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Posted By : ByeByeUC - 1/5/2012 7:03 PM
To start, this post is for the folks reading on here thinking about surgery or have surgery looming in the near future. So please refrain from turning this into a "J pouch surgery is evil and don't do it thread". I just want to give the people out there some info in case they were wondering about living with a J pouch. There has been some questions recently and I am just telling MY experience on what it is like living with a J pouch now that I am over a year since surgery.

The biggest thing people seem to be worried about is the amount of times a day one uses the bathroom. I was worried about that too before surgery thinking 6x a day sounded like a lot. I am here to tell you it is not a big deal. There is no pain, no blood, no cramps and best of all, no urgency. I usually empty when I use the bathroom to go pee which I seem to pee more than 6x a day since I drink so much water. I think someone asked jokingly if I can empty on command. Well I kind of can. It's not like having a bowel movement with a healthy colon....that takes a lot longer! Emptying my j pouch is very quick. It's not like you are in the bathroom for hours on end which is what I thought too before surgery. I'm a very busy mom...I work part time for my husband's business and also part time in a busy retail store. Believe me, I don't have time to be sitting in the bathroom! I usually go 1x when I wake up...then I am good until about 3pm and go then. Two more times after dinner and then I usually have to get up in the middle of the night to go. That is my only complaint if I had to complain about something is the middle of the night bathroom trip. It does vary but that is my typical day.

I can eat and drink whatever I want again like before the UC days so that has been such a blessing for me. And the best part about having a j pouch, aside from not being sick anymore of course, is the fact that there are no more drugs to take. I just pop my multi vitamin and my iron supplement each day and that's it. A lot of people opt for just a permanent ileostomy and that's awesome but I knew I wanted to give the J pouch a try since I have two family members with j pouches and I saw how well they turned out.

Ok so is it like having a normal, healthy colon? No, of course not but that wasn't in the cards for me and it's not in the cards for a lot of people unfortunately. And again, this is just MY experience living day to day with a j pouch. I know what a scary thing it is to have to face surgery and it's nice to read positive, real people experiences about it. I did my homework so I knew the risks and anyone considering surgery should get as much accurate info as they can about it. Good and bad. So my sincere best wishes to all that are struggling with this decision right now.
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! :)

Post Edited (ByeByeUC) : 1/5/2012 6:07:58 PM (GMT-7)


Posted By : notsosicklygirl - 1/5/2012 7:23 PM
Since 6x is on the low side for people with a j-pouch, I wonder if people who go a bit more often are up multiple times in the night to empty? Do you know? Is the odor the same as a normal colon? Gross question I know but curious.

Do you pass wind normally? Is there ever a miscalculation with gas and you get more than you bargained for?

What dictates how much you go after surgery? The surgeon? Diet?

Do you avoid any foods knowing it will cause you to have to go a lot?

I bet I will have more questions but I would like to let you know that I appreciate you opening up a thread where we can ask these questions. :)
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis, Laryngopharyngeal Reflux & Migraines. Battling Extreme Exhaustion.
Currently: Asacol (2400mg) + 6mp (50mg) + Pristiq (50mg) + Canasa (1g PM) + cerazette

Posted By : ByeByeUC - 1/5/2012 7:43 PM
Actually the odor is about the same. Many times though I noticed there isn't much odor at all. I guess it depends on what I eat. Not sure about the night time thing with other j pouchers. My sister has a j pouch and she says she doesn't have to get up at night to go. Her j pouch is 20 years old so by now it probably thinks it's a colon! She only goes 3x a day. And from the people I have gotten to know with j pouches, 6x a day is pretty average. Some are less, some are a little more.

Yes, I can pass wind normally. It is easier laying down though. I have one "miscalculation" where I thought it was just gas and a little poo did come out. Not enough to be a disaster. I was actually Christmas day....I was eating way too many goodies so that could have had something to do with it!

Honestly I don't know what dictates how much a person goes. Having a top notch surgeon will definitely help. Just like everyone's UC is different, everyone's j pouch can act differently too. For a lot of people diet has something to do with it but it doesn't seem to be a factor for me.

