Questions for J Pouchers

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benjwl123
Regular Member


Date Joined Dec 2008
Total Posts : 21
   Posted 2/28/2009 10:54 PM (GMT -6)   
I have some questions about the J pouch surgery that my surgeon scared me half to death about.

1) Am I really going to have 5-12 Bowl Movements per day? What was your experience with this.

2) How often did you end up in the hospital with dehydration since your large bowl was out? I know there is a lifetime risk with this and I have to be attached to a water bottle with gatorade at all times.

3) The doc said that UC can turn to Crohn's.  Has this happened to anyone?

4) Did you have nighttime soilage?

5) Since the stool is never formed, do you have to live with urgency anyway and stilll need to know where a bathroom is or do you have more control than you did with the diarreah caused by your disese.
 
It seems that there are more cons with the pouch than the ostomy bag which I have as of 1/8/09 after cyclosporine failed to save my colon. I know you feel differently about this but I feel like I will be symptomatic like I was when I was sick with the frequency issue. I am so anxious and feel so frustrated with all this crap that goes along with this disease. I am glad to have someone to talk to that has gone through these issues. Thanks for your advice.
 

 
Diagnosed with UC since 1999
Current Meds:
 
Sulfasalizine 500 mg tabs 2x's daily
Rowasa enema 2x's daily
Colocort Enema 1x daily
Prednisone during active flares
Imuran 6 months in 2006 (Joint Pain) Stopped
Florastor Probiotoic
Bentyl for cramping
 


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 2/28/2009 11:05 PM (GMT -6)   
I asked questions on j-pouch.com...everyone there does have a j-pouch or is going through the process. I actually opted for a permanent ileo prior to my proctocolectomy b/c of the many cons with the j-pouch. I just wanted to be done and over with any problems and get on with my life. I haven't regretted my decision once. : )
: )  Robin
 
28 year old Mommy of an amazing 1 year old and Wife for 2 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
 
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!
 
"Your mind is like a parachute, it only works when it is open."  -Unknown


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 3/1/2009 8:54 AM (GMT -6)   
 
 
1) Am I really going to have 5-12 Bowl Movements per day? What was your experience with this.
 
After your recovery it's more like 6-8 in a 24 hour period.  But it's in no way like having a bowel movement with a colon.  It's as simple and quick as urinating.  How many times do you urinate in a day?  I bet you don't know and either do I but every time I have to pee I empty my pouch.

2) How often did you end up in the hospital with dehydration since your large bowl was out? I know there is a lifetime risk with this and I have to be attached to a water bottle with gatorade at all times.
 
In the 8 years with my jpouch I have never been hospitalized for dehydration.  Some find they drink more post surgery but I don't. The only time I use electrolyte beverages is during extreme exercise, 100-200 mile hikes, or packing in and out of the Grand Canyon where temperatures are extreme.  There are much better hydrating beverages than Gatorade and if you opt for a jpouch or an ostomy I would recommend you switch.

3) The doc said that UC can turn to Crohn's.  Has this happened to anyone?
 
UC never turns into Crohn's.  If you are later diagnosed with Crohn's it means your UC diagnosis was incorrect.  There is not 100% definitive test to differentiate between the two.

4) Did you have nighttime soilage?
 
For a few weeks post surgery I had a bit of this but it resolved itself and I don't have it anymore.

5) Since the stool is never formed, do you have to live with urgency anyway and stilll need to know where a bathroom is or do you have more control than you did with the diarreah caused by your disese.
 
Stool with a jpouch is formed!  I do not have diarrhea!  This is a comon misconception and even my GI thought I would have permanent diarrhea!!  WRONG!  Some foods, like lots of sugar, can make things looser but most of the time my stool is formed.  I eat tons of fresh fruit which helps with bulking.   I NEVER have to know where the bathrooms are, what freedom that is!  I never have urgency.
 
 
It seems that there are more cons with the pouch than the ostomy bag which I have as of 1/8/09 after cyclosporine failed to save my colon. I know you feel differently about this but I feel like I will be symptomatic like I was when I was sick with the frequency issue. I am so anxious and feel so frustrated with all this crap that goes along with this disease. I am glad to have someone to talk to that has gone through these issues. Thanks for your advice.
 
