Jo, I do understand
From: K Nygren (ifirgit@yahoo.com)
Sun Jan 5 07:59:07 2003
Jo,
I do understand the having to catherize yourself. I understand the dehumanizing feelings that you must have, but know that it is absolutely necessary to prevent yourself from going down another path of problems....the kidney. While self-catherization is in no way pleasant, I know that you will accept your need to perform it with as much grace and determination as you can muster. Do not let frustration and anger get in your way. I know you are aware of the potential issues that await you should they choose to surgically intervene in matters of the bladder. The humiliation and disgust magnifies one hundred fold and never, ever goes away. I trust in you Jo, you understand how I live, but there are others who may need to hear this. As adhesion sufferers, we need to avoid surgery at all costs, unless it is an emergency. But, in addition to this, we should not be allowing doctors to cut on various organs of our body....particularly the bladder. If you are having bladder problems, it is most likely caused by adhesions. Especially if they cannot really determine a cause, but also often in the case of diagnosis' such as interstitial cystitis. I am not saying that people with that diagnosis do not have it, I just know that I was told that I had that problem, but testing never substantiated anything. If you are told you need surgery (and this should be done all the time, not just in reference to bladder surgery) ask if you can live without the procedure. Ask how having the surgery is going to improve your life....is the surgery going to "cure" you? And definitely get a second opinion and maybe even a third. Remember though, for some reason, many doctors do not acknowledge bladder adhesions or the fact that they cause the multitude of problems that they do.
Alright, now that I have gone off on that tangent, there is something else that I wanted to let you know about, Jo. I don't think that you and I have discussed much about our bowel problems, so I wanted to let you know where I have gone in those regards and where I stand now.
When I first starting having all of my surgeries back in 1991, one of the first surgeries was a bowel resection because of an obstruction. In my entire life, up until that point, I was always pretty regular but perhaps a bit constipated. Following this surgery I lost 60-75 pounds within the first month. I had diarrhea 30-50 times a day....boy was my butt sore! The weight loss was nice, but it obviously left me very sick. My doctor had me undergo a colonoscopy...or one of those tests...which showed absolutely nothing. But, the facility where they do the testing has some kind of special toilets that save stool specimen from each of their patients. (This is something that I did not notice, had never heard of, nor have I heard or seen anything since....the nurse just explained it to me when I asked her how they made their diagnosis) A few days after having the test and having been told that everything was normal, the nurse called and told me that I had to be set up for six weeks or more of very strong IV antibiotics because I had c-difficile. Mind you, this was back in 1992. I went through with getting all of the treatments, but continued having very erratic bowel patterns. For two weeks I would have very loose bowel movements and then I would be constipated. I was told to avoid fiber. About four years ago, the loose stools disipated, but I still was not having stool like I had prior to the surgery. Since then I have suffered with a lot of constipation.......a lot! But, that I attribute to my use of narcotics. It was not until this past year, 2002, that my stools began to take on the same appearances that they had prior to my surgery in 1992. That is 10 years! I had given up hope of ever going back to normal. Yes, I still have constipation. I have real issues with being able to move the stool out of my rectum, but that is an issue that I had prior to any of my "adhesion" related surgeries that began in 91. I do realize now that my lack of muscle in
the rectum area is most likely adhesion related.....my initial surgery of the abdomen was performed in 1979. But, I just wanted you to know that this most likely will take a long time. You may never go back to "normal". But don't give up hope either. This is one area that has actually improved for me. A bright spot in an otherwise dreary picture.
Love,
Karla
**Soaring with my angel**
http://www.geocities.com/karlasfamily2001
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