I don't avoid any foods. I missed out on so much all the years I had UC that I am not depriving myself of anything. Too many sweets will make me go more... I have noticed that.
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! :)

Post Edited (ByeByeUC) : 1/5/2012 6:49:49 PM (GMT-7)


Posted By : Malkavian - 1/5/2012 7:49 PM
I'm glad your surgery turned out so well!

"Her j pouch is 20 years old so by now it probably thinks it's a colon!"
This made me laugh!
Heather, 23 year old grad student
Ulcerative colitis from rectum to mid transverse colon, diagnosed 3/6/2009, symptoms for 2 years beforehand
In remission! <3
Currently on lialda 4x/day, azithioprine 150 mg/day
Allergies: penicillin, sulfa, bee stings, environmental (especially ragweed!), OTC meds as needed

Posted By : notsosicklygirl - 1/5/2012 8:24 PM
Thanks for answering. I don't think one miscalculation is a big deal... lol. It happens to healthy people too. In fact, it happened to my fiance recently and he doesn't have UC. It was hysterical. Of course, I was sympathetic and related.
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis, Laryngopharyngeal Reflux & Migraines. Battling Extreme Exhaustion.
Currently: Asacol (2400mg) + 6mp (50mg) + Pristiq (50mg) + Canasa (1g PM) + cerazette

Posted By : hateuc - 1/5/2012 8:29 PM
Thank you so much. It is good to hear these positive stories. I def. think the surgeon makes a huge difference. I hope more j-pouchers will share their stories. Thanks Marianne!
Proctosigmoiditis
2 Lialda/day  Rowasa nightly
VSL#3
Metamucil wafers

Posted By : Riffy - 1/20/2012 4:47 AM
Hi. I've just been told by surgeon that I can go for the j-pouch surgery (I had a full colectomy injune 2011 and having been living wwith an ileostomy ever since).
I'm very ready to "get back to normal" as its been an emotional roller-coaster since my op, but I've been reading up on what having a J-pouch entails as so far there seems to be alot of cons as opposed to pro's.
I'm scared of the recovery as my recovery from having my colon removed was hellish.
I know that if I opt for this surgery I will be stoma free and no longer live with a colostomy bag, but I'm worried that I will be entering into a life-time of anxieties, such as pouchitis, obstructions, fistulas, infections....the list seems endless.
I'm a 34 year old mum and want to live as normal as life as I can to make sure my little son has the best upbringing.
It was good to read your positive experience Marianne, Thankyou.

Posted By : Disneynut66 - 1/20/2012 6:14 AM
Great post Marianne! I am about 9 months out from take down surgery and am doing well as well. I go on average 6 times a day also, but don't usually have to get up in the middle of the night unless I need to pee. Yes, I can empty on command pretty much, too. I haven't had pouchitis or any obstructions since take down so I think I'm pretty lucky. My biggest complaint is hemmies, but I had those when I had UC, too.

I, too, did a ton of research and made sure I was getting the best care I could find. My surgeon was wonderful.

I eat whatever I want, but plan for it if I eat spicy stuff by taking immodium, pepto and Beano.

Sometimes I still am waiting for the other shoe to drop because I was so used to that having UC, but so far so good. It is definitely not like have a regular colon, but it sure beats having UC.

Oh and take down is SO much easier than the colon removal! Just make sure you have immodium, Metimucal, Beano and Calmoseptine on hand to help you along. The butt cramping from gas was not fun, but mostly goes away in a few weeks.

Post Edited (Disneynut66) : 1/20/2012 5:18:12 AM (GMT-7)


Posted By : sherbear46 - 1/20/2012 7:15 AM
Thanks ByeByeUC for starting this thread. Good information for those considering the surgery route. Makes it less scarey.
Co-Moderator UC

Sheri-39 years old

Diagnosed April 2009-suffered over a year prior to diagnosis

Currently taking Lialda 2 tabs in am, Protonix 40mg every day, Allegra, Zyrtec, Probiotics, Vitamin D3, Melatonin and Rowasa enema once a week.

