Sorry, but that surgeon sounds like either he didn't understand or is a jerk. I think you need a second opinion ASAP.

Gin

Urinary urgency and retention is absolutely not a normal thing. If your surgeon will not address this, see your primary doctor about a urology referral. Even your GYN can assess and refer you.

It is entirely possible that you have pelvic floor dysfunction. Again, your GYN or urology referral can address this. No need to suffer.

Jan

What a JERK! My GP sent me to a C/R surgeon years before I received my UC diagnosis as he used a speculum to look up my rectum and he saw lesions. (It was my UC.) The surgeon didn't even examine me, told me I wasn't seeing blood in my stool that it was tomatoes. I told him it wasn't tomatoes as I hadn't been eating anything with tomatoes the numerous times I saw the blood. He told me he had Nurses who were mistaken by tomatoes in their stool. I was so upset I didn't think to ask about the lesions my GP saw. I wasn't diagnosed and suffered for 5 years after that.

I realized I had problems 3 months after take down. Again my Internist, different doctor who is my GP now, verified my bladder had prolapsed into my vagina. The weekend before my appointment with my OBGYN I was in horrible pain. It got so bad I made my first trip to ER. My bladder was no longer prolapsed and I had a bladder infection. I was very embarrassed as I'd never had bladder infections that hurt that bad before! IMO my bladder had moved itself back into place and that is what some of the weekend pain was.

Wendy, this has been a very long story to tell you that I think anything could be possible. It could be simple like my moving bladder or it could be serious like my missed UC by the JERK surgeon.

I was embarrassed in the ER but the ER doctor believed my pain. I hope you find relief soon.

Your doctor sound dismissive and cavalier. You need a specialist who will listen to what you have to say and hear your concerns. I for one, have seen a few doctors lately who have not been very responsive, are overly pressured about time spent in appointments, or overly pressured to limit referrals to specialists inside or outside of their hospital or clinic affiliation. It is unprofessional. Get the help you need. IMO, few generalists are competent enough to advise about pouch complications, even the average GI doc. But, no excuse for how you have been neglected. Take care.

Immediately after my first of two step surgeries I experienced urinary retention. I didn't even have the urge to urinate! My urinary bladder just filled up and filled up like an overinflated water balloon. While in the hospital they kept me catheterized and that took care of emptying my bladder. So, I lugged around my new ileostomy bag and a bag for urine. Not too comfortable, to say the least. Before being discharged from the hospital they removed the urinary catheter and watched to be sure I could urinate on my own. No such luck. I left the hospital with my new ileostomy bag and a Foley catheter attached to a huge bag for collecting urine. They also gave me a smaller leg bag to collect urine. Easy for me to switch between the two bags. I was in a state of shock. No one had told me this was a possible side effect of the J-pouch surgery. It seems as though the nerves which control the urinary bladder are very close to the area the colorectal surgeon works during the proctocolectomy. Still no one explained this situation and what I should do or what I should/could expect in the future regarding being able to urinate normally. The first urologist I saw was worthless. The second one was wonderful. He hooked me up with the hospital's ET nurse who taught me to self catheterize and removed the very uncomfortable Foley catheter. This urologist had me measure every drop of urine I was able to produce naturally before catheterizing myself to empty my bladder....about four times a day. Very manageable. He couldn't guarantee I would ever regain normal urinary function but I did.....it took about 6 months. So, guess I'd advise you to see a good urologist. Best wishes.

Thank you everyone for your responses. I met with another surgeon on Tuesday for a pouch endoscopy (he is actually the one who taught my surgeon 13-15 years ago) and he was awesome!! When I told him the problems I was having and my original surgeon's response, he told me, "Straining and pain that you are describing is not normal but do not worry, I will take a look and I will find out what is wrong and we will fix it." How awesome is that? Immediately more at ease than with my surgeon.

The outcome of my pouch endoscopy was this: (2) moderately sized hemorrhoids that he said will probably need a procedure (and probably causing a considerable amount of pain), a ridge effect on the left lateral side of the pouch outlet (which he feels is causing the straining of BM's and will require surgery) and low grade cuffitis. He also did dilation to improve some narrowing.

This surgeon said I will need one or two procedures to fix the hemorrhoids and the pouch outlet. They may be out-patient but may need to be in-patient. He is going to confer with my original surgeon and they are going to discuss the steps to get the corrections done. I am supposed to call the office on Monday to let him know if the dilation has made any improvements to my symptoms and to find out what we are going to do next. I told him that I wanted him to be my surgeon for the next surgery and he said for any corrective type surgeries they are usually both present so he said he will definitely do it. That made me feel better. He said none of this really explains the urination problems so he is still concerned about that.

