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Liza D
Regular Member


Date Joined Apr 2009
Total Posts : 166
   Posted 8/6/2009 8:23 AM (GMT -6)   
Hey guys, It has been a while but...
I went to see my surgeon yesterday and he mentioned keeping the bag for as long as I want. I thought he was crazy because I was always planing on using the J-pouch but... I mean is there every a good time to have the bag opposed to the j-pouch? Is the urgency THAT bad?

I really want to be as close to "normal" as possible. But is that not worrying about where the bathroom is and keeping the bag or is it not having a bag and going to the bathroom a lot?

I am only 27 and have not started my family yet. Is it better to be pregnant with a bag or without?

Any advice on the take-down/reconnection surgery would help. Does anyone regret reconnection?
UC (Pancolitis... 90%!) December 2001
Arthritis (2003)
Upper GI Ulcer (2006)
Osteopenia (2008)
Depression/Anxiety (2002)
J-Pouch May 2009

Check out my blog: shlookshlies.blogspot.com/


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 8/6/2009 2:57 PM (GMT -6)   
No, there is no good time, whatever is best for you. The majority of people wait 3 months between surgeries. But many do wait longer in order to regain health, enjoy life for a while before taking on additional surgery, or because it's not convenient for them. It's your choice. I was one of the ones who wanted my reversal sooner rather than later so I was pleased to have an 8 week window between surgeries. Keeping the ostomy longer won't change the recovery from the second surgery. You will still have to face the higher frequency in the begining, urgency, adaption to food, etc. But no matter which schedule you choose, the adaption is so much easier when you are healthy.

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


glaciergrl
Regular Member


Date Joined Apr 2005
Total Posts : 269
   Posted 8/7/2009 3:12 PM (GMT -6)   
I was reconnected on June 19 after 8 weeks of having the ileostomy. I had surgery on a Friday, went home on Monday, and went back to the hospital on Tuesday. I have an anastomic leak (1% of reversals) and I had bacteria in my abdomen. One of the surgeons mentioned that if my immune system would've been stronger I would've been able to fight it on my own instead of almost a month in the hospital. I don't regret the reversal, my pouch is doing great! If I could've know what was going to happen I might've waited until my immune system was a bit stronger. Everyone is different! Good luck!
 
Holly
25yrs old/ teacher/ Wisconsin

Diagnosed UC Pancolitis in Nov 2004
Diagnosed PSC in Oct 2006


Pitz
Regular Member


Date Joined Jul 2007
Total Posts : 84
   Posted 8/7/2009 7:11 PM (GMT -6)   
I have the same questions as Liza.

Do any of you regret having a reversal?
How bad is the urgency versus having the ileostomy?

I've been on several meds since being diagnosed, ending with Remicade. I was on Remi for six months, then had a life-threatening blood loss. I was hospitalized with a hemoglobin of 5.3 and had blood transfusions and iron infusions. It was during this hospitalization (June '09) that we decided it was time for surgery. I had a total colectomy with ileostomy. My surgeon said my rectum looked good, so didn't take that out. I have the possibility of a reversal. He will reevaluate in about a year and we'll see then.

I do feel much better, and am able to eat most anything. I have pretty much regained my energy. However, I am struggling with how I feel about the bag. While it is nice not to be running to the bathroom all the time, it's taken awhile to figure out just what works best for me. I've had some problems getting the bag to quit leaking, but now have had some good luck using convex wafers and Osto-Bond (a skin cement). I'm now able to go a week without changing it.

I do find that I'm very self-conscious in what I wear. I still can't wear jeans without leaving the button unbuttoned, and even that is hard as my stoma is above my waistline and will sometimes "cut" the bag in half and the contents don't flow well to the bottom. I've been wearing mostly sweats so far. It also interferes with some activities where I can't just get up and use the restroom anytime I feel the need. (I play in pit orchestras for local community theatres.) The bag also seems to fill with gas and it sometimes looks like I'm pregnant on my right side! ;)

On the bright side, my hemoglobin has now been holding steady in the 12-range. I can't remember when the last time was I've been in the normal range! Also, I had labs at my hematologist's office last week and all numbers were normal. So it seems that it WAS my colon causing all my wacky numbers and need for blood transfusions, etc, over the last 2-3 years. I am prone to blood clots, however, and will be on Coumadin the rest of my life, but my visits to the hematologist are now being spread out longer than weekly now. ;)

So, I guess my main question is how bad is the urgency after a reversal? I think I'd rather go that route than have to deal with leaks, bloated bags, what clothing to wear, etc.

