HOME AFTER A MONTH AND 3 DAYS

Dear friends and family, After a month in the Burn/Wound ICU and 3 days on the regular floor, I'm home.  We are still struggling with the same problem, keeping a convatec wound manager on my fistular, the fistular is located right in the seam of the main channel where they sewed me up months ago.  The magnificient weight loss is not helping things in the seam at all.  HOME!  YAY! My surgeon, whom my wife absolutely detests, he has not a good bed side manner, but I trust his abilities, is out for at least 6 weeks having hip surgery and recovery, told my wife that he would operate on the fistular in April (YAY!)  It's hard to manage. I am NPO, absolutely nothing by mouth.  I can brush my teeth, use artificial saliva, mouthwash, and wash and spi****er, which is better than nothing.  It's not as hard as one might imagine.  I receiving Boost by a Jejunum tube in which we clogged with some slow time release happy pills today, but my beautiful and talented wife, whom I adore, worked and worked until she cleaned the tube out! The doctors want me back in the hospital now, can you believe that.  The only thing they can do that we can't is fill me with wonderful happy medicine.  Wow! I'm using Convatec Wound Manager bags size Medium, and a portable pump, with stomahesive which is ghastly, gets soggy when the bile gets on it and tears down the adhesive.  The hospital/doctors wanted 1 bag per 3 days, we are getting 1 bag - 10 hours maybe if I lay flat! Thank you all for your continued prayers, your gifts and wonderful encouraging emails and cards.  I believe I weigh about 255 now and the docs believe that will be down another 40 pounds before surgery.  They want my insides to heal up before they do another sugery, I hope April will be the surgical date, I don't know if we can survive longer. If anyone knows of any sort of bead blockage like stomahesive but one that can stand up to liquid bile, please let me know! I may not post often, but you are always in my thoughts and prayers, sincerely, BobM. P.S.  My daughters sure am glad to have a dad to hug on at home, ha.  Me too.

Preacher Bob.... Love to have you back, for any amount of time.... are you using the stomaheisive in the past, or the ones that look like modeling clay....kinda like chewing gum>>>> there is one that is dryer to the touch, it is shaped liek chewing gum...I can call the rep if you like... since liquid is coming out....in the past, we have used a cathater inserted to drain the majority of the liquid away from the site...and then the bag for protection... let me know if you need me to help you follow up...but ostomy nurses are generally pretty good... Are you useing the powder with the stomaheisive???I have used them in conjuction russ

Bob glad you made it home!     

Hi Bob.  i am very glad your home.  Youve been through a lot.  I know we had opur surgeries at the same time, and it seems like I had mine forever ago, so I cant imagine what you've been through, but I am hoping for you the best Kevin

I can't relate to your difficulties.  I had been in a burn unit and then a nursing home for the treatment of my Lymphedema.  And, fluid kept draing along my surgical scar for several months.  At first, a nurse changed the dressings but soon my wife was doing it in the morning and night.  But, my problems pale compared to your. Our wives are really great.  I know how much you appreciate what your wife is doing for you.  I feel the same way about my wife.  She doesn't like anything about nursing, but she's had to do many nursing and physical therapy duties for me. I hope you get well soon.  It's good to hear that someone on this forum knows exactly what you are talking about and may be able to help you.  Know that the rest of us will be praying for you.

Bro Bob! Praying and waiting for the day when you get through to the other side! Great to hear you are home with your Gals. Wives are amazing! Mine was a Wound re-dressing fiend! I had the same question as Russ… Using the powder with the stoma adhesive? That seemed to be very helpful for my dad. I went NPO for just over two months. On the brightside? When you do add food back into life It really is a whole new relationship with food. The Extreme-ness of the complication do a total Restart of habits. Like wiping your computer completely and installing new operating system. The difficulties that some have at 2 and 3 years Post-Op with old eating habits popping up? Not such an issue for those who "Stopped Everything" for months to get started on their "Journey." Enough of my optimistic-polly-anna-babble. This suks, but you can beat it to pieces! Hang in there, and keep following doc’s recommendations to the T! I look forward to a long string of success stories coming from you in the future! Snatching Victory from the mouth of disaster is terribly difficult, But the pay-off is marvelous! Best Wishes- Dx