Hi LB Greenville,

Sorry you are having these issues. I'm certainly not an expert, but the fact that you didn't start having this issue until 7 or 8 years after your surgery suggests that it is less likely this is pouch related. There may be another reason for your problem. I know it's easy to blame the IBD/pouch for all our issues, but the truth is, we can all develop problems independent or unrelated to our j-pouches. So the surgeon might be correct in his thinking. If a nerve or muscle was nicked or the bladder structually damaged during surgery, you would have most likely started having problems almost immediately. That is just my thinking.

Of course, that's not to say your issue isn't related to your surgery. You could be having problems perhaps with scar tissue. I have also read an account (once) of an instance where the pouch fused to the bladder. However again, you would think these problems would show up sooner, not many years later. Either way, if it were me, I would be looking to have this fully investigated. Have you had a pelvic ultrasound, CT or at least a bladder scan? That would be a good start. It's not enough to simply have a theory that the pouch/surgery caused it. You want to find out what is causing it, pouch or not, and move forward with possible treatments. Hope you find out what it is, and do keep us posted!

Oh my gosh I just came on here to post a similar question. I had my surgery about 7 years ago. Looking back, I realize I had some minor issues with my bladder from the get go. For instance, completely voiding without emptying my pouch Simultaneously has always been difficult. I also feel that in the years since my surgery it has been more difficult for me to tell what is going on with my bladder. Sometimes I think it might be full but only a small amount of urine comes out. Sometimes I am just not sure how full it is. It is like, I am just not completely tuned in with it. This makes me think that there was some nerve damage with the surgery. Over the last few onths or more, I started to become more aware of these problems. I also noticed some urinary leakage. Today, I had a VUDS test to see how the bladder is functioning. Well, all I know so far is that the test did't go over so well. I had some incontinence with coughing and after they fill up my bladder I was totally unable to void. If I want to just urinate without emptying my pouch it often takes me a few to get going but during the test I just couldn't make it happen. Again, it was like the nerve messages just weren't properly being sent of something. Thoughts anyone? I am upset by all of this and I am surprised that I wasn't more aware of these issues years ago. Really I think my main concern was the jpouch and so I didn't give my bladder any mind.I am only 31 so I feel a bit depressed by all of this. If anyone could offer some insight, shared experience, that would be great. LB Greenville do you share any of these experiences? Have you had any testing done? Thanks all for your support. Andrea

I have Interstital Cystitis so I know bladder issues all to well. It could be possible you have that. Most doctors misdiagnose it and tell people they have UTIs. Also pelvic floor dysfunction can be a cause.

My IC is better since I took my colon out but when my pouch is full or has gas moving around I can't old anything in my bladder more so than usual.

Thanks everyone!

Spooky - Thanks for your thoughts and I have thought the same thing off and on. You are right, I should thoroughly investigate. It is strange timing.

Andrea - YES! We have similar stories. I can urinate w/o emptying my pouch if I really concentrate but generally I always have to do both. Right after surgery when I would urinate if felt like my bladder was collapsing when it was emptied. It did not hurt, just felt very strange. When I spoke to the nurse then she said my bladder was "settling back into place". I have not had extensive test or ultrasounds done. I really should, I just am concerned that they will suggest more surgery and I don't want to be opened up again. Every time you have a surgery to fix one thing something else is affected. Or at least that is how I feel. It is very frustrating, I understand! I will say I can deal with this much easier than the UC so I won't complain too terribly much. Also, I am grateful to the surgeon and don't blame him. He gave my life back to me. This is just something I have to deal with these days. I, just like you, did not even consider that my bladder would be involved. Mine gets pretty bad, not just coughing. I can be standing somewhere and I can feel my bladder just start leaking. Sometimes is it a lot and other times just a little bit. I wear panty liners everyday of my life now b/c I just never know and I can't risk it. I will say a prayer for you and keep you updated on what I find out.

vanessavy - Thanks for the information. I have not looked into IC but I am going to this evening. Thanks again so much!

LB Greenville I am really sorry for your problems but I must admit it is helpful to see that I am not the only one. Yes, our stories sounds similar. Also, until today I didn't realize(though I suppose I suspected)that I had incontinence with coughing, bearing down, etc. It was actually (as you mentioned) the act of just standing around or walking down the street that is where I began to notice urinary issues. What a bummer but I will take inspiration from your positive attitude! I see my doctor next week for the full test results, I will keep you posted and please keep us all posted about your situation. Good luck!
~~andrea

IC is very very common but an idiot Uro will misdiagnose you. The first time I had a Uro look in me and said my bladder looked good. Went to a more experienced doctor who did a hydro and a cystoscopy and saw the cystitis in patches here and there. 4-12 million men and women have it in the US.

