j-pouch ?'s for Suebear

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candyland
Regular Member


Date Joined Nov 2007
Total Posts : 98
   Posted 4/10/2008 5:11 PM (GMT -6)   
Hi Sue,
I'm scheduled to have my TD (part 2 of my 2-step) on May 9th. I finally got up the nerve to schedule it. I've felt so healthy since getting rid of my nasty colon in October that, despite all the things I don't like about the bag, I've put off the 2nd surgery - even tho the j-pouch is there and ready to go. I have so many questions about using my j-pouch! I made an appt. to consult with my surgeon next week since it's been so long since we talked, but I want as much information as I can get before then.
 
1.  My biggest fear.... will I be able to control bm's?  At first and later on?
2.  What can I expect at first (in the hospital) and then later on?
3.  Are there urges and are they strong or painful?
4.  Is there still a mucous problem?
5.  Leaks?  Will I have to wear pads forever? (and please, Lord, never adult diapers again!)
6.  Food and drink issues? Will I have to remember to chew thoroughly still? Salads ever again? Alcohol? Soda? Can food still cause blockage?
7.  My GI said there's a good chance I'll develop pouchitis - how will I know if that happens?
8.  Weird question, but....smells?  My temp ileostomy hardly smells bad anymore (usually smells like whatever I ate) and I wondered if not having a colon will change the smell of the stool coming from the j-pouch. Especially since I know there are several stools a day and I'll be back at work. I'm scared that it will be like before with the UC.
 
Sorry for all the questions.  I have visited j-pouch.org several times, but haven't logged on yet. A lot of those folks have had terrible problems with their pouches and it makes me nervous to read their posts.  I realize they are just a small percentage and that the success rate is much better.  That's why I wanted to ask you! :-)  

candyland
Regular Member


Date Joined Nov 2007
Total Posts : 98
   Posted 4/13/2008 9:03 AM (GMT -6)   
.....or anyone else who has had a successful j-pouch surgery? I'm stressing over this (and a few other things in my life) to the point of getting migraines.  Any advice would be greatly appreciated.  Thanks!

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 4/13/2008 9:48 AM (GMT -6)   

 

Here we go:

1.  Yes, you will be able to control your bms.  You might have urgency in the early days but it will improve.  Expect improvement in 6 week increments and be patient with the process.  Your small intestine has to learn how to behave like a colon.  It takes time.

2.  You should have minimal pain from the 2-step.  Be sure to get up and walk.  Take some creams (desitin, balmex, calmospetine) to the hospital with you.  I took a variety to find the ones I liked best.  Expect high frequency in the early days.  I think in the hosptial and at home in the first six weeks my frequency averaged between 12-22 times per day.  However, there was no pain and very little urgency.  Everyone is different so your experience may be better than mine.  Again, I cannot stress the importance of being patient.

3.  I rarely have urges and when I do I have minor discomfort.  Yesterday was a good example.  I was on an 8 mile hike and about an hour away from the car I needed to empty my pouch.  I really did not want to stop because I was lazy.  So yes, I had a bit of discomfort but at my own cause and expense.  Normally you can hold it for an hour or so until you are ready. It might not be that way right out of surgery but you will get there.

4.  Mucus is an ocassional sight but not like with UC.  It's just the shedding of cells and nothing to be concerned with.

5.  No, you most likely won't have leakage but if you do remember it's normal in the first few months of recovery.

6.  The early days you might want to concentrate on eating foods that provide bulk.  Rice, oatmeal, bananas, etc.  Try foods out and see how you feel.  After my first six months I was able to eat anything.  Actually I could eat anything from the get go but some foods raced through me so I waited.  Today I live mostly on fresh fruits and vegetables, my preferred diet.  It causes me no problems.  Sodas and coffee will not be a problem, I don't drink alcohol but I can't imagine it being a problem since I know so many pouchers who do drink.  Just remember if something doesn't agree with you try it again in 2 weeks.  There are no foods or beverages that I cannot eat.

7.  My GI also said I would get pouchitis but it's been 7 years and I haven't had it yet.  My understanding is that one gets flu-like symptoms.  Fever, high frequency, and foamy bowel movements. 

8.  My bowel movements don't often smell unless I eat garlic or onions or some other smelly food.  My gas is odorless which comes in handy in public!

I know that you have gotten used to your ostomy and it's given you freedom.  Having takedown will be challenging because it's not going to be easy to deal with the adaption.  Focus on long term and remember recovery is 2 steps forward and one step backwards.  I continued to live a full life in my first year.  I went camping at 6 weeks post surgery, traveled through Europe at 3 months, and did a half marathon at 6 months.  Don't stop living just be prepared.

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


candyland
Regular Member


Date Joined Nov 2007
Total Posts : 98
   Posted 4/13/2008 7:09 PM (GMT -6)   

Sue,

Thank you for your voice of experience!!  Patience isn't one of my best qualities, but I promise to remember it gets better. I will definitely take the Desitin and A&D ointment to the hospital with me.  I can't believe how much I'm dreading using my bottom again! :-)   You're so nice to share your story and words of encouragement.  Can't tell you how much I appreciate it!  THANK YOU!!!  -Laura


sfgiantsjo
Regular Member


Date Joined Feb 2007
Total Posts : 420
   Posted 4/13/2008 8:42 PM (GMT -6)   

Sue - Thanks for those answers! They will help me as well.

 

Candyland - I hope you can keep me posted on your journey - I am scheduled for Step 2 of 3 on May 30th, and have so many of the same questions - I'd love to hear how things actually work out for you! You must be sooo excited!


If at first you do not succeed, then skydiving is surely not meant for you.
 
Jo - UC, total colectomy and ileostomy on August 24, 2008.


candyland
Regular Member


Date Joined Nov 2007
Total Posts : 98
   Posted 4/14/2008 10:13 AM (GMT -6)   
sfgJo, I will definitely keep you posted cuz I know the questions and concerns you're having.  I'm excited and scared at the same time.  I've actually put this off a couple of months because I've been afraid to go back to "the way it was."  UC was such a humiliating, depressing way of "life" (hardly living) and I've been so happy since being able to leave my house, commute to work, take road trips, go to my son's baseball games, etc., with minimal to no worries.  I wish you could've done this in 2 steps instead of 3.  3 was the way it was first presented to me, but I was fortunate that by the time I decided to go thru with the total colectomy/ileostomy, I was on a low enough dose of Prednisone that my surgeon was able to combine steps 1 & 2.  I knew going into surgery that there was a chance that he wouldn't be able to create and connect the j-pouch, but I got lucky.  I hope you're doing well and I'm very excited for you that you too have this chance!  We'll j-pouch thru it together! :-)

Westcoast Joe
Regular Member


Date Joined Apr 2005
Total Posts : 130
   Posted 4/14/2008 3:15 PM (GMT -6)   
I also want to thank Sue Bear. I just got out of the hosipital last week and had the j-pouch surgery and waiting to complete the takedown. I also was told by my doctor that she may not be able to do the j-pouch. I went to the j-pouch site and became very scared and depressed. I came here because I thought maybe someone had the answers and as luck would have it, the same questions were already asked. I do have a question for all of you. I have a lot of pain right now. I had surgery last Thursday. Is it ok to keep taking pain meds. I stopped in the hosipital because my ostomy stopped working. I'm eatting everything right now , with no problems. I'm taking meds only during the day and they help a lot. How bad is your pain or how long did it last. I'm also walking a lot. Thanks, Westy yeah
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