Another question for j-pouchers re. lifestyle

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Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 1/22/2009 8:31 AM (GMT -6)   
I am spending more time at jpouch.org again and getting some amazing answers, but feel this sort of question is a bit condescending at that site so I'll ask it here, knowing there are a few of you here who are j-pouchers and are apparently doing great.  I just saw a post by someone over there who casually mentions that she cannot eat after 3 pm, otherwise she is running to the bathroom several times during the night.  Responses to her, equally casually, advised her to double up on immodium in the evening.  Either way it sounds gruesome.  Is this typical?  If j-pouch lifestyle for most is nothing more than poohing (emptying pouch) comfortably and easily whenever you pee, what is all this business about loading up on the immodium and timing meals etc anytime you need to leave the house (which sounds more like UC flare life)? 
 


Pancolitis ~20 years, once had a full med-free 10 year remission,
but flaring/simmering on and off for years, allergic to all 5ASAs
12.5ish mg pred, 100 mg Imuran TCM
Probiotics (PD, Cust.Probiot., Culturelle, VSL3, etc), DMSO, TSO, hookworm
Turmeric/circuminboswellia, fish oil, many vits/minerals
Lower-carb version of Specific Carb Diet (SCD), Remicade
 
 
 


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 1/22/2009 8:53 AM (GMT -6)   
Like this site, the jpouch.org site has it's fair share of members who only visit because they are having problems or they are seeking support for pre or post op surgery. Most jpouchers are out living life just like most UCers don't visit this site because they are in remission and out living life. Like you, I was kind of surprised at that woman's statement as were many of her respondents. I regularly meet with a bunch of jpouchers for lunch or dinner. None of us alter our menu selections or meal times based on our pouch. Sure, for some pouchers some foods lead to butt burn but most all of them state that they do not avoid those foods they just plan for them. I can't relate as I have never had butt burn. Living with a pouch, even at its worst, is no where like living with UC!! As I have mentioned a gazillion times, I am fine. I felt disabled with UC; I compromised with UC, I postponed life with UC. With a jpouch I have been able to regularly engage in 100-200 international hikes, backpacked, hiked a continious 80 miles on the John Muir trail in the Sierras while camping along the way. I could not have done these activities with the unpredictability of UC but I can do them now because the jpouch is predictable. Not to mention I am healthy and drug free. For some pouchers they continue to take imodium or lomotil. I choose not to unless I am engaging in multi day strenuous exercise like long distance hiking. When you are hiking 8 hours in a day your motility is kicked up and frequency increases. I take lomotil on these days to counter that.