Currently in Remission since June 2011. I seem to flare yearly Dec/Jan time frame. Hoping this winter to be different since I'm not working.

Posted By : Red_34 - 1/20/2012 8:03 AM
Thanks for sharing your story. If Remicade fails me than surgery is going to be my next step. So it's nice to be able to read of success stories. It makes the whole thing a little more less scary.
SHERRY
Moderator-Allergies/Asthma and Alzheimer's, Co-moderator-UC
Diagnosed Left sided UC in '92 - meds: 6mp, Colazal, Remicade and Bentyl*Unable to tolerate ALL mesalamines*, in '11 diagnosed with IBS, Diverticulosis, Fibromylagia..I also have Sacroiilitis, Scoliosis, Raynauds, OA, PA, Rosacea, Psoriasis, Dry Eye and allergies controlled by Zyrtec and Singular

Posted By : suebear - 1/20/2012 8:27 AM
Thanks Marianne and Disneynut, count me in also as a happy poucher! I'm one month shy of 11 years with my jpouch and it's been the most active and fulfilling 11 years of my life. Thanks to an outstanding surgeon, I got my life back.

As for people reading about the surgery on the internet and finding more cons then pros in regard to this surgery, bear in mind that most jpouchers having problems are posting about it while those of us (in the majority) who are not having problems are out living life. This site, on UC, tends to get more visits from those who are struggling with gaining remission than those that are in remission and doing well. One of the reasons why I stick around on this site, is to dispel the rumors about this surgery. All these rumors were shared with me 12 years ago when I was contemplating surgery and was told by my GI and other well meaning people that jpouch surgery would be a mistake.

One also has to take in consideration that surgery for UC, or life with UC, will never mimic life with a healthy colon. Life with a jpouch is different, but I prefer to see that as more than acceptable since I can eat what I want, take no meds, and not worry about the cycle of illness. Life with UC for me was unpredictable and challenging at times. I like this life, post colon, much better.

Sue

Posted By : Somedude - 1/20/2012 8:35 AM
suebear said...
One also has to take in consideration that surgery for UC, or life with UC, will never mimic life with a healthy colon. Life with a jpouch is different, but I prefer to see that as more than acceptable since I can eat what I want, take no meds, and not worry about the cycle of illness. Life with UC for me was unpredictable and challenging at times. I like this life, post colon, much better.

Sue
 
Could you dwelve more into why life with J pouch will never mimic life with a healthy colon? Apart from the bathrooms trips difference, how does it not mimic. Then you say, you find find it more than acceptable, but not perfect. Would you be able to state the negatives of the operation that you are experiencing now?

Posted By : suebear - 1/20/2012 9:21 AM
Life with a healthy colon means emptying that colon once per day. Life with a jpouch means having higher frequency and for me, getting up at night. That would be my only negative, but it's a trade-off I'm willing to live with.

Sue

Posted By : ByeByeUC - 1/20/2012 10:22 AM
Somedude-
Living with my J pouch pouch will never be like having my healthy colon back but the extra trips to the bathroom really, honestly are not a big deal. As Sue pointed out, it's not a bad trade-off to not be sick anymore (and there is no urgency!). Heck, my hubby has a healthy colon and he goes 3x a day!
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! :)

Posted By : Old Mike - 1/20/2012 1:56 PM
My son does pretty well with his pouch,he is 12 years out now,he was 21 at the time. He adjusts his diet to sweep out bacteria which he feels will overgrow if he does not eat lots of cooked veggies such as squash, he has it for breakfast. He of course goes more often than people with colons,gets up once at night. Has his own business and is married now. Back in 2000 it was lose the colon or die, he decided on a pouch as opposed to more colon rescue drugs that were not working. If you want lots of pouch stories both good and bad go over to www. j-pouch.org ,I still stop by there every so often since my time may come sooner or later.
Old Mike
Glenns Dad