Thanks!

Ulcerative Pancolitis (dx'd 6/2002)
Colectomy w/ileostomy 6/2/09; iron infusions; Aranesp injection every week for anemia;
Remicade; Pentasa; 6-MP; Prednisone; Lialda; Asacol
various meds for other conditions

Post Edited (Pitz) : 8/7/2009 7:14:12 PM (GMT-6)


Liza D
Regular Member


Date Joined Apr 2009
Total Posts : 166
   Posted 8/7/2009 7:37 PM (GMT -6)   
Right Pitz? I think I am going to go for it and get the reversal done. Right now I am unemployed and I should be able to control my bathroom visits by the holidays.

I guess there really is no great time to go into surgery but there is no time like the present.

Thanks for the advice. I hope you get some answers Pitz. Good luck.
UC (Pancolitis... 90%!) December 2001
Arthritis (2003)
Upper GI Ulcer (2006)
Osteopenia (2008)
Depression/Anxiety (2002)
J-Pouch May 2009

Check out my blog: shlookshlies.blogspot.com/


Liza D
Regular Member


Date Joined Apr 2009
Total Posts : 166
   Posted 8/7/2009 7:45 PM (GMT -6)   
Oh, also Pitz, low rise jeans have become my best friend... the lower the better. I am able to keep the bag tucked in for a little while and if I eat, I have to pull it out a little at a time... I also get the prego on the right side... which sucks even more because I was pregnant and lost the baby a week before my surgery.

Now that that is brought up, does anyone know if pregnancy is better with the bag or with the j-pouch?
UC (Pancolitis... 90%!) December 2001
Arthritis (2003)
Upper GI Ulcer (2006)
Osteopenia (2008)
Depression/Anxiety (2002)
J-Pouch May 2009

Check out my blog: shlookshlies.blogspot.com/


Pitz
Regular Member


Date Joined Jul 2007
Total Posts : 84
   Posted 8/7/2009 8:04 PM (GMT -6)   
Thanks, Liza. Yes, I am so far wanting a reversal, too. I'll keep my fingers crossed for it. The urgency certainly can't be any worse than before surgery!

I'm unemployed, too, which is another reason I opted for the surgery when in the hospital. At least I won't have to take the time off now when I do get a job. I'm almost out of money, though, it's been very hard through all this.

I'll have to try some low-rise jeans and see if that helps any. Or wear a longer top so I can hang the bag outside of my jeans. I've been weaing short-sleeved "sweat" jackets over my top so I can hide the bulge.

Good luck with your surgery!

Nancy

Ulcerative Pancolitis (dx'd 6/2002)
Colectomy w/ileostomy 6/2/09; iron infusions; Aranesp injection every week for anemia;
Remicade; Pentasa; 6-MP; Prednisone; Lialda; Asacol
various meds for other conditions


glaciergrl
Regular Member


Date Joined Apr 2005
Total Posts : 269
   Posted 8/7/2009 11:32 PM (GMT -6)   
I do not regret having the reversal at all and I had some major problems with infections etc. I am very happy with my pouch. I also do not have any problems with urgency!!! I also had pancolitis and there were MANY MANY times when I just couldn't make it to the bathroom it doesn't matter how close I was. I no longer have that worry. I could hold it for hours if I needed to.

about the pants issue... I wore low rise also. As long as the pants weren't too tight things could still flow downward. When I went out I would just push the top down nonchalantly and I would occasionally excuse myself to the bathroom to "burp" my bag or empty it. My system worked out pretty good.

Whatever you do, don't not eat or drink thinking this will be a temp solution to not having a full or prego looking abdomen. That can lead to soooo many problems.

Good luck!

Holly
25yrs old/ teacher/ Wisconsin

Diagnosed UC Pancolitis in Nov 2004
Diagnosed PSC in Oct 2006


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 8/8/2009 6:30 AM (GMT -6)   

There is no urgency with a jpouch.  It is not like having UC.  Sure, the early days of recovery are a struggle but it gets better.