Immediately following Step One I experienced complete urinary retention. I couldn't pee for the life of me and left the hospital with the Foley catheter in place and two urinary bags.....the large one for overnight use and a small leg bag for day use. The Foley was very irritating and I suffered a number of UTI's. Finally saw a urologist who explained the nerves controlling the bladder are very close to the area worked on during the surgery and could have been damaged or traumatized. Time would tell. He sent me back to the Enterostomal Nurse who removed the Foley and taught me how to self-catheterize. What a relief and really not bad at all! I never had the feeling of needing to pee. I just catheterized every four hours or so....each time trying to pee first on my own. Gradually, my urinating function returned to the point where the urologist said I no longer needed to catheterize. However, I have met several J-pouchers who never regained the ability to urinate without self catheterizing. I know your situation is different. I'd advise seeing a good urologist. Best wishes!

Vanessavy, do you deal with any issues related to incontinence or share any of the other aspects of what I have described? I almost feel that maybe I had some nerve damage that has deteriorated over time and additionally I feel my pelvic floor has been weakened. Any thoughts are greatly appreciated. I am living in Taipei, saw one urologist and after a (no joke) t
wo minute interaction said he would put me on medicine. I said, no, actually I want to understand what is going on. He reluctantly scheduled me for the VUDS test, which I mentioned was just yesterday. My interaction with him was very frustrating. I am going back to the US for the summer, where I have no health insurance, so this issue may need to be put on hold. Has anyone done physical therapy or biofeedback? Other ideas? Thanks!
Andrea

Yes they move our bladders. I had a problem after take down and my bladder was prolapsing into my vajaja. My Internist examined me and sent me to my OBGYN. After a long weekend and a lot of pain I showed up at my OBGYN appointment and it had moved it's self back into place.

I know that is not your problems but there was a lot of empty space left inside us when they took out the 5 feet of our colon. I wonder if things can float too much causing problems like yours.

I think you need to see a bladder specialist or your doctor to discuss how to fix it.

Good Luck

I was having this problem a few years ago and my Doctor seemed to think prostatitis may have been causing it or perhaps a low grade UTI. The symptoms were I would go from not having to urinate at all to having massive urgency to urinate within a matter of minutes, the kind of urgency where you feel like your bladder is going to explode. The situation passed after a few weeks without definitive treatment. In your case I would see a urologist and investigate a possible bladder issue or UTI.

Well yes I have had everything you have mentioned and more. I had have 2 hydros done that helped but doctors don't recommend doing them since it can do damage.

Maybe ask about taking Elavil, it is an antidepressnat that is used to treat bladder issues in a low dose, about 10mg. I take Bentyl now for my gas/pouch and it has helped my bladder flares at times too since it is an antispadmodic. Stay away from canberries and anything too acidic that can do a number on the bladder. Also a low potassium diet is recommended since that can cause issues for bladders. Sometimes diet plays a big role in my bladder problems. IC is an autimmune disorder where the urine turns acidic and eats away at the bladder wall. Mine is more over active issues they seem to think.

I too swore for years maybe my tubal/ablation or stomach removal damaged my bladder but I had IC the whole time.

i had my original surgery for FAP twenty years ago. recently i was diagnosed with a kidney issue. stents to open up my ureter but now Ive got retention. I have never been able to void urine without stool. now it feels as if my pouch is sitting on my bladder. i go back to my Dr for my upper lower in Jan as well as my urologist in Jan for a urodynamic test and a renal function. in the mean time i feel like i have to urinate all the time.

My bladder was nicked during surgery my surgeon told me while recovering to prepare me. He actually had to sew it up nice and tight to avoid any major issues. I had an extremely difficult time peeing and actually had to sit on the toilet and bend as much forward as I could to empty it. I also figured it was very difficult due to all the pain meds I was on. When I would go also and empty fully it seemed like my bladder had a lot of scar tissue around it connecting to my pelvis and I could see it actually cave in. I could only pee sitting down for the longest time then it switched where I could only pee standing up it was weird. Now I can do both but I can still feel there is a lot of scar tissue around it making it difficult and painful sometimes.