|
Post by Todd on Mar 24, 2011 23:39:55 GMT -6
pamb, you'll get more responses to your post if you post that in the general forum.
as I understand it, it does get better but you measure "better" by months and years and not days and weeks.
|
|
|
Post by kandrews on Jul 29, 2011 11:56:58 GMT -6
new to forum too... have the same saddle numbness and bladder problems. So glad to have found this forum, but then also sad because have been reading how long my numbness may last.
|
|
|
Post by murphy626 on Aug 7, 2011 20:39:19 GMT -6
New to this forum, had my first surgery 01/08, second 02/09. But had bowel & sexual function issues since 2007, more than 4 years! Then bladder problems hit after my second surgery. I have a supra-pubic bladder tube catheter (a tube surgically implanted between my groin and belly button). Still have unbelievable infections from the tube and sitting in a wheelchair. I've seen worse in rehab hospitals but the comparisons still don't make me feel any better. This is a never ending nightmare. I'm in a wheelchair now for over 2 years. Constant pain that no one understands so I stopped saying it. I use a concoction of Senekot-S, acidiphilus and ground flaxseed to relieve my constipation, works after 2-3 attempts. I don't use it the day before or the day of any appointments to avoid any accidents. Drink water all day (sometimes I don't) for constipation and to offset bladder infections. I take Alka-Seltzer and Cystex (concentrated cranberry juice) to ward off infections. Also, people seem to think I'm OK with the exception of my legs and I'm tired of repeating the gory details (the details upset them and more importantly me!). The only peace I get is when I sleep for 3-4 hours (oh did I mention I have insomnia too) but then I wake up and the nightmare continues. Sorry for the long winded post but now I feel a little better venting to people like me.
|
|
|
Post by rustylynn on Aug 18, 2011 12:55:14 GMT -6
bigwignh,
Was just going through some of the comments and came across yours. I keep thinking of you~ I know the whole "45" comment, I'm with you and understand the pain. I hope you are doing better and things are going better. Please let me know how your doing. Rusty
|
|
|
Post by greggerin on Sept 6, 2011 5:06:27 GMT -6
I lost both my bowel and bladder seven years ago with my first operation. I also have a lot of numbness. you learn to manage it all. You learn to switch your mind off and to treat it like cleaning your teeth. It is just part of the routine. I am 47 and female by the way....
Of course people are horrified when they find out but most people dont know anything with about me..... so thats the way I keep it. however I am willing to share if someone has a question. I have been going at this for a while and the only good thing about this is you get good at handling it. in saying that it was horrific for 7 years and then I just let all the worry go. I wish I knew how or why I did that but I just woke up after my 8th surgery with a sense of calm and it wasnt the drugs... ha ha.
|
|
|
Post by chefpattyo on Apr 8, 2012 0:28:42 GMT -6
all I can say is you all came to the right place.we are also on facebook if you dont feel like you are getting enough information.I would say if your not having bowel movements for weeks at a month at a time you need to see your neurologist IMMEDIATELY before you have some severe back up issues that may be life threatening.He can also treat you for your pain.If you dont get the treatment you need get another doctor.YOU DO NOT HAVE TO LIVE IN PAIN FIND A DOCTOR WHO WILL TREAT YOU THE WAY YOU WANT TO BE TREATED!!! There is no reason to suffer.I hope you all get the help you need and dont take no for an answer there is help out there you just have to find the doctor who fits you!!
|
|
|
Post by sikorskig on Apr 17, 2012 18:11:26 GMT -6
When I had constipation issues, Miralax worked well for me. Put it in your coffee in the AM.
|
|
|
Post by suzzie25 on Aug 5, 2012 11:10:00 GMT -6
i can relate to the bowel issues..If I go any where I have to use the bathroom..and at night I am getting up two times..its exhausting ..my bowels are slowing down so I have to take laxatives to go but lately they arent working..omg what else could happen ..I had my surgery in 2001 and I am walking but dont have much sensation in both my legs actually from my waist down..the pain is constant and i get tired easily. I went back on my anitdepresants and am feeling a little better i cant go off them again i get to sad i lost my mom last year and she was a big support for me. now i am searching for friends that i can do things with. i have so many limitations now..like taking a simple walk can be task ..i usually use a cane if i even atempt to take a walk....
|
|
|
Post by tpowell5497 on Sept 19, 2012 8:35:14 GMT -6
I have loss of sexual, bowel and bladder function/sensation. Bowel is the worst out of the 3. For females at least for the most part we can have sex and at least go thru the motions for the benefit our husbands. My heart goes out to the men. Bladder problem - I can go on my own which is a plus but by the time I have the feeling I need to go I REALLY need to go. I have mobility issues since left leg have partial paralysis and with all the pain and weakness i walk with a quad cane and AFO leg brace so I have to drop whatever it is I am doing and find the bathroom. I do try to go before I go out but with four kids sometimes errands run longer than I expect and I pray I can get done fast to get home before accident. I have thank goodness at least made it to my car before I would have accident but still bad for my kids to watch their mother pee in her pants. I have reluctantly started wearing Poise so no major accidents at least that they can see. Bowel is the worst because if I take all the stool softners or other stuff I could be in the middle of store when it kicks in and can't make it to bathroom in time which has happened also they get too loose and leak. If I don't then I could go 2 weeks or longer before I have bowel. I try to do suppository so I do it on my time.
|
|
|
Post by von on Jan 15, 2014 13:11:25 GMT -6
Hang in there, I'm right there with you guys.
As far as pain, I am immune to opiates. I developed a high pain tolerance dealing with the tumor for 10 years without pain meds at all. I went through spinal surgery (1 foot incision, 4 vertebrate removed and replaced) with ibuprofen and tylenol. The pain was nothing compared to the nerve pain I've had post radiation. It's a lot like having a root canal with no deadener, but from the waist down for me. I've gone through one med after another and nothing seems to help. Wanting to die has little to do with your state of mind (positivity and whatnot) and more to do with the fact that the pain is so bad you just want it to stop. So hang in there and keep trying and know you aren't the only one. You just have to try to keep fighting, and try different things. Right now I'm doing low dose tramadol and gabapentin, though looking into other pain alternatives, such as medical marijuana. It's an arduous and frustrating process and for me is complicated by the fact that the pain causes. I found a neurologist who is willing to try different meds. I've tried most everything. :/
I didn't have bladder problems before surgery/radiation. Surgeon was shocked, due to tumor location. Keep asking me over and over again, but I told him I didn't have problems. Post radiation, I've lost bladder control. Now I'm having to work through those symptoms as well. Sex is difficult but I have a partner who is patient and understanding. I'm frustrated over the whole ordeal.
|
|