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


Pitz
Regular Member


Date Joined Jul 2007
Total Posts : 84
   Posted 8/8/2009 12:04 PM (GMT -6)   
Holly - I, too, had pancolitis, but I never really had an urgency problem before surgery. I'm going to have to try some low-rise jeans. I've not always been in a position where I could burp the bag or excuse myself to do so. Kinda hard to do that while I'm sitting in the pit in the middle of a show. ;) I did once get up and walk out to the restroom, though, but that was during a rehearsal. That time I had a leak and had to change everything. Made the second act go by pretty quick for me 'cause I was late getting back. ;) When I was in the hospital deciding on surgery, the surgeon wasn't sure I'd be back to playing so quickly, but I told him "You don't understand. It's not negotiable!" At my first appointment with him post-surgery, he asked if I was playing. You don't tell a musician they're not going to play...they'll just do it anyway! ;)

And no, I don't quit eating or drinking. I don't drink anything carbonated, of course. That could be a disaster for me! But when I'm playing fotr shows, I do avoid eating much until afterward. I do keep on drinking, though...don't wanna get dehydrated. Been there, done that!

Sue - Thanks for the info. That's what I was hoping to hear. I'm just trying to gather as much info as I can so I'm prepared if and when the day comes that I can have reversal surgery.


Nancy

Ulcerative Pancolitis (dx'd 6/2002)
Colectomy w/ileostomy 6/2/09; iron infusions; Aranesp injection every week for anemia;
Remicade; Pentasa; 6-MP; Prednisone; Lialda; Asacol
various meds for other conditions


Lyonene
Regular Member


Date Joined Jun 2009
Total Posts : 64
   Posted 8/8/2009 1:18 PM (GMT -6)   
I'm not up on today's fashions at all (or yesterday's, for that matter) but have you been in Old Navy lately? Last time I was there many of their pants had a fabric waistband that folds over. I'm blanking but I think I also saw jeans with this waist rather than the traditional one. Might be worth looking into.

For the days you need to leave your jeans unbuttoned, there's a little gadget you can get for the buttonhole to extend it. It was made for women who aren't ready to go into maternity clothes yet but can't button up their regular clothes anymore. I'll find a link for you.

Heather

Lyonene
Regular Member


Date Joined Jun 2009
Total Posts : 64
   Posted 8/8/2009 1:30 PM (GMT -6)   

Pitz
Regular Member


Date Joined Jul 2007
Total Posts : 84
   Posted 8/8/2009 5:03 PM (GMT -6)   
Thanks, Heather. That's exactly what I need! I like the buttonhole extender from Miles Kimball the best. And I'll check out Old Navy, too. There's one just a couple blocks from me. I like the fold-over yoga pants best. Looks like it gives one an option just how much you want to fold over so it could be a little higher if need be.

Ulcerative Pancolitis (dx'd 6/2002)
Colectomy w/ileostomy 6/2/09; iron infusions; Aranesp injection every week for anemia;
Remicade; Pentasa; 6-MP; Prednisone; Lialda; Asacol
various meds for other conditions


Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 8/8/2009 10:15 PM (GMT -6)   
Liza,
I've been told that your fertility decreases significantly after j-pouch. But once you get pregnant, it can be a normal pregnancy with minimal risk factors. There was a woman in my support group with a j-pouch who had to have fertility treatments to get pregnant, but had TWINS!
Healthy boys.
They think fertility is affected by the scar tissue and adhesions. Those studies were based on open procedures. There are no complete studies for fertility after laproscopic procedures, yet. B/c it's relatively new.
If you go to j-pouch.org, you can see the posts about women TTC.

That's why I chose to wait until I have another baby before i get my j-pouch. Hopefully we can get pregnant soon. We will be trying to conceive next month, as soon as i can get off my warfarin.

Good Luck with your decision.
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 2/15/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
coumadin, prenatal vit.
(temporary ileostomy....maybe)

"Things turn out the best for those who make the best of the way things turn out."


UC Wife in MD
Regular Member


Date Joined Aug 2007
Total Posts : 63
   Posted 8/10/2009 6:39 AM (GMT -6)   
My husband is exactly 1 week post takedown for his J-pouch and is doing great.  I'm actually surprised how well he's doing in the urgency department.  I had planned on the worst after doing all my research here but we were able to go out and run errands this weekend without him having to go to the bathroom while we were out.
 
