Living with Crohn's: A Journey Through Pain and Ostomy Challenges

Hello fellow ostomates and people that are on this site only because they are jealous and angry at the world because they can't have an ostomy. Anyway, I have Crohn's and I don't know that I would trade it for a wheelchair, blindness, being in a padded cell with a straitjacket on, nor any other anatomical or mental abnormality that plagues the human body. I will stay clear of any more mention of any mental disorder as I probably would be accepted should I apply at the nearest facility. Getting back to the subject of $#^* bags, etc., anybody that has been on the floor nauseous and in excruciating pain, raise your hand. Well, I started 37 years ago when my 75-year-old family Dr. cauterized a rectal fistula, and I mean he made sure that thing wasn't coming back, not anywhere within one inch of the area in question. I often think back and realize that I had no clue as to what that fistula was just the beginning of. For the younger folks that missed the fun, they did not always have endoscopy. Ever heard of a proctoscope? (cringe) It is like an Eveready flashlight and they stick it where the sun doesn't shine and look through it, the same as endoscopy, just a little more primitive. And much more painful! About a year later, I was in my second exploratory surgery to try and find out why I was bleeding down the back of my legs after going to the toilet. Came close to checking out several times, but I still had no idea of the good stuff, yet to come. Christmas night, 1975, my first wife and I traveled from Macon to Moultrie to visit my parents. That night, more bleeding. Rush to the hospital, getting pretty good at knowing when it's time to head for the hospital. The interns in the ER, just out of Emory in Atlanta, told my folks they may not be able to keep me; I had lost so much blood. So, more surgery. They removed a segment of my colon and a small section of the small intestine. I could not get well, so more surgery and a colostomy. WOW! I believe it was somewhere around then I realized this was not going to be fun and I hated that thing (colostomy) for 25 years. I remarried, had a son, and did pretty good with only a few hospital stays through the years. In 1998, I started having a lot of pain and stayed sick as mud for three years. Jan. 2001, I had my colon and rectum removed. That is where the current nightmare started. The hospital air suction stopped working on the fifth post-op night, I got sepsis from that. ICU, hallucinated my butt off for four days, flatlined, was resuscitated. I was GONE for about 8 minutes, but came back from a perfectly beautiful place. But the really BAD PART, they put stents in my kidneys for the surgery, it destroyed my urinary tract, went through Peyronie's Disease, was impotent for many years, and even worse, they damaged my pudendal nerves cutting my rectum out. I can only recently, after nearly eight years, SIT down and finally the UNGODLY pain has eased off about 70%. Of course, I am strung out on enough narcotics to kill most small groups of people. Have to FIGHT dehydration, malnutrition, anemia, no teeth from years and years of prednisone. You all know the drill, I suppose. It just makes me mad as HELL to go in a hospital with absolutely nothing wrong with my ability to pee or have wonderful sex and be killed and cut up like hamburger meat and kicked out on the curb and left for "In Great Health." Just ask my M.D. He said so. Lazymule

Wow! Your story certainly qualifies for probably the worst one I've heard, and I agree you went through hell, but you're still alive now to tell others about it.

Granted, your attitude needs serious adjusting towards positive thinking, but I'm sure there's some hope for you yet.

I wish you well in your recovery and search for someone who can help you and make you happy.