One year ago I took the bus to Førde sjukehus to get an operation. An operation that my specialist doctor had been talking to me several times. I had tried REMICADE (I liked that, but my doctor did not see enough progress), my doctor wanted me to try HUMIRA (I hated that one). Humira made my life miserable, dreading every time I was to use the needle. And so I was gently pressured to the operation, ostomy (ileostomy).
One year later and I have adjusted. But I am not going to say, adjusted just fine. I still feel lied to, sometimes, and I think that they should not have been so optimistic about the whole process. It is a big process to get adjusted to. They talked me into believing my life would be just so much easier, but I did not realize that was because they thought my life had been so tough with my disease all those 20 years. They were wrong, I had many more good time than the few hard times. Sure I was admitted to hospital a couple of times. It was worst the first times when I was under 20, in my late teen-age years. But I adjusted just fine. My disease was inconvenient but seldom more than that in my view. My mother remembers it differently, my doctors too.
What the medical staff did not see, that ostomy operation replaced the diarrhea with the occurrence pouch incidents.
Ileostomy
A surgically created opening in the small intestine, usually at the end of the ileum. The intestine is brought through the abdominal wall to form a stoma. Ileostomies may be temporary or permanent, and may involve removal of all or part of the entire colon.
So I have a stoma instead of rectum. They call it amputated rectum. It sounded weird to me, it still does. Obviously one need to have something to storage the "sewage". Unlike the rectum the stoma cannot be controlled by the person. No muscle to contract or open. So that means that the ostomy took from me some of my control. And not only that, the pouch system is not perfect so embarrassing accidents can still happen.
I am also lucky. My many years of embarrassing diarrhea accident makes me take the accidents with my new system much better that unexperienced people. The fact that my ostomy operation is permanent gives me no other choice than to accept it. That may sound bad but science has it that people with temporary ostomy have more difficulty with adjusting. I am also lucky that my brain is still an optimist that forgets bad time to remember good times.
I have a good system now, with fewer accidents. I hope I do not have to have another operation again on my abdomen. It was hard. It is still not all OK. A year later my sleep is better but it is interrupted because I have to empty my pouch. So the medical people thought my life would be better without diarrhea, yes, but they forgot to tell my that I would have to empty my pouch even in the middle of night. The staff at the hospital was nice but I feel lied to, yet. But I much rather would like to think about happy things like OPERA than unhappy things like what the Operation cost me.
Lucky to be living in Norway. I feel taken care of. I still work 50 percent but I still believe/dream of 100 percent work.
Operation: February 16, 2009
In very much pain after the surgery. The morfine did not work for me. It helped like 5 minutes. But when I was able to have it as pills, it worked. I was not supposed to be in such great pain. But the anesthesia that were supposed to go only to my abdomen had gone to my legs. It meant more pain when I woke up and a longer time in the hospital because my legs needed to be up and go to.
Leaving the hospital: February 28, 2009
Taxi home. My mother is with me.
Going to my parent's for the reconvalecense: February 29, 2009:
Flight with my mother holding me up.
My plans for seeing José Cura as both Don José and Cavaradossi in Vienna in March 4+5 was gone already. I knew it was the right decision because I am so weak. I cannot walk far and long. My nights are not good.
March 26 to the hospital for a check up.
April 3-5: Finally back in the saddle as the Crohnic Opera Traveller named OperaDuets. Jenufa with Agnes Baltsa as Küsterin. Wonderful!!
April 20: Doctor's appointment
April 21: Finally I am well enough to go to work 50 percent.
April 25: I get my Tosca with José Cura and Maria Guleghina. I can do without Carmen with Kasarova and Cura, I read the reviews while at hospital.
My life seem to be on track. Slowly pain killers is gone, only paracetamol remain. Later still my sleeping pills, good-bye in December. My sleep patterns is better.
I thank HOLLISTER and their pouch system. It helped me. For me, a this point, their Conform 2 Two-Piece System, Drainable Pouches is the best. My skin likes them much better than the other ones, and I feel more secure. Finally, secure. Skin-friendly. But naturally I still have Crohn's disease. But I can still travel and see opera.
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