www.incontinentsupport.org

PB&J,

Hang in there. I hope our current cool weather is making your life easier. Have you asked your urologist about a stent? That might be one course of action for you.

Celiac disease is nothing to dismiss; it can be serious indeed. No wonder both of you are needed to shepherd your boys.

Wednesday July 30: Thank You, Patrick for the kind words.........I am not sure about a stent. Urology gave me the prescription for foleys and then pretty much washed their hands of me. I have been without a catheter for one week now for urinary frequency continues and I am in the 18 to 25 times per day rain present. Up,from 15-18 times per day. I am still having the usual incontinence, although it is on the lighter side and can be managed with a pad or a pull-up. I like the security of a diaper and so I usually wear a diaper when I am home from work. I am using Attends breathable and Tena Classic diapers, though not good for super heavy incontinence. They work ok for me, they are comfortable and I really like them. I use Depend for men for pull-ups and I have Depend guards for men for right now. I'm almost out of those so will probably go back to Tena pads for men. I've used these in the past and really liked them. Today I had an appointment with an endocrinologist she was very smart, she was very nice and the appointment went really well. Problem is she asked me what are you doing here? You are out of my realm of expertise. I figured when the PCP and nephrologist referred me to her that she would tell me just that. And I was right. She said my symptoms did not really coincide with anything endocrine related but she said she would do some research for me and get back in touch with me. I really liked her. I wish she was one of the urologists, she was just so pleasant.......but, there really wasn't anything she could do for me....at least she was pleasant. I was off the Wellbutrin and topamax (anxiety med and mood stabilizer) at my wife's suggestion (approved by the PCP) she hoped that was causing my problems. Going off the meds caused an increase in the frequency if anything (went from 15-18 to 15-25 times per day) so diapers it is. The urethral opening at the tip of my penis was pretty sore last week when the foley came out and I had some blood in my urine whenever I was up and about, indicating that the tip of the foley was irritating the bladder lining. I'm waiting for my delivery of duette catheters before the wife puts the foley back in me. In the meantime I'm roughing it out with the urinary frequency.......that's what's up today......thank god for diapers......thanks for reading all!!!!!

It sounds like you and your wife are both dealing with some pretty annoying problems (Thank God, not life threatening).

I am so sorry to hear about the strain all this is putting on your relationship. While I hope that they are going to be able to find an answer to your frequency problem, I am hoping you can keep up a strong front your family.

A healthy exercise in marriage is something I like to call "checking in." This is essentially asking your partner if he/she is happy and what you can do to make him/her happier. Some report this is good to do every week, while others do this daily. Especially when you are both struggling with a disease and (whatever it is you have) the stress, worry, uncertainty, fear and changes to what had been your routines is fairly traumatic. This is compounded with your young children, who are still looking to their mom and dad as invincible superheroes. I personally feel it is critical to maintain your marital happiness so that you can continue to support one another.

Never forget the time honored adage "Happy wife = happy life." Even if your problems are worse, treat hers with more care.

I am sure you are already doing these things, but I say them for anyone in a relationship in the hopes of alleviating stress and worry.

Good luck and good strength~!

Thursday July 31: Thank you for the helpful hints, Tarlton.....I appreciate the advice, I think I'll try "checking in" urinary frequency and incontinence are continuing along with one other monumental and extremely embarrassing symptom: impotence......this is terrible......like somebody is playing a cruel joke on me. I've come to terms with going 15-25 times per day and wearing diapers/pads/pull-ups 24/7 to stay dry.....I'm adjusting fairly well I'd say to all that......one thing I'm not willing to live with is erectile dysfunction.......I already have a PRN prescription for Viagra which didn't seem to work at all last night, leaving my wife disappointed and me feeling beyond hopeless.......

I know the pain you describe all too well...

Getting hard is difficult with this condition and even if I can get it up for the sex, I am a one trick pony. Going a second time is impossible without waiting upwards of an hour and a half, whereas most people my age should be able to go 2-3 times before they cannot go anymore. It is beyond embarrassing and requires extra stimulation

I had looked into penis enhancers to be able to at least please my wife, but given she is one of many who does not "feel" good with penetration, and requires external play to climax, I did not pursue it further. She wanted more connectivity between us anyway and not resort to toys which would cheapen sex.

However, that might be a thought for you if viagra is not working, even after an hour.