There is no perfect surgery for UC. All choices come with pros and cons. I chose to have surgery because drugs no longer worked for me and I was scared of the long term side effects of prednisone as I was pred dependent. I studied my options and talked with those that had each surgery type. I came close to getting a BCIR but then realized that it was more high maintenance than I wanted to manage. I am often in areas with no potable water, or backpacking, and that option didn't work for my lifestyle. Because you have UC you will never have a perfect colon again. You have learned to compromise with UC and if you have surgery you will continue to have to compromise but in a different way. For me the compromises with a jpouch far outweigh living with UC. I frequently write both my surgeon and my GI to let them know how thankful I am that this option exists and thank my surgeon, especially, for giving me my life back. Not only am I healthy, active, and happy, but I no longer obsess over bathroom locations, my butt, or the reasons why I got UC or the cause of UC, or the cure for UC.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 1/22/2009 9:00 AM (GMT -6)   
Ya know, I can't answer you, but I understand exactly where you're coming from- I too spent a lot of time on jpouch.org & also the ostomy forum here. I was dumbstruck by the amount of people posting on the jpouch forums who have to still take meds ranging from prednisone to Remicade, who take Immodium daily, who alter their diet due to numerous bm's, pouchitis & chronic antibiotic use, etc. Sounds like my UC life! Now I know that people claim that the posters are having issues, & it is not the norm. However, I post on this forum practically daily, without having had serious "problems" in quite a long time. Soooo.... I wonder! My fear is that if I opt for jpouch surgery, I will be one of the lucky folks who still has major issues with frequency, pouchitis, medications....I'm one of those "Murphys Law" types when it comes to my health- if it can go wrong, it will! That's why, when I did have surgery scheduled, it was for a total proctocolectomy with a perm ileo. My husband & I have discussed this at great length- he feels that a jpouch is like a purgatory of sorts, not quite "healed", not quite sick. Which surprised the hell out of me! With a permanent ileostomy, these issues are nonexistent. I wonder too, if the jpouch will remain as popular as it currently is- when I met with the ENT/Stoma nurses, they asked me why I was opting for an ileo- I told them that #1, I did not want to ever deal with the potential problems that can occur with a jpouch, & that #2- if I was going to undergo serious surgeries, I wanted to be "cured" completely- no meds, no pouchitis, no issues with leakage. The nurses said "Very smart! Excellent choice, we agree, etc." The surgeon I met with asked me the same thing- he said the majority of peopole opt for the jpouch- when I gave him my answers he concurred too. Your question is good, because I think many people wonder the same thing- it's important to remember though, that an ileostomy is STILL considered the "gold standard" in UC surgery, not the jpouch. You also have to remember that the SOLE reason one gets a jpouch is aesthetic- there is absolutely no medical advantage whatsoever, & as you are finding, it can be a disadvantage to many. Just food for thought, ya know? I'm not saying anyone who gets a jpouch is foolish, not by any means- it's just that for me personally, the chances of serious complications with a pouch are too high for me. If in fact I do wind up with surgery, I'm going perm ileo all the way. The bag is no big deal, when all is said & done.

PS- Sue, what made you decide to try the pouch as opposed to an ileo? I imagine when you had your surgery, the pouch surgery was in it's infancy. Just out of curiosity!


diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 1/22/2009 9:10 AM (GMT -6)   
Eva Lou,

I discounted the permanent ileo for the same reasons I discounted the BCIR. My activities of backpacking and being in areas of no potable water discouraged me. I felt I would have to give up the things I love and I didn't want to do that.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 1/22/2009 10:50 AM (GMT -6)   
Thanks for both your responses. Sue- I really commend you for posting so much here in such a detailed fashion, over and over again to those on the other side. It is certainly good to know that there are stunning success stories with the j-pouch that one would barely know of otherwise, since most of you types just disappear and live normal (well, as normal as can be poohing when peeing) lives. The GI's do still describe the j-pouch as the gold standard, but it does seem to me, as Eva Lou says, that many people are just moving to a new potential time bomb (pouchitis or pouch failure or just general unacceptable frequency and discomfort). But I must say, I am, like Sue, very much into the outdoors- hiking, biking, tennis, extensive and constant travel for work and pleasure, etc. ... and I would love not to deal with bag hygiene issues as well as the encumbrance of that thing swinging around or strapped in using some sort of special waist band when I am doing rigorous activities. So I am probably going to end up going for the jpouch- hoping for the best and, if it turns out unsatisfactory, back to the knife. Nothing to do with aesthetics in my case though. A lot of food for thought.  Can anyone comment on whether going to a permanent ileo after a failed pouch makes for a less efefctive ileo than going for a permanent ileo from the get go?  I.e. does all that extra surgery (quite apart from the pain and recovery involved, risks of infectiions, etc which are all frightening enough) take a toll on the quality of a reversal?
 
