Living with a J pouch

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betsaronie
Regular Member


Date Joined Oct 2007
Total Posts : 318
   Posted 1/23/2012 8:46 PM (GMT -7)   
I'm a new j-poucher here too! I started on this forum and after having my colon burst i went to the ostomy board where everyone was so wonderful. I honestly don't know what i would have done without everyone over there and all their help. I'm 7 months out from my surgery and honestly I don't even think about the fact that i don't have a colon anymore. I go to the bathroom about 6 times a day. i stopped waking up at night after just 4 months, but i do have night time leaking (a tiny bit of mucus) 5 out of 7 nights. I have to wear a pad to bed, but i think that's so much better than simply crapping yourself in sleep like i used to when i was in a flare. Plus my surgeon assures me that until i hit one year, i can still hope for it to go away and it used to be every night, so i have high hopes.

I can't really pass gas without going to the bathroom most of the time. Sometimes its fine if i'm in the right position, lying down or sitting at an angle. but mostly, if im feeling really gassy (like when i eat broccoli) i just go to the bathroom. And drinking alcohol differently increases trips. I'm totally a noisy pooper now and suffer from shy colon so i can't go if i know someone can hear me. darn self-consciousness!

I only have one food i can't eat. Leafy greens. i couldn't tolerate them before surgery either and salads are over rated :)

I feel better than i can remember and aside from my scar (which is rather large since i had emergency surgery) don't feel abnormal at all. granted I haven't started dating since my surgery so that will be interesting to figure out how to tell potential dates about my surgery and reactions to the scars, but i figure if a guy isn't ok with that then he isn't good enough for me anyway.

you boys out there, I am a lady, but my surgeon did point out to me that the main thing for men to be concerned with is the preservation of your sphincter muscles. A good surgeon will be able to do this. this is what prevents incontinence, and allows men to still get erections. You'll want to do your research on the best of the best. Cleveland clinic is of course great, and I would recommend my Cincinnati Surgeon Janice Rafferty. She's one of the best in the country as well. Preservation of those muscles is key to the J-pouch being a good option so all the well known surgeons should be safe choices.

The surgery is a long process and can be trying while you get used to the temp ostomy. But honestly even that was better than how awful i felt with UC. I wish i had had the courage to elect surgery 4 years ago when everyone told me there was no chance for me to avoid it. I would get all that time back. It's scary, but there are so many people out there that have gone through and survived and are happy with their decision. like my sig says, I love my Jpouch!
-diagnosed with UC Dec 2006 at 22
-allergic or intolerant to all 5ASAs, sulfa and 6-mp
-emergency transverse colostomy on 9/13/10 from perforated colon
-J-pouch surgery step 1 of 2 3/21/11
-Takedown 6/13/11
I <3 my J-pouch!

ByeByeUC
Veteran Member


Date Joined Feb 2011
Total Posts : 4530
   Posted 1/24/2012 8:19 AM (GMT -7)   
Thanks for posting your story, betsaronie. I hope these positive stories ease some of the fears that some people have facing surgery. It's no cake walk but it's really so worth it in the end to be done with UC for good.
Marianne

DX UC - in 2005 when I was 37
Tried every drug-even Remicade-Tried diets-nothing worked-wanted my life back!
Step 1: J-pouch surgery (Laparoscopic restorative proctocolectomy w/ temporary diverting loop ileostomy) 6-25-10
Step 2: Take down surgery (Ileostomy reversal) 10/8/10
No more UC!!! Very happy with my results of this surgery-got my life back! :)

Somedude
Veteran Member


Date Joined Jul 2011
Total Posts : 3393
   Posted 1/24/2012 8:47 AM (GMT -7)   
betsaronie said...
, but i do have night time leaking (a tiny bit of mucus) 5 out of 7 nights. I have to wear a pad to bed, but i think that's so much better than simply crapping yourself in sleep like i used to when i was in a flare. Plus my surgeon assures me that until i hit one year, i can still hope for it to go away and it used to be every night, so i have high hopes.

 
Why do you have leaking mucus when you sleep? What is the different between the sleeping time or regular time. Why do you leak, does the surgeon know the answer to that?

Kerri1268
New Member


Date Joined Feb 2012
Total Posts : 2
   Posted 2/3/2012 1:42 PM (GMT -7)   
I, too, speak from experience and can assure you that my 16 year old pouch is fantastic and the best thing I have ever done. There was an adjustment period and there is a new normal -- but, after suffering with UC for 15+ years, it's a walk in the park. I am very athletic; I hike, bike, swim, ski, run, etc., and I have never been happier or more healthy.

53rd&3rd, just because you've had issues, I don't think it's appropriate to be so negative.