Although it is good news that he figured out what was wrong with my pouch, the possibility of having one or two more surgeries was devastating and I cried all night on Tuesday and most of the day yesterday. I really thought the last two major surgeries would be the end of this darn illness and its just really difficult to have complications continue.

Jan - thank you for the advice - while I am waiting for all of this, I am going to call my GP and ask him to refer to me a urologist for some testing.

CeeeCeeee - thank you for your story. I had to be catheterized twice while I was in the hospital because I could not urinate at all either. Finally I was able to go in small amounts, if I turned on the bathroom water and sat on the toilet for about 10 minutes. That gradually got better to the point I am now but I haven't seen much more improvement. Your story gives me hope that maybe over time this condition will improve on its own.

Thank you all for your comments, I can't tell you how much I have relied on this site since making the decision to have this surgery.

Sincerely,
Wendy

I'm 5 months out of takedown and I've had problems urinating ever since my takedown. I could barely urinate in the hospital after they took the catheter out. I chalked it up to the anesthesia, but it continued after I was released. I told the surgeon several times, but he just said to wait and see bc the muscles down there need some readjusting time etc. I learned to live with it. I used to be able to pee any time I wanted to! Now I have to sit on the toilet forever and sometimes only get the urge when I'm in the shower (by the time I'm out, it goes away).
I had a cosmetic surgery recently (not ashamed to say so, lol) and they needed a urine sample before the surgery. I couldn't do it, so finally they catheterized me. The anesthesiologist said that lomotil can cause urinary retention. Kind of impressed she knew that, somewhat relieved, I hope it's just bc of the medicine.
Katie

Katie,
I hope your symptoms get better. I haven't taken Lomotil since before my takedown so that can't be my problem. I hope that is all that is causing yours though.

Good luck. Hopefully we are both like CeeeCeee and after the 6 month mark will be back to normal!

Wendy

Sorry you got bad news and spent some time crying. Usually, I try to put a positive spin on these things, because bad news is better than the unknown, and you wind up crying either way. Nothing worse than being made to feel like a worry wart and a bother. Just a little understanding goes a looooong way. So, at least you have an action plan for some of your symptoms.

All this trouble in the anorectal area may even be affecting your ability to initiate that urine stream. Hopefully, it can get sorted out sooner rather than later.

Jan

Hi, I came on here looking for answers as I usually do and came across your post. First, I too have a hard to urinating and usually have to sit for a long period of time on the toilet to go, and most of the time can't go unless I have a bm. Which brings me to say I still have, almost 1 1/2 years after my takedown, extreme pain while having a bm or holding my bm's. My new surgeon is scheduling me for surgery to do a loop iliostomy and 3 months later a takedown again! He says he thinks I need to rest that area to allow the inflammation to go away. I'm so tired of being in pain, this kind of pain.
I hope all the best for you and everyone else.

And to add I strain every time use the restroom, urinating or bm!

Thanks Jan. Yes, a little understanding does go a very long way and it is nice to have a game plan and I can at least hope this will take care of my problems.

Lovedby2: I am so sorry to hear that you are having these problems and having to go back to an ileostomy. How are you handling that? I hope you are doing ok. When is your surgery? If you are in that much pain and still having problems, doesn't that mean there is something wrong with your pouch? Or does the surgeon just think the inflammation wasn't able to heal correctly after the original surgeries? I sure hope you find comfort and this fixes things. I know how frustrated and upset I have been and it has only been 4 months since my original surgery and 8 weeks since my takedown. Please keep me posted. I wish you the best of luck with your procedures.

In February he did a sigmoid-oscopy and had a second surgeon confirm that my jpouch actually looks good. My CT scan in April showed a lot of inflammation everywhere. I am "dealing" with the thought of this iliostomy again but have hope because he will reverse it again. My bottom inside and vaginal area are always in pain after a bm and the straining causes my sacrum and legs to be in pain. I have a 6 year old and 3 year old that deserve their mom back, I just have no will power to do anything because of the fear of pain. Unless I take a pain pill, hydrocodone, I stay home. My surgeon is making feel like he won't be filling my script anymore and that itself makes me stress because I'm sure you know, this kind of pain is unthinkable! Thank you for your thoughts and I too continue to keep everyone who experience the backlash of all this in my thoughts.

Lovedby2: I do know what you mean about pain medications. I have been living on them too. My last prescriptions just came from my GP. I explained to him that I am having trouble with my pouch and pain and he had no problem providing me with the prescriptions. I have one for Hydrocodone and one for Tramadol. I take the Tramadol at work to make it through the day - it is very hard to sit all day long and I take the Hydrocodone in the evening and at night.

