Yes, my sister went through this.  We had our j pouches done for FAP at the same time.  She had a really hard time, but it got better over time...and then she functioned normally - as "normally" as you can with a pouch.  I know it's easy for me to say, but try not to panic.  My sister's was an ileus, I think.  It was so long ago.  She had to go back to the hospital several times. Then she'd get a stricture and have to go get that dilated. It took her a lot longer than me to get it all going.  That was almost 30 years ago - we are both still here and we are ok.  Keep asking for help from doctor - if you feel like you aren't getting help - ask around for other doctors. You will get past this.  And then you'll say, "why am I pooping all the damn time". Don't give up!

Thanks Angie for giving me at least some hope. Do you know how long it took your sister to be able to poop on her own? Weeks? Months? I'm at week 6 post op now with no hope in sight.

I can't remember exactly how long- it' a blur.  I remember she went to ER several times throwing up, not pooping.  It's hard to remember, but I think she also had infection.  Then, we had to go in 2? 3? times for a stricture dilation under mild anesthesia (for her).  We had the regular dilations with no anesthesia at doctor's office.  It took her a long time.  Jan's comment above about ileus, all the meds slow it all down, etc.  This has happened to us post op on other surgeries (not related to the pouch) and when my sister had her 3 kids.  Took her forever to poop after having her kids.  The good news:  it did all pass (literally!) and now she really is in a good place - I'm pooping a lot, but I stay home, so it's not so bad when I'm near my private toilet. 

I know you are scared.  Keep on fighting - go to surgeon for help and if that does not work, get someone even better if you can. My sister swears by Cleveland Clinic (we did not have our original surgeries there) - but she had some problems later that no doc could figure out  - this was in major metropolitan area of Philly - finally, she went to CC.  They fixed her up and found a sort of benign mass stuck under the pouch that no one found elsewhere - they took it out - and she has done so much better ever since.  Don't know where you live or if you can afford to go to CC.  Just sharing that this is ultimately what worked for her. 

Keep us posted - we are cheering you on. I hope you have family advocating for you and reaching out for answers - you can't really do this alone.  If you don't have family helping, I hope you have friends helping you.    I believe you will poop again!!!  Probably more than you ever wanted to!!

Wow! Six weeks is a really long time. I presume, but still have to ask:

 No opiates? Your electrolytes in order, especially potassium? Walking a lot?

I have not heard of ileus lasting this long. This is sounding more and more like pelvic floor dysfunction. Maybe time to ask about biofeedback therapy.

Jan

Thank you for your comments. I am very blessed to have an amazing support system. I am 32, have a wife that won't leave my side, and a nurse for a mother who still won't cut the cord. They are a great support and advocates for me.

I have not been given opiates but is on my list of things to ask about in my appt today. Everything else seems to be fine. My surgeon suggested trying a fleet enema or glycerin suppository but the tiniest amount of fleet gave a strange burning sensation that really wanted to come out, but of course, I couldn't pass it on my own. Because of that experience, I'm afraid to try the suppository

I would be extremely happy with the outcome otherwise, if I could only figure out how to pass on my own. I can't even pass gas on my own whereas I was able to previously. Baffled.

I hope you get some relief and soon.  So sorry you are going through this.  So glad you have great wife and nurse mom.  The family support is so helpful.  I hope you mention the biofeedback idea Jan suggested.  You never know which idea will be the magic one that will finally help.  Keep asking and don't give up - easy to say, I know.  You have support here on the pouch forum.

I sure would not use opiates in your case, since one of their primary actions is to slow the gut. That is the LAST thing you need. I would suspect that the burning you experienced with the Fleets was due to the concentrated saline solution. Glycerine suppositories have no salt in them. But, I cannot imagine why they would work if you cannot pass liquid or gas without intubation. Glycerine draws water into the bowel, like the Fleets enema, but without the saline. I saw in your other post that biofeedback has not worked.

Have you tried just inserting a finger instead of the tube to get things started? 

Since this is becoming chronic, I think it is time to consider the likelihood that you developed a structural problem in the early post op days. Sometimes people develop a twist or prolapse in the pouch that is not evident during scope or static imaging. What is needed is a defagram, which is flouroscopy done while attempting to empty the pouch. It is then that the abnormal twist or collapse is visualized. Unfortunately, surgical repair is usually needed if this is the case.

Jan