www.incontinentsupport.org

I'd recommend seeing a couple's counselor together for a few sessions. I'd be a bit concerned that you both might possibly be making assumptions about what the other one might be thinking or feeling about each other, the incontinence and the way it's handled. Having an objective third party person to help you both express your thoughts might really help to clear the air and give you both ideas about what you can do together and for each other. Sometimes it's just easier to get the ball rolling as far as talking these things out if someone is there to help you get started.

CJ

I echo CJ entirely. I know adding anything more to your schedule is tough, but you two need counseling. Her lack of affection and presumed disgust might not even be consciously noticed by her.

Some people just aren't as affectionate. My wife is that way. I am the super affectionate, supportive, and affirming one of the two. That doesn't mean she doesn't love me or that she doesn't support me, it is just that she is a different person and shows affection in her way.

You are different and you hAve the years prior to this condition to compare. Has her attitude changed? Or are you more aware of her attitude because of your new sensitivity? I hope that it can be remedied. There may never be a "cure" for your plumbing, but through work your marriage can be helped. Have hope and do not despair of your self-worth! If you had been in an accident that left you paralyzed in a wheel chair and also unable to perform sexually would you still feel that way? We all hopefully married our spouses for "them" not the temporary beauty of today that can and will fade.

I pray for your strength!

Thursday March 12, 2015 Hi all!! It has been a while...I haven't had too much to add to this, though I'm here multile times a day. This forum has been a real lifesaver! On the marriage front not too much has changed. We have good days and then I have days where I feel like she doesn't hear me. We're so busy, I'm working 2-3 jobs, one of them is full-time ++ sometimes as few as 48 hours a week and sometimes as many as 90-100 hours a week all the while juggling 2 other part time gigs that vary by week as few as 4-6 hours to as many as 20-24 hours. Additionally the wife is working a couple of 10 hour days while I'm home, leaving me home to manage our two boys ages 5 and 3 1/2. So we are pretty busy trying to make ends meet. There's usually not much free time during the weeks,weekends,nights,holidays etc.....
Joanne was diagnosed with celiac disease at the same time I began having bladder issues, urinary frequency,weak stream, hesitation, light incontinence. So while she has been working at eating a gluten free lifestyle to manage her condition, I am wearing diapers and using Foley catheters to manage mine. So our life has been turned upside down in the last year but we have somehow made it through it all. I also had a nervous breakdown last March at the beginning of all this stuff happening all at once and spent a long weekend in a hospital heavily medicated. I lost about 5-6 days in total (2 days at home in a blind rage WITHOUT drugs or alcohol which I don't remember a bit of either day just before being hospitalized)
So I've been taking this supplement that she found online and ordered with pumpkin seed extract. Like a few other things I've taken it seemed to help a little bit. I still needed to be Cathed pretty much every week so far this year usually when I have a couple days not at work I'll have her put a foley in me so I can have a few nights of uninterrupted sleep. I'm not going 25 times anymore, maybe just 15 or so.....still more than average and still disrupting my normal life so foley's it is for now. So I finished with one supplement and I'm trying AZO bladder control formula to see if that is any better. I just started that a couple days ago after using the other one for 60 days. The AZO stuff starts off with 3x daily for the first week and then 2x daily after that for a period. We'll see how that goes. As of now the incontinence is as bad as it's ever been. I leak after every time I urinate, the amount varies but I can always feel it but it still can't be classified as "heavy" incontinence. Pads and pullups for work are sufficient to keep me dry. I still prefer diapers at home, like many of you, I'd rather be overprotected than under protected. I always make it to the toilet, so I always wear a diaper that can be refastened a few times, the leakage after urination is why I'm wearing protection. I can honestly say I've never just "let it go" in my diaper because the reason I'm wearing the diaper is to stay dry. I HATE being wet......HATE it......
So anyway, not too much has changed still using diapers/pads/pullups and foleys. Insurance pays for all catheter stuff but diapers are out of pocket. The insurance company has a deal going with Edgepark where they only pay a fraction of the billable amount for the catheter supplies. I'm ordering 4-5 times a yea with the total amount being $8-900 each time but Cigna is only paying $180-200 so, I'm glad I'm not paying for that stuff out of pocket.
This week I actually had a couple days off and though I was having problems with frequency and did have a night where I was up 3 times and she offered to cath me, I opted to live without it. I'm back to work for this week now and so no foley for me, but I've been pretty active here at work probably going 12+ since 0800.....I have grown to like the foley for giving me that peace of mind that I can travel in a car for more than an hour or have a large glass of water without having to run to the toilet immediately after. I really like drinking beer with the foley in too. I don't drink without it anymore because I'm afraid of what may happen.
Anyway, I'm still alive, life isn't perfect. Some days the road is rough. Our marriage isn't perfect but I DO love her and we are able to communicate a little bit. There are small breakthroughs now and again. I will get her to understand my situation because I'm persistent and determined to make her see things from my point of view. Thank You all for reading my blog, I really appreciate my friends on here who have taken time to write replies and share their concern. I have now reached the one year mark of dealing with this condition. March 2014 was the beginning of this wild ride.

