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. > > > > >