There are pros and cons with every surgery for UC.  But 90-95% of those who opted for jpouches are happy. You need to write  down the pros and cons and decide for yourself which is the best option.  For me preserving my ability to backpack and hike were TOPS on my list.  I couldn't do those things with an ostomy.  Also the expense of an ostomy was considered.  Supplies are expensive and take up lots of room when traveling for long periods of time which I do.  Those are my reasons for opting for a jpouch.  Again though, there is no PERFECT surgery but there is a surgical choice that best fits you!
 
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


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 3/2/2009 2:32 PM (GMT -6)   
I'm sorry... it's j-pouch.org

: )
: )  Robin
 
28 year old Mommy of an amazing 1 year old and Wife for 2 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
 
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!
 
"Your mind is like a parachute, it only works when it is open."  -Unknown


benjwl123
Regular Member


Date Joined Dec 2008
Total Posts : 21
   Posted 3/3/2009 9:58 PM (GMT -6)   
 
RobinByrd
 
Thanks for the reference.  I am a 32 yr old Mother of 2 and also a wife of 6 years.  It is nice to see someone so young like myself accept the Ostomy which I am having a hard time doing.  However, anything beats the 5 week hospital stay prior to having to have my entire colon removed.
 
 
suebear
 
Thanks for answering my questions based on your experience.. I am not sure how many times a day I pee but I might just start keeping track so I can see if the pouch will be as big of an inconvience as I am thinking.
I am glad to hear a success story which gives me hope that it may not be as bad as the literature makes it sound.  I still have 7 weeks to decide before I am back on the table getting the last foot of colon removed. 
 
Wendy
Diagnosed with UC since 1999
Current Meds:
 
Sulfasalizine 500 mg tabs 2x's daily
Rowasa enema 2x's daily
Colocort Enema 1x daily
Prednisone during active flares
Imuran 6 months in 2006 (Joint Pain) Stopped
Florastor Probiotoic
Bentyl for cramping
 


Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 3/3/2009 10:40 PM (GMT -6)   

Hi. My daughter had step 1 in July and the reconnect with her j-pouch in November.
For her, the j-pouch has been great. Like Suebear said, my daughter doesn't count the number of times she goes to the bathroom. She pees, she generally (not always) poops. But she isn't in the bathroom very long. Nor does she have any urgency. She may know she has to go to the bathroom but can comfortably hold it for several hours if necessary. She doesn't need to worry about looking for where the bathroom is everywhere she goes.

She has no problems with dehydration. In fact, she probably had to be more concerned while she had her ostomy. She is naturally a big seltzer drinker (hates water and gatorade). She continued drinking seltzer with her ostomy and now with her j-pouch. The bubbles don't bother her.

When she first came home from the hospital after her reconnect, she had a few small "oops". Meaning she didn't quite get to the bathroom in time. She never had any big messes. And that, along with any real butt burn, stopped within the first 2 weeks. I think her body adjusted to its new plumbing. The butt burn stopped when she began to eat enough and the bile wasn't the cause anymore. Now she eats mostly what she wants. She knows that too many days of Italian food (mostly sauce) will irritate her bottom. But it doesn't stop her from eating it! It's just that she is aware and can choose to decide to eat or not it depending on what she has planned the next day!

She does not have urgency. Some foods will make her movements more formed (not completely but not diarrhea). Pasta bulks her up a bit. She has lots of control over her bowel movements. She knows she has to go but can wait until she is ready and not run for the bathroom. Plus she is in there once not several times in a row.

The decision for surgery is a very personal one. As is a permanent ostomy versus a
j-pouch. For my daughter, this was the right decision. She is happy, healthy, and having a wonderful senior year. She is enjoying life as a 17 year old should.


--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


malachy72
Regular Member


Date Joined Oct 2005
Total Posts : 99
   Posted 3/4/2009 12:08 AM (GMT -6)   
I'll echo a plus for the j-pouch. Everything that Suebear and Bennie has said is my story as well.

You should know that an ostomy bag will have to be emptied constantly as well. There is no reason that I can see that if the j-pouch didn't meet your expectations you couldn't go to the bag.

RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 3/4/2009 1:00 AM (GMT -6)   
I agree...many people are very pleased with their j-pouch, and there are so many success stories. I learned of many wonderful people and how great their lives are since receiving their j-pouch at j-pouch.org.