Thankfully sex is not the only facet of love that matters (despite what some would say)

We are all pulling for you and I pray you are able to both get answers and work out something in the bedroom to fix your sexlife.

Monday August 4: well....it seems as though the impotence has resolved on its own.........I had a few beers on Friday night and boy did I pay for that. I got about 4 hours sleep that night and was up at 0430 for the day on Saturday. I couldn't stop peeing. Saturday was my younger sons 3rd birthday and I was feeling like crap because of lack of sleep and anxiety because I couldn't stop peeing. So I spent much of the day in bed or in the bathroom, not feeling like doing much of anything. I must have gone 25 times just during the day on Saturday. I guess you all know where this is going by now......the wife finally put the Foley catheter in Saturday night......I slept a full 8 1/2 hours uninterrupted on Saturday night. Sunday we had a big birthday party for my little guy and a whole bunch of family and friends were here.....she left the foley in but changed from the bedside bag to the leg bag so I could be a little more portable. I've got this great leg bag holder from Urocare, it just looks like a knee sock with a pouch for the leg bag to slide in. With long gym shorts you can't see the bag or the tubing. It just looks like a knee brace. So I had the foley in for a second night last night and slept reasonably well. I also had a neurology appointment on Friday afternoon which I almost forgot to mention with all of the weekend's difficulties. The neurologist did a thorough neurological exam and didn't really think that I had a spinal issue, but did wish to schedule MRI's of the spine and brain to rule out spinal issues for sure and rule out a hypothalamic tumor and/or pituitary tumor. The brain tumor issue seems plausible but I don't really think that's the case. I don't have any neurological deficits. So he gave me a referral to see a neuro endocrinologist at Massachusetts General Hospital, in Boston which is an hour from where I live. So that's coming up at some point......

Sounds like you have the same leg bag holder that I have used for years, best one out there that I found, and I looked for a while! Stands up well to washing too, I air dry when needed, Puffy

_________________
Puffy
BC, Canada
Fighting the "Bladder Battle" since 1995

Sunday August 10: Puffy, that Urocare leg bag holder is AWESOME!!! I have 3 of them.....so in the last 6 days I had the catheter out Monday night 8/6 got some soreness/irritation and what appears to be a sore developing just inside my urethral opening.......so I've been without a catheter for 6 days and the usual frequency and relatively light incontinence......still wearing diapers/pads/pull-ups depending on the day and what activities I'm participating in. I usually like diapers when I'm at home. I am most comfortable in them as I know I'll never have problems with leakage or feeling wet with my level of incontinence. Neurology has scheduled 4 different MRI's for me and they are scheduled at different times because they can't do them all at once because it would take like 4 hours and because they won't give me that much contrast all at once.....so they are going to do 2 and then 2 more with a day in between appointments. I am still waiting for a neuro endocrinology appointment at Massachusetts General Hospital. Additionally urology wanted to do a follow up with me after neurology had seen me, so I'm waiting to hear back from them. I haven't seen the urologist since mid June, so 2 months ago.....so that is what is going on right now.....

Wednesday August 13: got a nice message this morning from dd1983. Thanks for taking the time to write and express support and solidarity. I'm writing this "blog" to get things off my chest and to have a single thread so I can keep you all up to date while I bounce from doctor to doctor in search of some answers, or perhaps a cure. Latest update which has me really disheartened is that we can't seem to line up any help for babysitting so I can go to Massachusetts General Hospital to see a neuro-endocrinologist. So since I can't get any help with that, I cancelled the appointment. I really need the wife to go with me because she helps me organize my thoughts. I get to a doctors appointment and always seem to miss things or not ask the right questions. Inevitably I will get home and she will ask me if I asked the doctor something and I will say "I do not know" I get in the office and it seems like my mind goes blank. Since she is a nurse she always seems to know the right questions to ask. So obviously something so important, I can't lug two toddlers with us.....so, I cancelled the appointment.....seems like nobody cares if I deal with this or not......thanks for the support all.....sorry I'm ranting. I'm just so frustrated.....once again I feel so alone.......everybody has something better to do that day.......

Keep at it ! You are correct in your priorities. Kids do need to come first. I hope rescheduling doesn't bump you out a month or two and that this time someone can volunteer to watch the tykes while you and your wife get answers.