2 failed pouchograms w/ tiny leak

Oh Jess, I think there probably isn't anyone on here that hasn't doubted there decision once or twice. I just had my takedown in June and I'm just now starting to realize what a great choice I made.Think about how your life was like before and how great it WILL BE in the future. I can't believe how much my life has already changed. I still go alot, but not near as much and it's getting less as time goes on. And when I feel like I need to go I don't have a panic attack if I'm not near a bathroom. I can wait an hour or so now. It's a much better quality of life. It will come for you too, it just takes patience. I do have bad days like we all do, but they get fewer. Unfortunately, complications are a part of the process for some of us. This too shall pass, as they say. Please keep posting and asking for support. I have found help just reading peoples posts.
Take care, Katie

KatieO,

Met with my surgeon yesterday and we discussed the takedown etc. He still believes there to be a pinhole leak and seems confident it will be healed by next month and has had me schedule my next pouch study too. I was also able to discuss the takedown etc. My only concern is how close to the holiday I will be when I go into the hospital. We are thinking either 12/11, 3 mos to the date of step 1, or 12/18, exactly 1 week before Christmas. We have 2 children so I am trying to plan Christmas visits with my family coming to me so I can be home, comfortable and bathroom adjacent ALL day. Thanks for the encouragement. It certainly helps. This next year will be interesting as my husband and I may try for child #3 once I am all healed. Well Wishes!!

Great news! Hopefully everything goes perfectly and you get to enjoy next Christmas with 3 little ones (or with one on the way)!

kathy

If it looks like it will be too close to the holiday, you can postpone until after New Years. I know you probably would not like to do that, but if there are complications, it sure would be a bummer to still be in the hospital on Christmas.

If it were me, I would not schedule a week before Christmas.

Jan

I chose to wait a full year between Step 1 and takedown because of scheduling. I have never regretted the wait. I was fully healed and used to having a temp. ileo. by then. My recovery from takedown was a breeze! It has now been over 10 years post takedown and all is well. Hang in there. Plan your takedown around your family's schedule. It may seem like no time is the right time but some times are better than others and a few years from now you won't even remember chosing to wait. Best wishes.

Hi Jess...I feel your devastation. I too had my reversal surgery delayed multiple times because of a pin hole leak. I had my J-pouch surgery at the Cleveland Clinic in Florida in Aug 2011 and was to wait 6-8 weeks to get checked out if ready for reversal. The complicating factor is that I live in Pa near Philly. So I flew down and was told that I had a pin hole leak and would need to wait an additional 6-8 weeks. I explained to the Dr that it costs a lot to travel to Florida for a pouchogram, so I asked if I could go to the University of Pennsylvania for the next pouchogram. He agreed and so I scheduled my pouchogram for before Thanksgiving 2011 and a tentative reversal date of December 9, 2011. Well, I went to UPenn and my pouchogram came back great...I was so excited and thankful that Thanksgiving. So I had my plans for my wife and I to travel to Florida and my three little girls to be watched by family for the duration of the reversal and recovery. Well, the day before the surgery, my surgeon had a weird feeling and wanted to double check the pouchogram and ordered another one there. I had it done and was crushed to find out that the pin hole leak was still there. It had not healed and UPenn was wrong. I, like you, was devastated. This meant another 8 weeks of waiting for healing. But my surgeon did still perform a procedure on December 9th to put some fibrin glue along the seam of my pouch internally to help seal it and help the healing process. So I am happy to say that the third time was the charm, in early February, my pin hole leak was healed and I had my reversal surgery the next day. Now I am almost a year out and I feel great. I look at the waiting period as making my J-pouch stronger. And I also feel like my recovery was better because of it too. I am 10 months out and go maybe 4-6 times a day. And don't go at all at night. I wish you the best of luck Jess...feel free to ask any questions.

Take care,
John

@ John, Thank you for sharing your story and support. I really appreciate that. I am very much looking forward to the takedown and am prepared for the worst, hoping for the best. I know my surgeon is being safe and only thinking of my long term health.
@ Jan, I am not worried about the scheduling be so close to Christmas. I just want to make sure my kids don't feel like they missed out because of mommy. I am actually welcoming the date being so close since I will be able to be home for the holidays. This is what my husband has asked for for Christmas this year, a happy and healthy wife. My family is willing to shift things around and come to us this year.

Thank you all!!!!!

What a great gift to ask for! Yea for your awesome husband!!!

kathy

My only advice is to really ask risks and benefits of trying to resection the leak in pouch. My spouse had a leak that they found tried to
Fix was unsuccessful went back in to remove pouch due to
Inflammation and swelling and there were unfortunately more risks
To redo pouch. After 11 surgeries for
My spouse in 4 years, I honestly believe it's so important to really think about your own situation how
Many surgeries, and fixing pin hole
Leak in pouch, are the risks understood and discussed at length with your doctor and family. I wish personally we didn't agree rection because leak reappeared and now my partner has had so much abdominal trauma he isn't healing correctly and had numerous surgeries after. It will be okay, but please remember it's important to think about the bugger picture and what you feel like is
Most important and reducing any additional interventions if you have any concerns or gut feelings.

Great news is that I had a pouchogram on Monday and my takedown the following afternoon. My doc still sees what he thinks is a tiny tiny leak and believes it will get better with time. I am dealing with butt burn and cluster frequency which I imagine will change once my pouch stretches and I can empty in one visit instead of multiple. I am also contemplating purchasing a bidet in the next few months as I believe it will be a great investment for my new journey.