finally been able to enjoy time off. i could have been back at work already (but i only fill shelves at a local store, so dont know how tthat compares to your job.

as for the complications, i had a slight bleed so lost blood consistently for a few days before i blacked out when i went to get up. but they sorted it out pretty quick. and just had problems with my heart cause of how much blood i had lost and how hard it was trying to pump.

but am doing great now.

ps. i also woke up with a catheter, rectal tube and a drain tube in my abdomen. and not matter how bad you think they are coming out ( which i never had a problem with, except the drain tube felt funny and went for ages ) they are definitely worth it. its so much better to be able to sleep and not worry about it for the first day or 2 then have the extra stress of having to get up and down have to go to the bathroom straight after surgery when your most in pain.
Posted 12/22/2010 10:38 AM (GMT 0)
You'll be able to resume all your normal activities once you are sufficiently healed. The only exercise you want to have in the first 6 weeks is walking. Walk every day and build up your stamina and your mileage. After six weeks you should be able to do light weights but do check with your surgeon first.

Be patient!!! Recovery from reversal can sometimes be tricky but remember that improvement will come in 6 week increments.

Sue
Posted 12/31/2010 8:53 PM (GMT 0)
hi jumping in on this thread with a question for you guys, im afraid i dont know anything about j pouch's but i had my ileostomy just over 3 weeks ago, was an emergency one not a planned one as I had a really bad flare that didnt react well to steroids. I had had the flare for about 2 months so was very weak and underweight going in for the surgery. Anyway I'm wondering about the level of activeness you talked about, before the surgery i was hiking,rockclimbing or kayaking down a river every weekend. How long after your surgery was it before you were able to do your activities. cos Its 3 weeks for me and i still pretty terrible but i did take my last steroid on tuesday so it could just be that (had to be weened off them, tried dropping and my pulse went up to double the norm), had been on them for a good while. Im 20 too and was in college studying till i had to defer for this year due to the 2 months or I have missed and the time I will miss recovering. Thanks

Post Edited (garanmoldu) : 12/31/2010 2:02:56 PM (GMT-7)

Posted 12/31/2010 10:41 PM (GMT 0)
Garanmoldu- I too am an avid hiker and rockclimber, and also went into a bad flare in September that wouldn't respond to a huge dose of Prednisone. This flare actually started while I was on a backpacking trip. I spent 14 days in the hospital and lost an enormous amount of weight and muscle mass. I almost had to go into emergency surgery too, but they managed to get the flare under control with a dose of Remicade. The Remicade made me really sick though so I had to stop taking it. However, it did buy me a month to gain a little strength before getting a permanent ileostomy on November 8th.

As far as returning to activities, I would be conservative. Due to the effects of Prednisone on my tissue's ability to heal (I was on 30 mg at the time of surgery), my incision opened up down through the muscle layer after about 14 days (even though I did not lift anything or do anything strenuous). I had to go back into surgery immediately and it was repaired nicely. However, even after that it opened again just at the skin level. I am still having issues with the wound at 8 weeks and my incision is still pretty painful (my stoma function, appetite and energy is great though... no problems there). Since you were on Prednisone at the time of your surgery, the healing time of your tissues, though probably not as drastic as mine, could also be affected. I would be careful with doing anything too strenuous too soon. The last thing you want is an incisional hernia.

Right now at 8 weeks I am able to go on short walks on flat paths. I figure, though I love rockclimbing and backpacking immensely, it is probably better to play it safe now so that I can enjoy these activities fully healed and in good shape later. I am going to build into hiking slowly. I hope to be able to hike some easy peaks with a light pack by this summer... maybe even do a short overnight ultra-light backpack trip carrying very little gear by fall (even though I usually do week-long trips). I may wait to rockclimb for a year when I am sure my abs are strong and completely healed. And if by this summer I don't feel strong enough to do any of these things, I am going to be patient and wait. Maybe I am being too careful, but I don't want to do any major damage to my body. It has been through enough!
Posted 12/31/2010 11:06 PM (GMT 0)
Blueheron- thanks, yeah I started remicade when i was in, was home for a week the nback in and surgery a week later when my immune system was strong enough for it. through the muscle layer! ouch, with spending time on facebook im finding it hard to feel sorry for people but you had a hell of a time :( . yeah my stoma function is still liquidy, on immodium which makes it thick. appetite and energy not so great either now, was good while i was on the steroids though so i assume they will return soon.

Yeah I dont plan on doing anything too active too soon, was more just wondering how long of a recovery I can expect for activities like that, or even just in general. Im pretty desperate not to get any complications, have already spent way too long in hospital for now, about 4 weeks this time round (2 UC and 2 surgery)
Posted 1/3/2011 5:07 AM (GMT 0)
Chevy - Good luck tomorrow!! I know all will go well. I wanted to update you on my trip. I took a 2 hour snowboarding lesson and fell non-stop on my front and back. I was in pain for the next 2 days...but it was muscle pain. My jpouch did awesome. I proceeded to ski for several days w/ no problems other than the fact that I was at a higher altitude and am very out of shape. :)
Posted 1/15/2011 12:41 PM (GMT 0)
Hey everyone!

Great update. Surgery went pretty much text book perfect. Surgeon came out after and told my family that the surgery went great. I woke up in pretty minimal pain, my first words to the nurses were "is the bag gone?", as my surgeon told me there is always a very small chance you may need the bag 6 more weeks for the pouch to heal if everything won't adhere correctly.

Anyways, I really had no REALLY bad days recovering... my 4th day (as my surgeon warned me) was my worst, just felt crappy, had the dry heaves one night (WORST abdominal pain heaving after surgery) but other then that it was a pretty straight forward recovery. starting using the bathroom on the 5th day and went home on the 7th, actually BARELY felt like i just had a surgery as I was leaving the hospital.

