Ok, so I had my urostomy surgery 6 years ago. I have been very lucky; my husband has been very understanding and supportive. He realizes that the ostomy doesn't define me and that it is simply the only way that I can live; without it, I would be dead.
I started my ordeal in the fall of 1993, the year my youngest child was born. I was diagnosed with bladder cancer when I was 30 years old. It hits pretty hard to have a diagnosis of cancer at that age with three small children under the age of 6. The first thoughts that went through my mind were not being around to watch my babies grow up. Fortunately, the cancer was caught in very early stages, and the treatment at the time was for chemo and radiation. Three months of hell, but worth it looking back. Then in late 2001, recurrence. Two further completely useless sessions of chemo followed, and then in September of 2002, the surgery. Before my surgery, I measured the capacity of my bladder in minutes rather than quantity because everything that I did had to be measured by how far from a bathroom I would be. I actually welcomed the surgery, as my bladder capacity at that point was less than 30 minutes.
Just two days after my surgery, the appliance that had been put on me after the surgery started to leak, so it had to be changed. The nurses were quite amazed that I wanted to do the whole thing myself. What they didn't know, and I didn't tell them, was that doing it myself was selfish; with the incision site being quite tender, I didn't want someone else removing the flange for me; they cannot feel when it hurts. Anyway, they were so proud that I wanted to do it myself and was accepting the whole ostomy thing, and I didn't want to burst their bubble. LOL
Since the surgery, my health has not been perfect, but I am alive and loving life. I am watching my children grow and become independent adults. Only two left at home now, with the youngest set to graduate in three years. All three of my kids are the best things that ever happened to me, thanks to my husband.
Some of the health issues that I am now facing can be difficult. One of the most serious is that my kidneys do not function at the best levels, and when I get sick, their function goes way down, which alarms my docs. The other issue that I face is what I call an episode. What happens is that my intestines go into spasms, and the only way out is to be in the hospital, where they treat me with Buscopan and morphine. If the doctor on call listens and does what is needed, I am generally out in less than 12 hours. Once, I had a doctor who figured that he was smarter than me, and I had to spend an entire weekend at the hospital. Frustrating. The one other health issue that I face daily is the deterioration of the bones in my pelvis from the radiation therapy. It means that I cannot stand for extended periods and I cannot sit for extended periods. Coming out of the surgery, I even ended up with a cracked sacrum, which sucked and made life difficult for a while, but eventually healed. Having a good doctor and a fabulous boss helped me get through that one.
I think that one of the things that helped me to come to grips with the ostomy was a friend of mine at the time. When we started talking about it, she said to me that she had an ileostomy and had for years, which surprised me. But it made me realize very quickly that "nice people have ostomies." I am not sure what made me think that only nasty people had them, but that was the thought process at the time. What I learned from her was that ostomies don't define us; they simply are how we must live. She used to live across the street from me, and we called ourselves the Bag Ladies of Eccles Crescent.
I would love to hear from you. Keep in mind that I am not looking for a romantic relationship; my husband and I are very committed to each other and always will be.