Obviously I can't speak from personal experience but I think the more time with the Ostomy the better equipped one is for the pouch.  My husband had a end ileostomy from 3/08 until 2/09 and then had a loop from 2/09 until 8/3/09 and he is not experiencing terrible urgency that I've read about here.  He has good control and can pass gas without running to the bathroom (He's proud of this, that he can sit there and fart again...).  I'm really surprised at his diet.  I was all ready to do the BRAT (Bananas, Rice, Applesauce, and Toast) diet for a month or two but we ate pizza 4 days after surgery and McDonalds twice this weekend, and he got the 1/3lb Angus burger.  I'm just really happy that life is good finally and cannot say how great the J-pouch is so far.

Pitz
Regular Member


Date Joined Jul 2007
Total Posts : 84
   Posted 8/10/2009 9:11 AM (GMT -6)   
UC Wife -

This is great to hear. It's stories like this that really solidify my desire to have a reversal if/when possible. I don't want to wonder some day "What if?" if I don't try it. I don't think I'll ever get used to this bag...just better at it, like someone said on a post somewhere else here.

LOL re: the "sitting and farting." Back to feeling normal again! ;)

Ulcerative Pancolitis (dx'd 6/2002)
Colectomy w/ileostomy 6/2/09; iron infusions; Aranesp injection every week for anemia;
Remicade; Pentasa; 6-MP; Prednisone; Lialda; Asacol
various meds for other conditions


ElliUK
Regular Member


Date Joined Mar 2009
Total Posts : 74
   Posted 8/10/2009 12:54 PM (GMT -6)   
Yes UC Wife - i am really glad you posted your story.
 
I too feel that having the bag for a while helps.  I am sure it must give your small intestines a chance to slow down a lot before havign a j-pouch.  I am really happy since having my stoma in march, really starting to live life rather than it pass me by - but when my surgeon said i was an ideal patient for a j-pouch i did want to try.
 
Like Pitz said i would hate to be here in a years time thinking what if i had gone for it.
 
I too am looking forward to being able to control passing wind again!! I have quite a noisy stoma!! 
Elli 28
UC since 17
Azathioprine, prednisolone, Asacol,
blood transfusions, iron infusions.
Colon Removed 18 March 09.
Ileostomy
 


Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 8/10/2009 7:47 PM (GMT -6)   
UC Wife,

Thanks for telling us all that story. It's a positive outcome and we don't hear those as often. I'm glad ur husband is doing so well! We can all hope for that kind of outcome.
Right now, my husband doesn't want me to have ANYMORE surgeries. I just can't even think about that. I'm satisfied with an ostomy, but I HAVE to at least TRY a j-pouch. But i'll wait a few years until we have another baby.
AND
I can't even tell you how excited I am about farting again! That's awesome. I thought i'd lost that ability along with my colon.
So THANKS
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 2/15/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
coumadin, prenatal vit.
(temporary ileostomy....maybe)

"Things turn out the best for those who make the best of the way things turn out."

Post Edited (Chasblah) : 8/10/2009 7:50:08 PM (GMT-6)


ruissarr
Regular Member


Date Joined Jul 2009
Total Posts : 80
   Posted 8/11/2009 12:01 PM (GMT -6)   
wow i have been in the wrong area!! i have been in the UC area and i am trying hard to find jpouchers, suebear, summerstorm have it i know...anyways, i just got reffered to a surgeon and i hope to start the jpouch ball rollin soon, i am done being sick!! and we will have a new baby in january 2010, i want to be a healthy daddy =)
24 year old guy, UC since I was 17
remicade for two years, worked OK but got married and was told it could cause birth defects so I quit feb 08. my wife reminded me that i still had D most of the time while on remicade.
Wanted to start a family Jan 09 so dr stopped 6mp, wife got preg in may so I am back on 6mp also lialda and 20 mg pred
 
starting back on at least one remicade IV to see if i can get some relief next week,
most likely having j-pouch surgery this year, within a couple months, so i can be healthy for my baby, meet with my dr about it august 10!


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 8/11/2009 12:33 PM (GMT -6)   
If you really want to meet jpouchers then the place to go is www.j-pouch.org There are over 6000 pouchers on that site and only a handful on this site.
You might meet some at jpouch.org who had your same surgeon.

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


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 8/12/2009 3:26 PM (GMT -6)   
ruissarr- i dont have a jpouch i have a perm ileo. that means i will always have the bag. but i will be happy to answer any of the questions you might have about the time when you will have the bag.
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