Posted By : Somedude - 1/20/2012 1:59 PM
Old Mike said...
My son does pretty well with his pouch,he is 12 years out now,he was 21 at the time. He adjusts his diet to sweep out bacteria which he feels will overgrow if he does not eat lots of cooked veggies such as squash, he has it for breakfast. He of course goes more often than people with colons,gets up once at night. Has his own business and is married now. Back in 2000 it was lose the colon or die, he decided on a pouch as opposed to more colon rescue drugs that were not working. If you want lots of pouch stories both good and bad go over to www. j-pouch.org ,I still stop by there every so often since my time may come sooner or later.
Old Mike
Glenns Dad
 
What do you mean your time may come sooner or later, you have colon problems like your son did?

Posted By : Disneynut66 - 1/20/2012 2:12 PM
The times I really think about the fact that I have no colon is when I am in a public bathroom. My j-pouch is quite noisy. I didn't know this would be the case when I had the surgery. It's a little embarrassing, but a lot of work people know (I told them that I'm loud because of my lack of colon) and don't follow me into the bathroom, or joke that they won't go in the stall next to me. I have to be more careful when I eat so I don't get butt burn. No real urgency, I can hold it if I need to. I try not to eat too much or I have to go a lot, but this is better for me, I don't need to be eating a lot anyway. That being said, I am going to Chinese Buffet with friends tonight, lol. With UC I would suffer so much afterwards if I went there.

The pros so much outweigh the cons, though. Suebear helped me feel good about my decision so that is why I come back her, to help others like she helped me.
Diagnosed 2006. 1st step of 2 step j-pouch 1/3/11. 2nd step April 4, 2011. So done with this disease.

Posted By : Somedude - 1/20/2012 2:26 PM
Disneynut66 said...
The times I really think about the fact that I have no colon is when I am in a public bathroom. My j-pouch is quite noisy. I didn't know this would be the case when I had the surgery. It's a little embarrassing, but a lot of work people know (I told them that I'm loud because of my lack of colon) and don't follow me into the bathroom, or joke that they won't go in the stall next to me. I have to be more careful when I eat so I don't get butt burn. No real urgency, I can hold it if I need to. I try not to eat too much or I have to go a lot, but this is better for me, I don't need to be eating a lot anyway. That being said, I am going to Chinese Buffet with friends tonight, lol. With UC I would suffer so much afterwards if I went there.

The pros so much outweigh the cons, though. Suebear helped me feel good about my decision so that is why I come back her, to help others like she helped me.
 
Noisy? I think this is open to interpretation. Are you a girl or a guy. I mean some guys in stalls are louder than me with heathly colons(i think)  then me pooping when I'm flaring.
 
And when you say if you eat too much you might have to go alot, how much is alot?

Posted By : summerstorm - 1/20/2012 2:45 PM
I don't have a jpouch I have a permanent ileo (the bag) and I know a lot of people are scared of jpouch because they may end up "stuck" with a bag. I just want everyone to know its not horrible! I have a great life, and actually find the bag more convenient than going the regular way pre uc! In fact one of my friends said she was so jealous she wished she had one too!
Also please don't think you are giving up if you choose surgery! You are choosing getting your life back!
Good luck to everyone!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

Posted By : Disneynut66 - 1/20/2012 9:33 PM
I think I went about 10 times...that's a lot for me. Today I went on a field trip with my special Ed class to McDonalds then went to Chinese buffet for dinner and I still went 6 times, no problems at all.

I'm a woman and so I don't hear the kinds of noises made in the bathroom.