It's important for everyone to do the research, knowing that it is not only a viable option, but in 90% of the cases, very successful.

Good luck!

Kerri1268
New Member


Date Joined Feb 2012
Total Posts : 2
   Posted 2/3/2012 1:43 PM (GMT -7)   
By the way 53rd&3rd, your tone sounds very familiar.

susans53
Regular Member


Date Joined Jun 2010
Total Posts : 318
   Posted 2/3/2012 4:55 PM (GMT -7)   
J-pouch or UC? Hands down the J-pouch! Yes, it is the new norm, life is so much better!
 
UC 1996

5 asa, predisone, 6 mp
Dec 26, 2000, Emergency j-pouch surgery
Multiple complications, J-pouch redo- July 3, 2001.
Take down-Jan 3, 2002
Chronic pouchitis: cipro, pentassa, xifican, cortifoam, canassa, leviguin, lexapro
Gall bladder out-Oct 1997
April 2010 bad pouchitis flare-remicade (only 2 doses)
Aug 2010-adhesion surgery
Doing great! canassa, VSL#3D, fish oil, vit D

susans53
Regular Member


Date Joined Jun 2010
Total Posts : 318
   Posted 2/3/2012 6:17 PM (GMT -7)   
That was my feeling as well pre-surgery. But with a pouch it is different. There is no pain, no urgency, it just comes out, like peeing. After a while you don't even think about, I mean do you think about peeing. I'm in and out of a bathroom in no time. And yes, while I do have to use the bathroom in the middle of the night-well I say the ones who complain have never had children, or are old-lol-in fact my old husband with his enlarge prostrate gets up to use the bathroom more than me.
BTW, Even with all my issues I am very healthy now, eat whatever, whenever especially chocolate-lol, I'm a gym rat, love the malls, vacations, etc etc this pouch does not stop me but UC did.
The only other thing I would like to add is if you are thinking about going this route then try and do it while you are still somewhat healthy ( hard to make this choice when you are doing ok ), find a surgeon that you feel comfortable with and experienced and a really good GI to work with you after to keep your pouch up and running.
UC 1996

5 asa, predisone, 6 mp
Dec 26, 2000, Emergency j-pouch surgery
Multiple complications, J-pouch redo- July 3, 2001.
Take down-Jan 3, 2002
Chronic pouchitis: cipro, pentassa, xifican, cortifoam, canassa, leviguin, lexapro
Gall bladder out-Oct 1997
April 2010 bad pouchitis flare-remicade (only 2 doses)
Aug 2010-adhesion surgery
Doing great! canassa, VSL#3D, fish oil, vit D

Post Edited (susans53) : 2/3/2012 6:23:37 PM (GMT-7)


LooRunner2015
New Member


Date Joined Nov 2015
Total Posts : 6
   Posted 11/29/2015 10:14 PM (GMT -7)   
Thank you so very much for this post, I have been looking at all my options and this Helps

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10096
   Posted 11/30/2015 3:51 AM (GMT -7)   
susans53 said...
That was my feeling as well pre-surgery. But with a pouch it is different. There is no pain, no urgency, it just comes out, like peeing. After a while you don't even think about, I mean do you think about peeing. I'm in and out of a bathroom in no time. And yes, while I do have to use the bathroom in the middle of the night-well I say the ones who complain have never had children, or are old-lol-in fact my old husband with his enlarge prostrate gets up to use the bathroom more than me.
BTW, Even with all my issues I am very healthy now, eat whatever, whenever especially chocolate-lol, I'm a gym rat, love the malls, vacations, etc etc this pouch does not stop me but UC did.
The only other thing I would like to add is if you are thinking about going this route then try and do it while you are still somewhat healthy ( hard to make this choice when you are doing ok ), find a surgeon that you feel comfortable with and experienced and a really good GI to work with you after to keep your pouch up and running.


This isn't how you used to talk about your j-pouch. Your j-pouch sounded like a nightmare, no offense. And in fact you had to go back to a temporary ostomy (which you still have right now) it was so bad. I'm pretty sure I haven't confused posters either.

