I must say that this forum has been one of the most helpful resources to me since I first learned what a j-pouch was. It played a great role in my recovery from my first j-pouch surgery and played an equally important role in my life leading up to and after takedown. Thanks to whoever created this.

On to business. This is definitely something no 28 year old guy like myself wants to admit, but it has been troubling, to say the least. I'm curious to know if any other guys who've had j-pouch surgery fall into that small percentage of guys who continue to have ED more than a year after their initial surgery. It is hard to believe that it's been 3 years for me, and while I've been a trooper dealing with it for the first year, even two, three years without a natural or drug induced erection has become very frustrating. What's worse, is that it seems that I can get no love (no pun intended) from my urologist. I mentioned that I'm 28 years old, right? I'd like to think that, despite my being single, that my male urologist could have a little compassion on his patient who has been deprived of the joys that come with an erection on demand.

Sorry...had to vent a little. :-) Anyway, just curious, just wondering if anyone can relate. Wondering if there are new treatment options on the horizon. Wondering if there's ANYTHING else I can try. Viagra, levitra and cialis are all no-go's. I've tried the injections and had some luck 2/3 of the time and scares during the times that it worked. But honestly, I certainly hope that I won't have to "stick my *****" for the rest of my life.

Hope y'all don't mind my sense of humor. My glass is always half full, btw, but even the happiest folks get frustrated and have to vent from time to time. If you do not want to post a response, please feel free to send me a message.

Since no one has responded, I thought I'd chime in and let you know that indeed you are not alone. There are several here who suffer with prolonged and/or permanent ED as a result of nerve damage from this surgery. If you check elsewhere, you'd find that it is a risk with any surgery involving a rectal or deep pelvic dissection (such as permanent ileostomy or prostatectomy).

While it may not seem like good news to you, the fact that you do respond to the injections means that at least your vascular system is intact. After three years, I think you can assume that the nerve damage is permanent. If you find the injections to be unsatisfactory, you may want to inquire into penile implant surgery. Implants have come a long way in the past two decades. They used to be semirigid all the time, and it was not the greatest thing to be walking around with a permanent erection (unless you are a male stripper!). The newer designs have a valve in the scrotum that allows you to choose when the implant fills and causes an erection.

The only obstacle I could see is if the urologist was afraid to do this surgery because of your past surgical history. But, the area of the j-pouch would not be entered. Also, some articles I read indicated that you could likely loose whatever erectile ability you currently have with this surgery, and it may not return if you had to have the implant removed.

Here are a couple of links you may want to check out for more information. The second one also includes photos (so you can see how natural it looks):
http://www.mayoclinic.com/health/penile-implants/MC00056
http://www.penileimplant.org/

I hope you get the help you need. Since your urologist does not seem to think your issue is particularly troublesome, perhaps it is time for a second opinion.

Jan

I was 28 yrs old when it started for me the uc but at 30 I had my Ed now 33 so I know wht your dealing with and i,m married with a wife who wants kids and drives me crazy about it. Anyhow I have had no sex in that time but could get partial erections as time went on with no meds.

Here is my suggestions that worked for me its like therpy every day or close do it your self to keep the blood flowing or to come back thats what gets the erections or get a pump may /not have to use for ever for a long time/ Also get a new doctor yours sounds like he doesnt wanna help I had same problem got a new one for taht problem and the new one does help. Also there is injections sounds scary but its to bad also use that witha med like viagra and such. If none of that works there is a surgery prodcure out there for young guys like us if all else fails... Look it to it I will find the site and send it to you later gOOD LUCK..

Hey guys I wanted to share my own experience with ED. I am 45 years old and 16 years post-pouchoscopy and have had pouchitis chronically for about 13 years. I never had any problems with ED until about a year ago. I noticed that I had more difficulty getting and maintaining erections and actually lost an erection during intercourse which had never happened to me previously. Being fairly active sexually it's something that was pretty obvious to me.

I recently had a complete physical done. I am about 20 pounds overweight and have slightly high blood pressure. My primary care doctor, an internist, opined that being 45 I am now at an age where ED begins to rear its ugly head for a lot of guys. Keep in mind I am still able to get an erection without cialis or viagara but it is noticeably more difficult. My doctor told me to drop 20 pounds, exercise more and that may help. He gave me a prescription for cialis and I tried it. I didn't think it helped at all and it gave me a headache. However, I must say my ED is not quite as bad as what is described above by the younger posters. I can still get the erection, it's the maintenance of it for prolonged periods that is the problem. When I was in my 20s I could have an erection all day and have sex multiple times with multiple orgasms. Now I am one and done. Kinda sad but I guess you can't be young forever.

I am trying to lose weight and the ED has given me incentive to do so. A bigger issue is the lack of exercise.

So far nobody has linked my pouchitis to the ED and given that my pouchitis symptoms have been constant over time, I tend to think age, excess weight and not being in good shape is at the root of my ED problem.

I hope things work out for you guys.

This message has been edited. Last edited by: DJBHusky,

Hey SLJ,
Just saw your post bud and wanted to let you know that you are not alone on this one.The only difference being that you are 28 with your whole sexual life in front of you and I`m 47, married with 4 kids when this whole mess happened with our"equiptment".I fell into the 3% risk factor of coming out of surgery impotent for life, what a slap in the penis that was.Thank God that I had had my kids by then and that I have the greatest supportive wife in the world or I wouldn`t know what I would have done on hearing the news that my one eyed whale had sunk for good!It`s been 5 years now with no fun for wee willy,but at least we have each other and thats what matters the most.Like you said you have to take things with a grain of salt or you would loose your mind in no time.I just feel so bad for guys as young as you when this happens to them.It makes my heart ache.But who knows with the way technology is today maybe they`ll come up with some new pill that will work wonders.Glass half full right!? I really like your attitude and frame of mind about this SLJ,I pray that one day things will look up for you and you`ll achieve your dream.God bless you friend.