Pancolitis ~20 years, once had a full med-free 10 year remission,
but flaring/simmering on and off for years, allergic to all 5ASAs
12.5ish mg pred, 100 mg Imuran TCM
Probiotics (PD, Cust.Probiot., Culturelle, VSL3, etc), DMSO, TSO, hookworm
Turmeric/circuminboswellia, fish oil, many vits/minerals
Lower-carb version of Specific Carb Diet (SCD), Remicade
 
 
 

Post Edited (Probiotic) : 1/22/2009 9:53:44 AM (GMT-7)


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 1/22/2009 11:15 AM (GMT -6)   
You can have a totally perfect end-ileo if your pouch fails and you need additional surgery. There is plenty of small intestine to provide for this if needed.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


soccermom3
Regular Member


Date Joined Aug 2007
Total Posts : 38
   Posted 1/22/2009 11:39 AM (GMT -6)   
I agree with Sue - you can ALWAYS go back to a perm end ileo if needed. But I would NEVER go straight for a bag.  I only had my bag for 6 weeks - it was the absolute worst 6 weeks of my life.  I was terribly self conscious, it leaked all the time and my skin underneath looked like hamburger meat.  I cannot image living my entire life with a bag.  I know that some people do well and enjoy a bag, but I highly recommend at least trying the jpouch.  I am about 5 months post takedown.  For the most part, I feel very good.  I really don't watch what I eat and I do not take ANY medications!!!  Now, I have had some complications with blockages - but those can happen with an ileo too.  I am totally happy with my jpouch - I just wish I had done it sooner.

Diagnosed Pancolitis 5/05.
 
9/8/08 - Complete Obstruction - resolved w/ 4 days of a NG tube
8/19/08 - Reversal
7/3/08 - Step 1 of 2 step J pouch
Hospitalized 5/08 Severe Flare
Hospitalized 2/08 Severe Flare
Hospitalized 3/06 Severe Flare


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 1/22/2009 12:06 PM (GMT -6)   
Well, I do understand that it is like night and day comparing a permanent ostomy to the temp one between pouch surgeries, but yeah- I do hope I can try the jpouch first and simply reverse it if I am one of the "lucky" ones to have trouble with it. Congrats and best of luck on your continuing success and adjustment to the pouch!


Pancolitis ~20 years, once had a full med-free 10 year remission,
but flaring/simmering on and off for years, allergic to all 5ASAs
12.5ish mg pred, 100 mg Imuran TCM
Probiotics (PD, Cust.Probiot., Culturelle, VSL3, etc), DMSO, TSO, hookworm
Turmeric/circuminboswellia, fish oil, many vits/minerals
Lower-carb version of Specific Carb Diet (SCD), Remicade
 
 
 

Post Edited (Probiotic) : 1/22/2009 4:29:19 PM (GMT-7)


Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 1/22/2009 1:13 PM (GMT -6)   

My daughter had her j-pouch takedown in November. She had maybe 2 weeks of some sort of butt burn. We think it was more because she had so little in her stomach during that time (she was not one of those who ate like she never ate before because she was healthy). Since then the only thing she finds that causes irritation is Italian sauce (pizza is fine luckily). She still eats Italian food but not late at night and not if she has something important the next day. Why feel uncomfortable.

She is back at school loving senior year. You can see how this surgery lifted a big weight off her shoulders. She is not constantly thinking about where the next bathroom is, when she will flare again. She just went for her recheck with the surgeon and can eat anything she wants. Fruits, veggies, whatever. She goes back in June/July for her pouchoscopy. She will have to see him once a year around the anniversary of her first surgery for that.

She is on NO MEDS. No immodium, no lomitil, nothing. Her schedule doesn't always allow her to have meals at normal times. She can have dinner at 6 one night and 9 the next night. She may get up once more in the middle of the night to use the bathroom if she eats late, but it doesn't affect her. It's like getting up to take a quick pee (which she does anyway). Her mornings no longer consist of 2+ hours of bathroom time in hopes of feeling OK during the day. I can wake her up at 6 am for her 6:35 bus!

This was a hard decision to make for her (and us). She's only 17. But she is very happy she had surgery.
We never considered a permanent ileostomy. We know that, if necessary, she can go to that. But it was worth the j-pouch surgery for her.


--Mom of bratcat (17 years old) and nonamejames (20 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Flared Fall 2006, Fall 2007, Spring 2008
Asacol, Rowasa, hydrocortisone enemas, prednisone, 6-mp, Remicade
7/3/08-Step 1 j-pouch surgery and no more meds!
11/10/08-Step 2 reconnect!
 
