I know straining doesn't help. It just ends up that way after a certain amount comes out.
Like I have said in other posts I have to get my weight back on.
I'll be blunt. It's gonna kill me if I wait to find out ways to MT it.
If it is not working after two years it's not gonna work. I don't want the pain cramping blockages and everything else just to save it. It know an appliance has its problems but nothing like this. I feel as though it is worse now with a pouch than with a colon.
When I went into this they just wanted to bag me. But I wanted to try the Pouch. I did. Disappointed it doesn't work properly but I have to face facts. I don't believe I have the time to run to 3-4 more opinions. I have two already. And they see no reason why it should not be working properly.
So.... Now I am losing sleep literally. Nobody wants to lose their pouch but I am not going to spend two more years to try and find an answer.... And then there are no promises.
The one thing that concerns me and the people around me is my weight. I look like death is coming. Especially to my wife of close to 40 years. It scares and upsets her to see me this way.
I do see that I am skinny... Too skinny.... But I don't see what others see as said above.
Yes. I am stuck between a rock and a hard place. I don't want to lose it but I also cannot keep going this way. Sure.. I would like to be talked out of surgery again and not wear a bag.
I just have to get my mind wrapped around this.
It's full of questions that cannot be answered quickly.
As you can tell in my post my mind is a whir.
Richard.
Edit.
Add on...
I believe I will gain the weight back and be able to sleep all night. It will be tough but time will get me used to the bag. I am already wearing one as a test and most time I don't even know it's there unless I touch it or have to use the restrooms. Someone here suggested this. It's a good idea. I never wore one outside the house. Unless it was Dr appointments or ER. I wore it to work... Of course I am just wearing it and I don't have a stoma yet so it's not a complete feeling of wearing a bag. But so far I am comfortable with it. And believe me I have had many times where it would be so much easier to empty the bag than go through some of this.
Edit again.
Thank you Scott.
I will ask the catheter question and others at my next appointment.
This is why I am waiting until the end of November.
BCIR and Kock pouch is out.
I asked she does not do them.
She said I could get a referral if I wanted but we talked about them at length and like all versions they have their problems.
She also said.... As it is hard to diagnose... I may have had chron's all along. There is a test for that but it involves swallowing a pill and recovery of it. I have a constricted inflamed area and it may get stuck there and require surgery to remove it if it does.
She is.... If and when I go in for removal... Look at the inflamed constricted area and if she feels that is the problem she will remove that and leave my pouch alone.
That... Would be the only hope I have once I go in..... She also said I most likely have irritable bowel syndrome. I do believe that.
I appreciate any input and will uestion the surgeon on all that are applicable in my situation.
As I said.... I would like to keep it. But I am also willing to wear an appliance also if it will put an end to this.
I read some people here trying to keep their pouch at all costs going through a heck of alot more than I am with infections... And such. I just don't know how they can endure such pain mentally and physically for longer than I have. I am not sure I want to spend another year like this.
I have a full time job but feel I can't do anything outside of work. And I stay at work my whole shift good and really bad days. I know I have at least another 10 years in the workforce and with this weight loss I don't have the stamina now to get through n eight hours shift. I force myself to stay on bad days when I know any normal person would leave early. I'm not normal.
Or I am... Just want a full paycheck.
