It's because the bladder has atrophied to the point where it doesn't always work correctly. If I didn't have the sensation I do, I could probably live with it. In bed I can often raise the head of my bed and get the bladder to start draining once again.
I saw another urologist who works with spinal cord injuries and he concurred with my doctor. Right now I'm doing pretty well, but in a couple of weeks I'll probably start having a hell of a time again. I'm been putting this off since July 2011 when I was given a diagnosis. I tried doing all kinds of things and while they work sometimes, it's become too painful and dangerous. There's been a few times where I've gone into AD and thankfully the only thing that kept it from becoming a bad case of AD was the urine started began exiting through my stoma. Thanks, Quadius On Fri, Mar 16, 2012 at 12:13 PM, <[email protected]> wrote: > Did you find out why your suprapubic is not draining correctly? If it > were me, I would get a second and third opinion on why it is not draining > correctly. It might turn out to be an easy fix. My family doctor always > tells me don't ever go to a surgeon for a medical problem as their > treatment often revolves around surgery. > > As you say, these are long surgeries. I definitely would not have them > done close together. > > I haven't heard much about colostomy use. My friend had one, and his > biggest complaint was oder. Would it be possible for you to talk to someone > who has one? If you can't find someone in person, there must be chat rooms > for this. > > Just my quarter. > > Dan > > > On 3/15/2012 8:16 PM, Quadius wrote: > > Thank you John for the feedback. I am worried about the length of both > procedures. They told me the ileovesicostomy takes around three hours and > I have been told how long the colostomy takes. I am prone to pneumonia, so > that is definitely a worry. > > I'm also concerned that having two new devices on my body might be a > little bit too much at one time for my caregiver's. I use lay people and > they can be trained, but I don't want to overwhelm them. They are family, > but I don't want them to feel like they're getting in over their heads. > > That's at least what is going on in my mind right now. > > My suprapubic really isn't tenable any more. It doesn't drain correctly > about 20% of the time and I have some determined this pain at different > times. Luckily right now the pain is not too bad and the catheter seems to > be draining well, but that often changes like the weather down here in > Florida. > > I don't like going into my living arrangements over the web, so let's just > say it's a logistical nightmare. That's why I am really considering the > ileovesicostomy as a necessary treatment rather than an elected one. > > Thanks again everyone; I do really appreciate all the feedback. > Quadius > PS I still have some time to make my decision. I'll let you know which > way I decide. > > On Thu, Mar 15, 2012 at 5:42 PM, John S. <[email protected]> wrote: > >> dear Q, Don't Freak out. Last Sept. I had to get a supra-pubic >> catheter,a J tube and a colostomy so they could remove part of my >> stomach. Now I wish I had the colostomy long ago. 36 years of watching my >> diet. (wondering how I got a damn ulcer). You have to let gas out of the >> bag now and then, it's called burping it. I still use acidophylus to keep >> the stool well formed. That way I can put two needle holes in the high side >> of the bag and not mess with burping since I only get two aid visits a >> day and I can't burp it myself. I am using more cologne. I wish you luck. >> >> john >> >> ------------------------------ >> *From:* Quadius <[email protected]> >> *To:* quad-list <[email protected]> >> *Sent:* Wednesday, March 14, 2012 8:37 PM >> *Subject:* [QUAD-L] Re: colostomy? >> >> I forgot to mention I am just about 17 years post injury. That will >> happen in another couple of weeks. >> >> On Wed, Mar 14, 2012 at 8:00 PM, Quadius <[email protected]> wrote: >> >> Well, I'm back asking questions again. I went in for my consultation >> about a week and a half ago and unfortunately I've had too many days of >> feeling bad wasn't able to get back with you all. >> >> In the consultation for the ileovesicostomy the doctor noted that I had >> had a previous doctor recommend that I think about doing a colostomy in the >> near future. Well, now they're wondering if I want to consider doing a >> colostomy at the same time I am having the ileovesicostomy performed. I'm >> about 90% sure I'm going to have the ileovesicostomy, because I really >> don't see any alternative. >> >> As for the colostomy, everyone I talk to down here seems to think it's a >> good idea, including at least one quadriplegic who has one as well as >> ileovesicostomy. >> >> When the doctor made this recommendation I was having a terrible time >> with my bowels. Fortunately he was able to diagnose several of my problems >> and I have improved quite a bit since that time. I am still having >> difficulties though. The list of fruit and vegetables I can't eat or can >> only eaten very limited quantities is much higher than the list the list I >> am able to eat. My lactose intolerance has gotten progressively worse, to >> the point where I almost completely have to eradicate dairy products if >> possible. I have difficulty processing tomato sauces and am having trouble >> almost every time I go out to be in a restaurant. >> >> Let me put this into perspective. I don't really have problems with >> incontinence, but when I do have problems it's usually terrible pain >> followed up by very loose stool. My bowel program has gotten much longer >> over the last year and a half. A lot of this is because my body produces a >> lot of mucus after the stool has passed. We usually check about every 15 >> minutes and sadly my bowel program is now averaging around 3 1/2 hours. We >> can probably cut it down to two hours and 45 minutes if I didn't worry too >> much about the mucus and then had my caregiver cleaned up in the morning, >> but she asked small fingers and I also risk having the mucus attack while I >> am seated in the wheelchair if I do this. >> >> I'm leaning towards having the procedure done, but I haven't really heard >> that many negatives other than the few comments I saw all on one forum. I >> know darn well there's got to be negatives, so I'd appreciate if you could >> pass them on to me. >> >> One of the quadriplegics who I talk to last year told me about some sort >> of burping, but he didn't elaborate. I do not have the ability to move my >> hands or arms at all, so I don't know what would happen if I need to do >> something like burping. >> >> I'm going to continue to search the web, but I would appreciate some >> feedback. You guys have been great on the ileovesicostomy and I really do >> appreciate it. These are, as all of you know, decisions which we have to >> live with. Sure I guess they are reversible, but I have known one person >> who had his colostomy reversed after he went into remission and he had a >> horrific time getting his bowels to work properly once again. In fact, he >> ended up in the ICU on life support at one point. >> >> Thanks everyone, >> Quadius >> PS hopefully there are too many problems with this e-mail. I am in need >> of a microphone change. :-) actually a soundcard would probably be better, >> but I need something which improves my accuracy. >> >> >> >> >> > com ----- >