Sunday April 5, 2015 well, a couple of interesting developments to report. I was taking the AZO bladder control supplement. It doesn't seem like it does much so I think I'm going back to the other bladder supplement. They both have pumpkin seed extract but at different dosages. I'm not sure either one of them does much for me but my wife keeps ordering it so I'll just take it. Still using diapers/pads/pullups as that's not likely to change. I got my first UTI last weekend and ran a fever for 30 hours before I could get medical attention. Ended up in the emergency room and it was quickly diagnosed as a UTI. I had the Foley catheters in and out a few times over the previous 2-3 weeks so that was likely the cause of it all. I've been without a foley for a little over a week right now and have suffered without it, I'm usually up 2-3 times every night up to as many as 8-10 times during the height of the UTI. So I don't think I'll ne going without Foley catheters either, though I'm a little gun-shy of having the foley back in because of the infection. I'm almost done with my 10 day course of antibiotics. Talked on the phone with a specialist in Boston that deals with disorders of the autonomic nervous system. I'm thinking I may try to get down there and see what they have to say. It would be a big trip for us as Boston is a solid hour+ away. Probably going to have a follow up with urology after the antibiotics are done, they want to see me. I haven't been there since June 2014 when I got my prescription for Foley catheters. The office told me that the doctor wanted me to do intermittent catheterizations and I told them that would be great if I could do it 25 times a day.......I said, that's why I use the foley!!!! Anyway, I don't have a lot more to report.......

I am so sorry to hear about your uti I knew it was only a matter of time given your busy life, even with your wife as a nurse.

I hope you can get someone to watch your kids so that you can get what you need done in Boston.

How is your marriage? Is your wife's condition improving or has she at least managed to deal with it? I think about the two of you often in my thoughts and am grateful my wife has been so supportive, although she is a tad resentful that my condition might be preventing us from conceiving. I hope during your next "update" there will be some positive news.

Wednesday May 6, 2015 well, a few other developments to report. Once again, Thank You to all my friends on here who have offered support, words of encouragement, or advice. I am continuing to take the bladder control supplement with pumpkin seed extract in it. It seems to help a little bit and I figure what can it hurt? I spoke to the doctor in Boston on the phone who deals with disorders of the autonomic nervous system and he held out very little hope that the problem that I have is a problem that he could deal with. He was very nice and extremely helpful and was more than willing to see me but he didn't think that there was anything he could do for me.so I'm not likely to make it to Boston anytime soon, I don't need to waste my time chasing doctors that aren't going to help me. I did have an appointment with the urologist who wanted to follow up with me after my UTI and he asked me how everything was going, I told him that I am still using the Foley catheters and the diapers.he asked me how many diapers a day and what kind I was wearing, I thought it was a little odd that he wanted to know what name brands I was wearing but I told him anyway. I told him that I understood that none of the doctors have thought that my prostate was enlarged but made the suggestion that I'd like to try Cialis for daily use just to see if that would help. I made a good case for trying the medication and despite his initial protest that that was not the problem that I was facing he gave in and wrote me a prescription for 30 days of Cialis. I've been taking that for two weeks now and it seems to be helping a little bit, though I had a Foley in for the last couple days.
I'm still a little bit gun shy of life without the Foley. I have been using Foley catheters for about a year now and despite the one UTI that I've had I feel like I have a hard time living without them. Some of that may be psychological but whenever I think of having anything to drink my next question is do I have a Foley and so that I can drink what I want and how much without having to worry about running to the toilet right after. If I don't have the Foley in I'm very very careful about what I drink and how much. When I have the Foley and I don't worry about it as much, I still stay away from anything caffeinated like Pepsi or Coke because those have proven to be a problem when I drink them, I don't even drink them when I have a foley in. Once in a while have a sprite but I don't usually drink that unless I have a foley in. I'm so careful about fluid intake because I've had a lot of sleepless nights. Things with the wife are okay, we have our ups and downs. I've tried to get her to come to couples counseling with me but we just haven't been able to get anybody to take the kids so that we can do that. I've kind of given up hope on doing that. It's kind of disheartening but every time I bring it up she just brings up the fact that we don't have anybody to take the kids during the day during the week. In the meantime I've been going to counseling by myself and the woman that I see is been very very helpful. I told her that I have had problems with my bladder several months ago but only just revealed recently the true depth of the problems that I'm having with my bladder. It's kind hard to talk about but I guess I'm among friends here and you guys all understand that is a difficult topic to approach with anybody because you've all done it.
Mm Anyway I guess I don't have a whole lot more to report I'm on this forum every single day but don't always reply to every single post. I'm grateful for all the friendships that I've made on this board over the last year or so and always look forward to being able to help somebody else as you guys have all helped me out. Keep up the good work!!

