Not sure what to do for my loved one

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Hello all. My brother, a young-adult male in his early 20s, has been suffering from incontinence (I think urge or overflow?) for 2+ years and has been seeking medical treatment for most of that time. He is a very private person, and so I don't know a ton of details, but I do know that he has tried several different medications, tests, and some sort of electrical therapy. He has done this through his general physician and then a urologist. Apparently his urologist has run out of ideas, and he has lastly been prescribed physical therapy.

My brother is extremely depressed and has become a complete shut in living with our parents. I have tried having conversations where I ask him what if this is something he can only learn to manage rather than fix? He insists that he can never be okay with being incontinent, and that going out in public is bad for his desire to live.

I have a couple questions for you all. First, I am wondering if there is some other obvious specialist or treatment that my brother should pursue with the doctors. If your incontinence cause was successfully diagnosed and treated, how long did it take? Is it normal for diagnosis to take 2+ years?

Second, if this is a condition my brother will have to learn to live with, when did you accept that in your own treatment, what caused that acceptance, and what have you done in your own life to manage it?

Also, any words of advice you can give to a sister who really loves her little brother in this situation would be much appreciated.

Thanks.

 

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You are a great sister. Within the world of urologists, there are specialists in incontinence. Be sure that your brother is seeing a urologist who specializes in tough to treat incontinence. They have the ability to offer advanced tests and treatments that might help provide insight into his condition and, it is hoped, provide some relief. Usually these doctors are part of large practices at universities. Look for physicians who specialize in overactive bladder and urinary incontinence. Also look for people who offer PTNS, Sacral Nerve Stimulation (sometimes called by the brand name Interstim) and Botox injections. Those are the "third line" (most advanced) treatment options so you'll know you are seeing a specialist if they offer those treatments. Depending on the cause of his conditions, these third line treatments will usually offer some amount of symptom resolution - at least enough to help him manage and not feel that he has to remain home. I wish you both luck.

 

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It's important for your brother to never give up hope. Being at so young an age, he has his whole life ahead of him. I, like many other urinary incontinence people, learn to live the best they can with the situation. My incontinence was the result of prostate surgery I had 10 months ago. I had no other choice than to wear Depends and pads to absorb urine leakage. Kegel exercises (see many references to these in YouTube and throughout the internet) will help. I believe I have found a quicker way do the exercises by combining electric stimulation of the urinary sphincter with regular kegel routines. If those things don't work, surgery can be done to create an artificial sphincter to stop urine flow. It is great that he has a sister like you who can be so supportive of his situation. Here's wishing you and your brother the best for all that lies before him.

 

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First and foremost, you’re an amazing sister. He will need all the support from family that he can get. You’re doing the right thing.
Second, there is nothing wrong with wearing protection. I wear diapers 24/7/365. They are simply underwear. No one knows I am wearing a diaper. No one looks at my crotch or ass and thinks “hey, that guy is wearing a diaper”. I wish the diaper stigma would just die.
Third, show him this forum so he can vent and speak to others who are in the same boat. I’m 39 and have been dealing with this almost all my life. It helps to be able to talk to people that you relate to.
Fourth, show him sites like NorthShore care. Don’t settle for mediocre products like depends. The owner Adam can tell him what products would work best for him and his situation.
Faith and finally, continue to be supportive and caring. He is not alone in dealing with this!!! I’ve dated, I’ve married, I’ve divorced, and dated more. Love, true love, knows no boundaries. Life for him is, by far, not over by any means. He needs to learn (and it’s hard) that this cannot hold him back from any goal(s) he has. There are actors (Samuel Jackson) who are incontinent and have made massive mile stones in life.

 

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I would highly recommend that you look into counseling for him. He seems to be struggling with a significant depression. The incontinence probably contributes to it at least. He also seems to be making indirect vague suicidal comments. I think that would be a place to start. I also think getting him involved in a forum would be helpful, if he thinks he is ready to reach out.
Once he wants help there is a plethora of info on this site and others. He had to be ready to receive it though.
I don’t know if Samuel l Jackson had incontinence. I doubt it because I have never seen any articles from reliable sources. Outside of that life exists with incontinence. Yes we may wear diapers. We also travel, have kids, have fulfilling careers, are still sexually active, date, get married. There is still hope.

 

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Thank you all for your kind words and advice. Please keep the good advice coming it is very helpful.

We have been trying to convince my brother to see a counselor or seek other mental health treatment, but he refuses. My mom and I both suffer from pretty serious depression, and are thus aware that my brother is exhibiting warning signs. Unfortunately there’s not much else we can do since he’s an adult and we cannot force him into treatment. He insists that he would not be so depressed if he was not incontinent, and refuses to try any sort of mental health treatment in addition to seeking medical treatment.

