I figure this is the only place I can complain about this. Am I the only who perhaps expected more out of having my colon removed? Let me give a little background: my first doctor wanted me to have my colon removed and sent me to a surgeon, which was a long drive away, without telling me he was sending me to a surgeon. My family and I were led to believe I was getting a second opinion until this doctor started describing the surgery and we asked why. I refused to have it done at that time, which led my doctor to drop me and I received no treatment for about four months. I had a stroke as a result. I really don't regret this, as I don't think a doctor should tell a patient what to do and we had not tried all medications yet. I was particularly interested in Humira, which ultimately worked for about two years, until it didn't. I had no choice but to have surgery when I ultimately did, which resulted in another trip to the same surgeon, only to learn my insurance would not cover this visit even though I expressly asked before making the long journey. Luckily, I was able to give surgery closer to home. I recall being told about some of the issues I would have without a colon, such as needing to wear some kind of pad at night, sexual problems, and soft formed stools. As I told the doctor when he explained these to me, I was past the point where it was a decision on my part. First of all, having an ostomy was more unpleasant than I could have ever imagined. Part of me felt vindicated that I put it off so long, but still I was miserable for five months. I had to change it far more frequently than I was told. It hurt constantly. The skin around it was like raw hamburger meat. At one point I slept without it one night based on the idea that my skin there could heal, and instead I had a wet, miserable night and the skin did not heal. I had almost constant leaks. The nurses that the home health service kept wanting to send me didn't know jack. The friend of a friend who has an ostomy told me not to eat or drink hours before I need to change the bag so I would not have any coming out while I was doing it, and the nurses did not know this was necessary.
I finally got the reattachment surgery and although it is far better than an ostomy, it still has its bad sides. I like to say it is slightly less unpleasant than having a colon. The thing that really gets to me, and I suspect that it partly has to do with the fact that I have always had loose stools, is the little bits that remain on skin that I have to use baby wipes and Q-tips to clean. It takes me forever to clean after a bowel movement, and I feel bad when I tie a public restroom up, but the amount of misery that those little bits of stool can cause is unbelievable. Sometimes, especially in winter, my hands end up chapped because I have to wash them so frequently as part of my clean up. First I get individual bits I have cleaned off my body on my hands, then I have to wash those off so that I don't risk getting them back on me as I clean further. I think this whole process is what gets to me. No one warned me about this, nor that since the stool still contains your stomach acids, it would burn like hell. While I am not sure I would have wanted to know this in advance, no one volunteered the information.
Then there was wearing a pad. I had seemingly endless yeast infections for at least a year until I came here for help. While I ultimately didn't follow some of the suggestions (since they didn't work for me), one person asked how frequently I actually need a pad. When I realized it was only about every two months, I quit wearing it and some of my misery was gone.
As far as my menstrual cycle, now that I don't have a colon my skin on my butt cheeks bleeds during my surgery. My doctor says it is just hormonal and it is nothing to worry about, but it sure doesn't feel good.
Lastly, there is my ostomy scar, or more specifically where the adhesive portion attached to the skin. I must have some sort of nerve damage there, and I need to wear loose fitting dresses sometimes because having the waistband of pants or a skirt touch it just hurts too much at times.
I know that this has been long, but I also know that this is the only crowd that will truly understand. Does anyone else have similar feelings?