Have they tried putting you back on prednisone (assuming you were on high doses with severe UC like I was) to see if that would resolve the inflammation?

I know what you mean about your kids deserving to have their mom back. I feel horrible for my husband and the things I haven't been able to do for the past 5 years. I am very hopeful that my next 2 procedures will take care of my issues so I get back to a normal life. I would even just like to spend an evening out with my husband having a couple of cocktails. It seems like forever since we have even been able to that simple thing.

He took me off of the prednisone back in January since I have been on them for so long with no help. I'm waiting for a call back as to what his suggestions are to take for pain since he made me feel like he can't Keep refilling the hydrocodone. A date night would be great! I think it has been about 2 years!!

Lovedbuy2, My Internist prescribes my pain medication as she knows what pain I'm in. I suggest you go see your GP. I find some/most surgeon's are unrealistic in assessing pain after the fact - plus they do not see us often enough to continually prescribe pain medications. I see my Internist at least 4 times a year and she manages my pain medications along with most of the rest of my medications as she checks up on my health problems. She has been managing my pain since before my surgeries 3.5 years ago. My Mayo GI knows the Norco - hydrocodone pain medication I take, understands why and has never questioned it.

It is bad enough that things are not working as planned and then add the anxiety of loosing pain relief is mean!

wish765,

Good for you! I'm sorry you are facing corrective surgery but it looks like you found the perfect person to do it AND he is going to make your first surgeon well aware of how me messed up. Another teaching moment so that hopefully he will never be an arrogant jerk to another patient again.

Please let us know how you are doing.

TEMARIE you hit it on the head with the nail. Anxiety is exactly how I should put it when I get down to 4 or 5 pills left and knowing I have to call in for another script. It is then when I stop eating to stretch out those pills as long as I can because these Dr's make you feel like your doing something illegal by asking. Any you are absolutely right my GI back in my old town, just recently moved a month ago, never questioned my pain and actually cringed when I would walk into the office because he could see the pain in my face. I would wait so long to ask for something for pain. I need to get more Dr's set up here in my new living location.
Thanks!

Loved by2: have they checked the size of your uterus? My surgeon very recently toldme that if the uterus is oversized. It causes horrible pain, urgency and retention issues. In my last endoscopy - he used the scope to push up on my uterus and when he did so, some blocked BM came out. He realized that when my pouch needs to expand, it's putting pressure on my uterus which is then Pushed up putting pressure on my bladder causing the sense of urgency; however, since there is all of this pressure and weight these organs aren't used to, you can't just simple relieve yourself. It's very very painful until things are just at the right angles to relieve little bits.

My dr ordered an ultrasound of my uterus to measure it and we are discussing next week but it's his initial thought for it to be removed. He said he has had women that didn't have room for a pouch at all until the uterus was removed so he said it's possible that they thought there would be enough room but due to pouch expansion, there just isn't.

What do you think about this as a possibility?

Thanks. Good luck to you! It's sad to think about this as a possibility but if it gives the pouch all the room it needs - which would allow it to expand even more then....this really may something to improve our quality of life. So far for me, the quality of life score is pretty darn low.
Wendy

Never thought about that. And of course was never told about it. I do remember a dr telling me about 7 month's ago that she thought my pouch was too big for me...? But that's about it. Thank you for your thoughts, it's always good to have an opinion when the Dr's have no answers and I'm constantly saying well I've learned of this or what about this...
I'm recovering from another temp iliostomy I just had 2 weeks ago in hopes to heal the bottom and rid some of the pain I was having. ....BUT on another note and becoming a little questionable as to why I had to go through this. ..I'm having bouts of diahrea, just start 2 weeks post op, but about 5-7 times a day from my bottom not just output in my bag. I know loop ileostomy, which I have now, allows some stool to pass but mainly mucous and usually only 1 time a day or every few days!? Any thoughts? I mean what is the point of going through this if I'm still having to use the bathroom 5+ times plus output from my ostomy.

i experienced urinary retention after my j pouch surgery.

the CT scan of the pouch came up clear. The urologist thought maybe some nerves had been bruised but my surgeon thought that wasn't the case because my sexual function was unaffected (i'm male) and these nerves would be more likely to be bruised than the ones controlling the bladder. he thought maybe something was pressing against my bladder due to the anatomy changes in the pelvis.

anyway i was taught to self catheterise. i did this for a week or two and the problem just cleared up.

best you get the pelvis scanned, i have read on here that some have had pelvic abseses that affect the ability to void urine

lovedby2,
It sounds like you have to be miserable. What does your surgeon say about you having so many BM's? If that much waste is getting through I don't see how you are getting any benefit from going back to a stoma

I hope you can get some answers and pain relief ASAP.

