ValZen wrote:That's good you can be comfortable at your office and your bathrooms have what you need on the days you need it! There's another reversal surgery group I've joined and it really puts things in perspective and makes me realize 1-2 weeks - even 1-2 months is pretty early in recovery. (My surgery date was July 26th - I wrote June in my earlier post.) A guy on the site wrote today (he just had reversal surgery 3 weeks ago) that when he farts, he "poops a little"...when he has to poop and is on his way to the bathroom...he poops a little. That made me laugh and it was surprising to see the other 40-50 people who responded to his comment basically saying "me too!" So, I'm really encouraged by the times I have full control and try not to be too discouraged if there's a "blip" like the guy mentioned... It's easier some days than others, but I do believe from all the posts I've read from people further out, over time it does get better and better.
I hope your CEA test result is in the normal range for you now and it's a good appointment overall tomorrow!
I also hope that either you or one of your sisters can be a donor for your sister! It blows me away what can be done treatment-wise now. You can't get much better than a trial that's 100% successful - wow!
Could you send me a link to the Reversal Forum? I wouldn't mind seeing what a lot of other people are doing in real time.
I was in the bathrooms for the past 2 1/2 hours pooping, cleaning, pooping, cleaning, pooping, cleaning. Sometimes the cleaning was in the shower. What's frustrating is you wash yourself off, dry yourself, and then you need to go again. I bought three packages of moist towels and they are almost gone. Those things are helpful and I plan to buy ten packages tomorrow after seeing the oncologist. It's critical to maintain your supplies. This feels like a war.
If we can get a sibling donor, then the process is a lot easier. With a sibling donor and good HLA matches, they won't need the immunosupressants (I believe) which will compromise her immune system. I asked my son and he said that siblings are the best as they have theoretically half from each parent, same as the recipient. As you get farther away, you get exponentially more differences. My son said that it's possible to turn normal cells into stem cells and the ideal cells would come from the patient but that's obviously not an option or there wouldn't have been the trial for stem cells from those not even a close match.
The technology is amazing. I do think that the person that gets the treatment may have different identifying DNA. Their blood might show the donor DNA while other parts of their body would show their own. I've seen this sort of thing on CSI before.
Stools are getting harder and one problem I have is that the skin around the anus is getting red or bloody. I was considering putting some petroleum jelly around the opening and inside (I have a ton of neoprene gloves for when I was on Oxaliplatin in freezing weather). I seriously hope that everything or 98% is out of me now so that I can just get up, shower, and go to the oncologist appointment. I think that I'm not going into the office.
Going in to see the surgeon will be even a bigger challenge - my plan is not to eat for 18 hours before the appointment. I have about 27 pounds that I could lose and not care about it. At that point, my waist is around 31 inches. The poop issues are such a big issue that I think very little about the wound these days. It is improving too, though.