Tarlton, in answer to your question, my wife's condition is stable but celiac disease is for life and she's mostly ok unless she gets "glutened". People with celiac disease can't eat gluten. In fact, a person with celiac disease cannot even be exposed to gluten or they risk getting sick, for example my wife had a hand lotion that she really was fond of and couldn't figure out why after eating a gluten-free diet how she was still having symptoms of the disease. After some research, she found that the hand lotion contained wheat or wheat byproducts (gluten is a protein found in wheat) the gluten was being absorbed through her skin and causing the joint aches, headaches, heart palpitations, and fatigue. People with celiac often are misdiagnosed as having IBS. My wife had very little in the way of IBS problems. Anyway.....she's ok as long as she is careful about what she eats......I make every effort to support her in any way I can, but the kids and I don't eat GF. I like pizza and beer too much. Despite liking those items, I do make the effort to try gluten-free items that are in my comfort zone in an effort to show my support for her. And I am always her advocate when we are in a restaurant and she has to explain to the waitstaff the ramifications of a celiac disease diet. She likes it when I speak up for her and I have no problem being assertive..........

Monday June 15, 2015 well that hasn't been much going on with me other than the normal stuff. I'm still here every day checking the boards to see what's new in responding to try to help if I can help somebody out. All the while I have been conducting research and reading up on what's new in the urology field. The other night I was at work and I had some downtime. I was reading something on the national Association for continence website (NAFC) Found where they were referring to a condition as urgency and frequency syndrome. This peaked my interest and I googled that right away. I had never seen any condition by that name and I was pretty excited about it. As I got digging into it, it is really just another subtype of interstitial cystitis or IC for short, this conditions goes by numerous synonyms. Including painful bladder syndrome, many of the symptoms overlap OAB. There isn't much in the way of diagnostic criteria as a diagnosis of IC is a diagnosis of exclusion. There were many reasons that this struck a nerve with me when I read it. I found out that people without pain (like me) can still have IC due to the fact that the "pain" is subjective, it could be pain or the sensation of pressure related to tje bladder. 90% of patients diagnosed with IC are female. My urologist attempted to dissuade me from pursuing this diagnosis, but he clearly wasn't armed with the facts that I had. He said he hadn't detected any Hunner's ulcers on my last cystoscopy but I now know that 90% of patients diagnosed with IC don't have any Hunner's ulcers. Average IC patient goes to the bathroom from 15-18+ times per day. I'm in the 15-25 range, but close. Cystoscopies, and urodynamics tests typically come back normal. Patients are often diagnosed as having a psychosomatic condition because all the tests come back negative, this leads the doctors to give a diagnosis of somatoform or psychological, (I've been told both) the first diagnostic criteria established by the NIDDK and it was very strict. Possibly excluding as many as 60% of probable patients to fail to meet them. So there is a movement to develop,a modern set of criteria for diagnosis for IC. The research indicates that they couldn't reach a consensus on the new diagnostic criteria for IC, however they shared and understanding about symptom based diagnosis and it was decided that they could make a diagnosis for patient with urinary frequency, or urgency, with or without bladder pain.
The literature states that if frequency, or urgency continues for about 3 months without any improvement as a result of the treatment for other diseases of evident causes, the possibility of IC should be considered.
Clinically speaking OAB the diagnosis is identical to the one for IC. If the patient has IC anticholinergics are the first line treatment. The cure rate is 50% at best. It is not effective for IC, however the symptoms will be slightly improved (as I had improvent for a coupe weeks with Myrbetriq, before it abruptly stopped working in May 2014)........

Hello PB & J32,

I am sorry to hear about your bladder problems, so hope that they can be sorted out. I am now where you were, in regards to starting on this journey.
I have seen the nurse practitioner at my local doctor's surgery and am working towards getting things sorted, although I think it will be a long journey. I recently discovered that I have a prolapsed bladder and have been working very hard, trying to do the kegel exercises to correct this. I find the exercises quite hard, and confess that I feel like giving up, but I will continue onwards.
The last few days I have noticed that my protection hasn't been as wet as normal. I don't know whether this is down to the exercises, and whether the prolapse is healing itself, or whether it is because I am making a determined effort to get to the toilet on time. I am hoping that the exercises are helping, as I am terrified of the prospect of surgery. I won't discover the outcome of this until my next visit to the nurse at the end of September.
I wish you all the best !

aurora borealis.

aurora,

I hope your exercises are working so well for you that surgery will be unnecessary. Until the decision is made next month, keep up the good work, and keep us informed.