Had my appointment on Thursday and he ultimately was in shock. He took the appliance off and looked at it and watched it for about 5 minutes. He agreed with what I said and what anyone would say, what us the point! He said it looks as if the stoma part 5 hat us suppose to allow a little stool through fell back into my stomach or retracted. He said 2 options, wait a week to see if it corrects itself or slows down or back to surgery to turn the loop iliostomy into an end iliostomy. Of course I'm waiting a week but I'm pretty sure it's going to end up with me back in surgery.

I'm still have 5+ bm's plus output in my bag so it's a double whammy.

This is frustrating and yes TE Marie very miserable. Painful as well because my stoma looks like it never healed to my stomach and is open all around the stoma! Ouch!! And of course the skin is getting raw due to the stoma being flush with my stomach. Which causes me to have to change my appliance daily sometimes I get 2 days out if it.

Lovedby2,

What a nightmare, or should I say all day and nightmare!

I hope that you now have medication for pain relief, which should also help slow your system down and help with dehydration problems. I noticed that you have had dehydration problems in the past. I can relate as I still have hydration problems 3.5 years after take down. I went to the ER recently because I thought I was having a heart attack. I had all the symptoms but one for a woman having a heart attack, but was dehydrated. I felt a lot better after a bag of fluid.

I'm sorry it looks like you will probably need further surgery but have read in here that permanent ileo's are better than loops so maybe it will be for the best. People that have 3 stage j-pouch surgeries have permanent ileo's after their first surgery and then the loop ileo after the second step.

What kind of inflammation did you have that caused the need for you to go back to a ileo? Was it cuffitis? I have chronic cuffitis and IPS plus abdominal pain of unknown origin. I believe it is messed up nerves and/or adhesions from 5 open abdominal surgeries - no one has figured it out yet. I have an appointment with my GI at the Mayo Clinic this week and am scheduled for a CTscan, pouch scope and GI X-Ray (barium). He also has scheduled an appointment for me with a surgeon. During my last appointment we discussed the possible need for additional surgery. My quality of life is around zero so I'm hoping for a miracle solution.

Sorry for blabbing on about me. I didn't mean to turn this topic into a dissertation about my problems but oops I did it again. I'm having a very bad day. I don't think it's as bad as yours Lovedby2

Take care, he listened, he saw and you have a plan.

Hi, thought I'd chime in, might be of no help because I'm a male. I've had similar problems with difficulty urinating and emptying pouch also rectal pain. In my case the problems emptying the pouch were derived from my rectal cuff being left too long, this area would become inflamed and cause an ache in the back passage. Straining worsened symptoms. A rectal stump that is too long and inflamed will put pressure on bladder and urethra which i believe caused the difficulty passing urine. I also developed an infection in my pelvic cavity which most certainly worsened it. Taking Certain positions when peeing will help, lightly coughing to relax the muscle and where possible avoid straining. Ibuprofen will work wonders for rectal discomfort, but be wary of staying on to long as it damages your stomach lining.
Hope that helps a tad! Slàinte agus tàinte! (Health and wealth to you)

My husband is going through a similar thing. He had his takedown surgery about 4 weeks ago. At first his recovery was going extremely well but on day 6 things changed dramatically. He has severe pain off and on throughout the day/night and has a very difficult time urinating. He can not urinate without having a BM. He also can not have a BM sitting or squatting, he has to stand up. He finds that if he tries to sit then he has to strain to get even a small amount out and the pain from straining is unbearable. He makes multiple trips to the bathroom (again, having to stand up for a BM)before he feels like he has completely emptied. The surgeon says it is most likely related to nerve damage or inflammation and both will return to normal over time. He gave my husband a CT scan 2 weeks ago and did not find anything. The next step is an MRI which we are calling this morning to schedule ASAP. I still don't understand if this is a normal thing that has to work itself out or something is really wrong. We worry about additional surgeries however they would be worth it if he could get back to normal. The way he feels now is unacceptable. The pain is excruciating and he can only use the bathroom in the privacy of his own home.

Graemek- How were you diagnosed with a long rectal cuff? Are there any plans on another surgery to have it shorten? Your symptoms sound very similar to my husbands.

I'm a woman but can tell you from my experience that at 4 weeks this doesn't sound unlike my experience. I still have usually have a BM whenever I urinate and vice versa and my take down was the end of 2010. In the beginning I would stand up and sit down over the toilet and sit on the toilet and bend over to achieve another BM while there. I learned that if I got up and started walking around I'd be right back there in 5 minutes going again. I'm glad he is going to his doctor as I did have problems later on that I should have seen my surgeon or GI about sooner than later.

Also bending over, etc to get the gas to rise will help expel his BM's and with gas pain.

I wish him and you well.