Posted By : uc_free - 1/20/2012 9:56 PM
I second summerstorm! The permanent ileo route is not bad either! I have TONS of energy these days, and my friends are telling me I look better than ever. As each day passes I am growing more and more postive about my decision.
Diagnosed with pancolitis in 1998
Tried everything but Remicade over a 14 year period and Imuran was really the only drug that worked before it stopped in 2010
Flared for a year and a half before spiraling out of control
Proctocolectomy with permanent ileostomy 11/29/11
Finally on the road to recovery

Posted By : ThePostmodernIrony - 1/21/2012 1:51 PM
I have been considering it and these comments are very helpful. Right now we are doing last ditch remicade effort. I know it is mostly females that have responded but my one concern is the possibility of sexual dysfunction in males. I just got engaged and my fiancé knows all about my health issues but I think if I no longer 'worked' because of a decision I made I would feel like I am taking something away from her - even though I know she supports me and wants what's best. Any thoughts?
UC diagnosed Jan. 05
Past Meds: Azasan (Imuran) - dicyclomine, Remicade -7x, allergy shots (03-07), levbid, prednisone (off since nov. 08!), astelin, hydrocortisone
Current: Asacol 3x3, rowasa/canasa alt, Azathioprine 150mg, Konsyl, Iron 3x, Multivitamin, Fosamax, Aciphex, Citrical 3x, Probiotic, Aloe Vera Juice

Posted By : Somedude - 1/21/2012 2:00 PM
ThePostmodernIrony said...
I have been considering it and these comments are very helpful. Right now we are doing last ditch remicade effort. I know it is mostly females that have responded but my one concern is the possibility of sexual dysfunction in males. I just got engaged and my fiancé knows all about my health issues but I think if I no longer 'worked' because of a decision I made I would feel like I am taking something away from her - even though I know she supports me and wants what's best. Any thoughts?


from what I read on jpouch.org, there's a 10% possibility of erectile dysfunction, either permanent or temporary. Although, maybe my facts are wrong, there's a thread there about a guy complaining he can't get it up anymore.

You could go on the ostomy forum here and ask this guy Chevy something. He has a J pouch, you could ask him if he has problems getting it up.

I wanna know too, cause I'm a guy, and I'm kinda scared too.

Post Edited (Somedude) : 1/21/2012 1:03:49 PM (GMT-7)


Posted By : ByeByeUC - 1/21/2012 2:45 PM
Somedude and PostmodernIrony-
Go to jpouch.org and there is a Men's health forum there. You can ask there and get some input on that subject. Can't help you guys with that one sorry!
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! :)

Posted By : tournevice - 1/21/2012 4:42 PM
I always said to myself I would never end up with a bag.. it felt for me like a failure.
I'm far from it being only on rectal meds.
However I have to say that I read many posts on here where members share their experience with the pouch.

And to be honest I changed my mind. It doesnt sound easy but what I got from those posts are the "life back" thingy. It seems like a much more peaceful experience and overall good results. Far from failure!
I don't see it anymore as something that at the end got wrong but more like after a while with UC lets go this route to make it better.

Really thanks im not in that fear anymore.

Posted By : betsaronie - 1/23/2012 9:46 PM
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!

Posted By : ByeByeUC - 1/24/2012 9:19 AM
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! :)

Posted By : Somedude - 1/24/2012 9:47 AM
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?

Posted By : Kerri1268 - 2/3/2012 2:42 PM
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!

Posted By : Kerri1268 - 2/3/2012 2:43 PM
By the way 53rd&3rd, your tone sounds very familiar.

Posted By : susans53 - 2/3/2012 5:55 PM
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

Posted By : susans53 - 2/3/2012 7:17 PM
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)


Posted By : LooRunner2015 - 11/29/2015 11:14 PM
Thank you so very much for this post, I have been looking at all my options and this Helps

Posted By : NiceCupOfTea - 11/30/2015 4:51 AM
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)


Posted By : susans53 - 11/30/2015 7:10 AM
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

Posted By : NiceCupOfTea - 11/30/2015 7:29 AM
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.

Posted By : susans53 - 11/30/2015 8:40 AM
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)


Posted By : ByeByeUC - 11/30/2015 10:37 AM
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

Posted By : NiceCupOfTea - 11/30/2015 12:10 PM
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.

Posted By : susans53 - 11/30/2015 3:07 PM
It's ok and thank you.

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


Posted By : VinniesMom - 12/1/2015 2:49 PM
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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