I have mentioned to him that there are online support groups, but I do not think he has looked into them. Unfortunately he is so private and reclusive that I barely can get any details from him of what he’s looked into or tried. He didn’t even admit to me this was the “health problem” he was dealing with until a few months ago.

 

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Hey mizkella, its awesome that you're doing your best about helping your brother. Im 23 and been dealing with IC for awhile now, and have recently staeted wearing 24/7. I wont sugar coat anything and just come out and say it, IC sucks and can be hard to come to terms with. I myself am still trying to fully accept that this is part of life. Which at the end of the day its only a part of it not all of it, you should tell your brother that. That his IC doesnt define who he is as a person and that he shouldn't let it control his life.

 

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Also, to quick point out. Incintinence is not a condition of its own. It is a result of a condition. Has he been to a neurologist? Has he had any MRI or CAT scans? Has he been to another urologist to get a fresh/new opinion?

 

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A very quick Google search confirmed Samuel Jackson deals with these issues.

 

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Definitely keep encouraging him. I am 28 and have been completely urinary incontinent for 6 years now due to head injury and wear diapers 24/7 as a gentleman above said no1 has ever noticed as no1 is looking for it. Sites like this and www.incontinentsupport.org can help alot with information and support and if he wants to talk about it to someone who will understand I would be happy to try and help you

 

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I became incontinent when I was 20. I didn't go out in public for a year. That's normal for some. It's ok to not accept your incontinence and try to fix it. That's really good. Until then, he will have to deal with today. If he wears actual diapers, make sure they are quality ones. Why don't you take him out on a brother/sister date. Just in the car. Drive thru food. Eat in a private place like a park. After you've eaten, take a short walk. Be in public, but not around the public on this trip. All should go fine. Work on that. Then try a small gas station to buy something. Slowly work up to full public interaction. I did this. My first time out, I'm pretty sure that everyone around me knew I was diapered.im pretty sure there were people watching with binos and telescopes. Pretty soon however, the telescopes went away and so did my fear of exposure. Incontinence isn't bad if you don't think it's bad.

 

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I spent my first year of incontinence shut in as well. I was so horribly embarrassed and frustrated and was trying everything I could to solve my problem and not be discovered and testing every product I could find to finally get one that worked and balanced protection with discretion. Seeking medical attention was extremely hard but worthwhile even though it hasn’t fixed my problem. Finding support like this group has been invaluable. I’ve learned a ton and most importantly realized that I’m not alone and that this issue is NOT the end of the world or the end of my life as I know it. Adapt and overcome. Diaper up and get back out there! Good luck

 

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I can't agree more vestalm! Seeing a Dr may not show what's wrong. But what might be more important is a Dr can prove what isn't wrong. For example, a spinal tumor causing pressure on nerves. Cancer. Other bad or terminal things. You might not find out why your incontinent yet, but at least you can rest assured of the why not.

 

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Mizkella,wonderful that you csre and are helping. I am not qualified to make a diagnosis, but i strongly suggest you have him see a psychiatrist or ask the urologist to refer. The symptoms sound a lot like severe depression, which can become dangerous if not treated.

 

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Mizkella, just keep loving him! Love is the most powerful "force" ever given. You love him regardless of his diagnosis, treatment, or mechanism for maintaining himself. Diapers, briefs, pads, underwear or whatever its called is a just a tool just like his medication. I'm more embarrassed by wetting my pants in a Disney gift shop, on my walk back to the office from lunch, defecating while shopping in Lowe's, Christmas shopping with my wife, or on the way to my barbershop appointment. These scenarios changed the course of my day much more than wearing a different whity-tighty out the door in the morning. In all the above real life scenarios, I did not have control of the situation. I had to literally change my plans for the day instead of just changing my underwear and going about my day.

 

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This isn’t the way any of us figured our lives would turn out but there are lots of options out there!! I was referred to the Mayo Clinic here in Minnesota after my motorcycle accident and was given many options. I have had more tests done and needles poked and meds prescribed than I can shake a stick at!! My issue is both muscular and nerve damage and I have opted to manage it without meds or surgery as neither will give me full control, so I wear items that protect my clothing and dignity!! Just don’t give up and make sure you don’t take just one Dr.’s advice, do your diligence in research and tell your brother he’s not alone!!!!

 

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Adapt and overcome. Diaper up and get back out there! Good luck

Excellent mantra!

Totally on point.

Think I'll plug it into my private and daily self-motivation chants.

 

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@mizkella

Keep being you and being supportive. Some times that is the best we can do.