Son nonamejames was diagnosed with Crohns in Spring 2008
Asacol, Pentasa, 6-mp


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 1/22/2009 5:32 PM (GMT -6)   
Bennie- that is fantastic- I'm very happy for Bratcat and I hope she continues to blossom with her new life with the jpouch- and thanks for the encouraging news.
Pancolitis ~20 years, once had a full med-free 10 year remission,
but flaring/simmering on and off for years, allergic to all 5ASAs
12.5ish mg pred, 100 mg Imuran TCM
Probiotics (PD, Cust.Probiot., Culturelle, VSL3, etc), DMSO, TSO, hookworm
Turmeric/circuminboswellia, fish oil, many vits/minerals
Lower-carb version of Specific Carb Diet (SCD), Remicade
 
 
 


Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 1/22/2009 6:35 PM (GMT -6)   
My Dad has a J-pouch, and has been flaring with his UC, a while ago the doctor's are talking about giving a permanent ileostomy. I think that was the beginning of last year. Hasn't happened yet.
26 year old, Married, Female.
Diagnosed with UC since March 2007

Taking Humira and Imuran since May 2007 (Currently in remission since May 2007)
Taken off Imuran 1/15/09
Only taking Humira.

Can't take Asacol, Allergic to Remicade


Y2K Bug
Regular Member


Date Joined Jul 2008
Total Posts : 114
   Posted 1/22/2009 8:05 PM (GMT -6)   
In australia, surgery is quite accessible and compared to the US, I think cheap. Insurance is personal, so it doesn't matter if you change jobs or not, you still have the insurance that you want and that you pay for (i have the top hospital cover for a family - 2 adults and as many children under 18 as you have and it costs about $AUD2500 a year). So cost wasn't a factor when i decided on the J-pouch. And I would rather decide that the J-pouch wasn't working than go to a permanent ileostomy first.
 
Yesterday, the secretary at the department that i work at was giving a farewell speech - i was outside the main hall but the doors were open. My stoma decided to give a farewell speech of its own. Can't wait to get rid of the bag!
Peter
 
dx 1985
prednisolone 9mg tapering
gave up on meds after infliximab (remicade), humira, salofalk (5-asa enema), entocort, Azathioprine, steroid emenas, abadacept
 
have temp ileostomy, reversal probably in Mar/Apr 2009.
 
and I don't know where the nearest toilet is!


tbraz
Regular Member


Date Joined Jul 2007
Total Posts : 280
   Posted 1/22/2009 9:49 PM (GMT -6)   
I think that you are doing everything correctly, you are getting knowledge (both good and bad) for your options. And it seems like a roll of the dice really, if you are one of the lucky ones, you will have no issues with a pouch just as some have no complications from a surgery while others do.

I was pretty much told that I had to have the surgery and that I was a candidate for the j-pouch and the surgery itself would "cure" me. Nothing was ever said about butt burn, pouchitis, leakage, and when you are going through it you feel like "this is a cure?" With that said, the butt burn gets better and I can now eat everything, and pouchitis/leakage is under control with antibiotics (hopefully temporary). As I did with UC trying every medication, I thought that I can try the pouch and if it didn't work out I can always go to the ileostomy.

I saw that other thread too and don't agree, I take 2-3 Immodium before bed and I will eat up to 9:00pm and go to bed at 10:00. I almost always sleep through the night. I don't take any during the day or before I go out, I am not afraid to eat and then go somewhere. I do not have to RUN to the bathroom and probably go about 4 times a day and sleep through the night and live a normal life, so in the end I would say it was worth it. 100% Successful? Maybe not. But nothing compared to UC.

Keep doing your research and good luck with whatever decision you make.

turn
Theresa

Originally diagnosed with CD in 1991
Now saying "Undetermined Colitis"
3 step Jpoucher as of 4-15-08

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