J-pouchers

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

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!

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?

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

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

Buttonhole extender:
http://www.mileskimball.com/MilesKimball/Shopping/ProductDetail.aspx?Cid=Apparel%2FPersonal+Care&SCid=Foundations+%2F+Sleepwear&Productid=310549&SourceCode=10509000001&mr:trackingCode=A50E75E3-DD81-DE11-B7F3-0019B9C043EB&mr:referralid=NA

another
http://cgi.ebay.com/4-Pant-Extender-Button-Waistband-Extenders-Jeans-10_W0QQitemZ370232292110QQihZ024QQcategoryZ50978QQcmdZViewItem

foldover yoga pants:
http://oldnavy.gap.com/browse/product.do?cid=9545&vid=1&pid=633125&scid=633125072

drawstring pants:
http://oldnavy.gap.com/browse/product.do?cid=9545&vid=1&pid=676488&scid=676488002

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.

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! ;)

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

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