Post Edited (NiceCupOfTea) : 11/30/2015 4:02:53 AM (GMT-7)


susans53
Regular Member


Date Joined Jun 2010
Total Posts : 318
   Posted 11/30/2015 6:10 AM (GMT -7)   
No you have not. I had some really really good years with my j pouch even with pouchitis which was well controlled. I had many years of remission or on very mild old UC drugs. Remember I have my pouch 15 years this month. If you would have read some of my recent posts I mentioned that even with my now dis functional pouch I miss it. In fact I miss it so much that I have agreed to try Entyvio, and in 10 days am going for a reversal, I have a 50 50 shot of this working. My pouch has let me down twice. Once 5 years ago it made me very very sick, but Remicade got me back on track with horrible side effects, but 2 infusions gave me 4 years remission no meds, the last year the old meds starting working again, then it happened again this Spring, the meds stopped working,leading to my diversion. I am so happy to be given another chance with my pouch! I hate taking drugs BTW and this was a heavy decision to go on a bio especially after the Remi disaster but if it works I'll have a better life. Read my last comment, find a good GI to keep your pouch up and running. I've been blessed with my Drs otherwise I'm sure by now my pouch would have been removed.
UC 1996

5 asa, predisone, 6 mp
Dec 26, 2000, Emergency j-pouch surgery
Multiple complications, J-pouch redo- July 3, 2001.
Take down-Jan 3, 2002
Chronic pouchitis: cipro, pentassa, xifican, cortifoam, canassa, leviguin, lexapro
Gall bladder out-Oct 1997
April 2010 bad pouchitis flare-remicade (only 2 doses)
Aug 2010-adhesion surgery
Oct 2013 bad pouchitis flare- endocort, xifaxan, pentasa

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10096
   Posted 11/30/2015 6:29 AM (GMT -7)   
I know you hate your ileostomy, which is fair enough, and I hope you have better luck with your second takedown. But rewriting history to make it seem like the j-pouch was hunky-dory for you isn't fair enough: it's misleading.
Dx Crohn's in summer of 2000. (Yay skull)
Tried and failed: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, various diets.
Had surgery Feb '13 - subtotal colectomy with end ileostomy. First thing to put me into remission in 13 years.
Had second surgery 10th July '15 to reverse the stoma and connect the ileum to the rectum. Feeling rough.

susans53
Regular Member


Date Joined Jun 2010
Total Posts : 318
   Posted 11/30/2015 7:40 AM (GMT -7)   
Thank you. I'm trying to stay positive! I've really put up with more than most could indure but I really hate this ostomy. When the pouch was healthy it worked great, yes 2012 was a great year, but when it didn't it was hell! I'm not sugar coating that for sure and believe me I'm real nervous about this takedown cause it might not be pretty.

Post Edited (susans53) : 11/30/2015 2:07:54 PM (GMT-7)


ByeByeUC
Veteran Member


Date Joined Feb 2011
Total Posts : 4530
   Posted 11/30/2015 9:37 AM (GMT -7)   
NiceCupOfTea said...
I know you hate your ileostomy, which is fair enough, and I hope you have better luck with your second takedown. But rewriting history to make it seem like the j-pouch was hunky-dory for you isn't fair enough: it's misleading.
this is an old thread from 2012. How is she being misleading?

Susan, good luck with your takedown....hope this does the trick for you.
Marianne- age 47
DX Pancolitis in 2005. Family history of UC. Symptoms started shortly after I quit smoking
Tried every drug-even Remicade & Cyclosporine-Tried diets-nothing worked.
Step 1: J-pouch surgery (Laparoscopic restorative proctocolectomy w/ temporary diverting loop ileostomy) 6-25-10
Step 2: Take down surgery (Ileostomy reversal) 10/8/10
No more UC and no more drugs.Very happy j- poucher

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10096
   Posted 11/30/2015 11:10 AM (GMT -7)   
ByeByeUC said...
this is an old thread from 2012. How is she being misleading?

Susan, good luck with your takedown....hope this does the trick for you.


I didn't check the date of susan's previous post - I probably wouldn't have said anything if I'd realised it was nearly 4 years old. Sorry Susan.

susans53
Regular Member


Date Joined Jun 2010
Total Posts : 318
   Posted 11/30/2015 2:07 PM (GMT -7)   
It's ok and thank you.

Post Edited (susans53) : 11/30/2015 2:11:28 PM (GMT-7)


VinniesMom
New Member


Date Joined Oct 2015
Total Posts : 16
   Posted 12/1/2015 1:49 PM (GMT -7)   
Husband had jpouch 10 yrs ago and is doing well. No pouchitis, full control. His biggest complaint is occasional "butt burn".

The 10% erectile dysfunctiion sounds high to me. I think it is much lower than that.

My 15 yr old son is going for step 1 tomorrow. He's tired of suffering and does not want to prolong it by trying more meds that don't work and have nasty side effects.
15 yr old son diagnosed with pancolitis 9/15

Currently taking:
VSL #3
Fishoil
Prednisone
cort enemas
trying SCD diet

Did not respond to:
Delzicol
Prednisone (oral or IV up 60mg) small improvement
Remicade (1st 3 infusions 10mg / 4th infusion 15mg) small improvement
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