Been relaxing the last few days and feeling great!

I think a lot had to do with the fact I know I had one of the best surgeons available.... Anybody in the Carolina area I suggest Dr. Koruda of UNC very strongly, peoples only negative remark about him is his bedside manner. Which of is actually kind of calming to me, I think it's the fact he takes everything as if it's no big deal, like the 6 hour surgery is nothing to him and he is kind of in and hour with patients... But this is due to the fact he has been doing this 30 years... He is educate at Yale and it amazing at what he does, UNC is a teaching hospital and he teaches the medical students everything they know.

I couldn't have asked for a better time going through this surgery, I was expecting much worse and I feel great
Posted 1/15/2011 12:54 PM (GMT 0)
Hey Chevy -- way to go!! Best of luck to you. Be sure to take it slow and go step by step. But it sounds like you are well on your way.

Hubby had his surgery 12/17th with the hope of j-pouch but had a lot of strikes against him going in. In our set of circumstances it is not the end of the world and we are adjusting just fine. However if he were in your position he would have been very disappointed not getting the opportunity.

So rest, recuperate and hopefully not too much discomfort for you while doing so. What a great way to start this new year. All the Best!!!
Posted 1/15/2011 1:25 PM (GMT 0)
Thank you UC Wife, yeah my first surgery was A LITTLE different then this one... I went into my first one at 118 pounds (I'm 6 feet tall) at the climax of a horrible flare... pretty much mandatory and I went into the hospital with the first words to my doctors, I want the surgery (4th time in 2 years for a 20 year old is just enough, could not deal with it anymore and my life was being torn apart). Also I was on a huge dose of prednisone and that just made everything with the healing that much more difficult.

But anyways, it feels so amazing to look down and actually see my regular (stapled up!) abdomann.... I race motocross and have been about as highly active as one can be my whole life.... so I can't wait to get back into all my activities, I know it's gonna be a while and I WANT to wait more then enough time as it's definitely worth it to wait then to have something happen with me rushing too much too soon...

Good luck to you and your husband! I know you're both just happy to have the horrible disease gone as I was
Posted 1/15/2011 1:49 PM (GMT 0)
That is such wonderful news! I can't wait until I can have my reversal. I understand what you mean about being able to see your stomach. The bag is still foreign to me and can't wait to see my tummy again, especially since I have list 13 pounds so far...a definite benefit of the surgery since the prednisone caused me signficant weight gain.

Keep us updated and let us know when you start all your activities again...it will give me hope.
Posted 1/15/2011 2:07 PM (GMT 0)
Disneynut- thank you very much, and I wish you luck in April and am glad I can give you hope!

I know a lot of people as I did looked at that site "jpouch.org" and see HORROR stories. I'm going to post one of the threads that I just read and could just see that this post would help ease A LOT of peoples minds who are going into the surgery...

http://j-pouch.org/eve/forums/a/tpc/f/9151071921/m/1617047695

My favorite post is: "Statistically (don't know if anyone already posted this; your surgeon probably told you this) the satisfaction ("success") rate with the surgery is 90%+. That means you are seeing the 10% here, with a smattering of people who would fall in that satisfied category."
Posted 1/15/2011 3:14 PM (GMT 0)
Great news!!

Just remember to take it easy and not to be discouraged if there are down days. Isn't it wonderful to be back on the road to full health!

And I fully agree....having the right doctor is EVERYTHING

Cathy
Posted 1/17/2011 8:29 PM (GMT 0)
Chevy,
I had the j-pouch surgery many years ago - life was quickly back to 'normal' in about two months. Tackle football might be out - but I play full court basketball 2-3 times a week with no problems. There were a few weightlifting exercises that I have learned to avoid as well - but that's pretty much it.
Worry not my friend - life will be better than you expected in no time
Jim
Posted 1/18/2011 1:29 PM (GMT 0)
How do you feel now? How many times are you going a day? I have read recently that a lot of people think recovery from this surgery is harder than the first surgery. What do you think?
Posted 1/18/2011 2:13 PM (GMT 0)
jmhis- Thank you very much, glad to hear you've had a "normal" life after surgery! and yeah I'm not too concerned about the football thing, that was kind of when I was younger haven't played much lately, but I'm more concerned about motocross... I've been racing/riding since I was 12, then just got back into it last year pretty heavily, and it's what I enjoy doing the most in life.... what scares me is one hard fall on the track is worse then any football hit, I would of course be wearing chest protector and a kidney guard (guard that goes around your abdomen) both of which I didn't wear before...

Disneynut- I'm feeling OVERALL good, I've had some crappy nights where I was up quite a bit, but I think I found the culprit of that.... each night it happened my mom had made me a milk shake before bed, and then I'd also have a glass of milk before bed... so I'm thinking maybe too much milk too late and too soon? I'm not sure but last night I didn't have any milk and was only up twice. Overall I'd say during the DAY I'm going about every 4-5 hours which isn't horrible for me so soon after surgery. As for my recovery, It is 232345324324 X's easier then the first just because with my situation I went into the first surgery just about as sick as I possibly could. I was 118 pounds (6 foot) and at the peak of one of my worse flares, not to mention on a 60 mg dose of prednisone, which completely ruined my healing of everything and made it so much harder for my incision/stoma site to heal up correctly. I basically had to teach my legs to walk again after my first surgery as I had been basically laying down for 3-4 weeks straight and lost 55 pounds...

I'm more than happy with my surgery this far.... as I know I have to take it week by week and not day by day for this recovery and it will only get better
✚ New Topic ✚ Reply
123