You're right, surgery is such a personal decision. It's also a very scary and life changing decision. You need to really think about what it going to be the best for with your and listen to your heart. I followed mine, and my personal decision was to have the pemanent ileo, and I did have great reservations at first b/c making this deicion permanent was HUGE! However, when I thought about all that I had been through in the short two years, it just seemed logical for me to get to be done with going poo! : )

Having the ileo is not bad at all. The first week was the most difficult, but I had tried to prepare myself for the new responsibility. I had my surgery four weeks ago this upcoming Friday and I feel that the emptying of my accessory (that's what I call my pouch system) is no biggy at all! I had a mishaps today at Wal-Mart with my M9 odor eliminator (I posted it on the ostomy board) and it does take some getting used to, but overall I've adjusted very well.

I will be honest though, some people just are not cut out to have the permanent ileo. Some are very anxious for their reversal surgery. I support everyone's decision...it's whatever is going to make you the happiest and most the most comfortable. Many people questioned my decision and wanted to make sure I wasn't being irrational. I knew what my heart said and I know what I wanted. : )

This is very scary because there is so many 'unknowns' in this situation!!!

Please keep asking questions and everyone on the ostomy board is seriously amazing!!! As are those at j-pouch.org I think I said .com earlier...so I recant that statement...it's .org
: )  Robin
 
28 year old Mommy of an amazing 1 year old and Wife for 2 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
 
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!
 
"Your mind is like a parachute, it only works when it is open."  -Unknown


benjwl123
Regular Member


Date Joined Dec 2008
Total Posts : 21
   Posted 3/6/2009 10:07 PM (GMT -6)   
Bennie,
 
I am glad to hear that your daughter can live life as a normal 17 year old and that she has had a positive experience from the J pouch.  It gives me hope to hear success stories., So far there has been mostly good feedback from this site and Jpouch.org.  All of this feedback has really eased my mind as I have been torn between what is right for me and my lifestyle. 
 
I also think it is great that you have sought out a support network as you have been involved with your daughters illness and recovery.  It is a hard disease for the person going through it but as I learned from my husband, it is also just as hard for those who love you, to deal with it too. 
 
 
Thanks to everyone for responding and helping me in my battle of Ostomy vs J Pouch.  To be continued....April 22nd is my surgery so I will let everyone know how it goes.
Diagnosed with UC since 1999
Current Meds:
 
Sulfasalizine 500 mg tabs 2x's daily
Rowasa enema 2x's daily
Colocort Enema 1x daily
Prednisone during active flares
Imuran 6 months in 2006 (Joint Pain) Stopped
Florastor Probiotoic
Bentyl for cramping
 


nc_bri
Regular Member


Date Joined Dec 2008
Total Posts : 20
   Posted 3/11/2009 2:12 PM (GMT -6)   
Hey Sue- you mentioned hiking, and I just wondered about hiking with the surgery. Can you take longer hikes with a j-pouch? If you have to go every 2 hours or so (6-8 times per day), can you hike without being near facilities? I'm tempted at times to have the surgery, and kiss all the meds and waiting for a flare to pop up goodbye! I do love hiking and have an active life, and just wondered how that would work with a pouch. Thanks.

suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 3/11/2009 2:46 PM (GMT -6)   
With a pouch I have done 100-200 mile international hikes with no problem. Typically hikes of this length mean I am actually hiking in the area of 8-9 hours per day. On these hikes I do take 2 lomotil after every meal. It helps to keep frequency in check. I also did an 80 mile section on the John Muir trail this past year which resulted in elevation gains and losses of 28,000 feet with no problem. This included tent camping too!

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


nc_bri
Regular Member


Date Joined Dec 2008
Total Posts : 20
   Posted 3/11/2009 4:43 PM (GMT -6)   
Wow- sounds great! So you find that you can hold it for 8-9 hours if need be? I've heard that the Muir trail is amazing.

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 3/11/2009 4:48 PM (GMT -6)   
Sue and Bennie, I am nowhere near needing surgery, but I am very glad that both of you post here and relate your (daughter's) experience. It helps knowing that if I do have to have surgery, the outlook is quite good! I kind of wonder if I'd just chose to have the surgery before I'd chose some of the more heavy-duty drugs with potentially nasty side effects....
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, Culturelle probiotic, and Zoloft (25 mg).


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 3/11/2009 6:58 PM (GMT -6)   

Typically in an 8-9 mile hike I will empty my jpouch once or twice but I will stop to pee about 3 times, so it is usually at one of the pee stops that I realize the pouch needs emptying too.  Remember, everyone, colon or not, who hikes 8-9 hours straight will need to stop to relieve themselves in the woods!

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

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