Ulcerative Colitis started for me when I was in my 20's - horrible pain - terrible diarrhea - large amounts of blood in my stools. What followed next was several years of extremely high doses of prednisone - many hospital admissions where I was put on IV antibiotics and prednisone. The prednisone made my face balloon and sent me into depths of depression. I lost my job and basically I lost my life. I was about 27 years old and I was on food stamps. I was a college graduate and I was unable to support myself because I never knew when a flare up would occur. It was horrible and very difficult for me to accept. I hated the prednisone more than anything. (I was allergic to azulphadine.)
When I was 30 I was married to a wonderful man who has stood by me through years and years of hell. I was able to get pregnant - going off my meds - which made all of my UC symptoms even worse. My first pregnancy ended in the 28th week when my baby died due to pre-eclampsia. Needless to say, that was a terrible time for us, but I was determined that I would have children, so we forged on and had two more successful pregnancies. Both of those pregnancies also involved premature babies due to pre-eclampsia (toxemia). To this day I believe that ulcerative colitis had something to do with the pre-eclampsia.
For the next ten years, my life continued to be a living hell with bowel incontinence and flare ups from UC. I did not want to have a bag and I was determined to hang in there, but it became almost impossible to live. In 1988 I went to St. Louis and had a J-pouch procedure done. At that time, it was supposed to be the best thing available for patients needing to have their colons removed. My colon was such a mess from years of ulcerative colitis that it basically did not work - whenever it became full of stool, it just emptied it - no matter where I was or what I ate. It was pure hell. The J-pouch surgery was rough and I was 40 years old at the time and also had a hysterectomy. I figured as long as they were in there they should get out whatever might cause me problems in the future.
Well, needless to say, the J-pouch ended the ulcerative colitis, but it did nothing to stop the bowel incontinence. It was especially bad at night and for the past 20 years, I dreaded going to sleep. It also seemed that things became worse for me during the last five years or so.
Last December I was talking with a friend of mine who told me about a friend of hers who had gone to Florida and had an operation that changed her life completely. I did my research and came up with the BCIR and wrote Susan Kay. She told me to have my medical records sent to her and then she sent me the information package telling all about the surgery. It also listed several people to call and in January I made my first call to a wonderful lady in Atlanta. She told me all about her experience and promised me that if I did this I would never regret it. To make a long story short - I HAD MY SURGERY IN APRIL OF THIS YEAR - and she was so right. My life is so improved that I can actually call it a life now. I walk out the door of my house and I know that until I put that catheter in, I do not have to worry about where bathrooms are. I do not have to wear protective padding and I can do things now that I have never been able to do before. My children are grown and I had always wanted to do something with my life when they left home. Recently I took a part-time job at a pre-school where I get to take care of darling 2 year olds in the afternoon three days a week. I just love it.
Here are some other things I have done since my surgery - normal things for the rest of the world, but for me, these are major events: I went to a public park for the 4th of July to watch fireworks - I went to an outside concert - I go to grocery stores and movies and never have to worry about finding a bathroom. In fact, when we go to movies, I never miss any part of the movie because of having to run to the bathroom. All of these regular everyday things normal people do, I was never able to do before. Now I can! It makes me so sad that I suffered for so long when I didn't need to. I always figured I had no choices in my life and I would just make the best of it the way it was. My world became smaller and smaller over the years, until it became just easier to stay home than to go out into the world. The BCIR and Dr. Rehnke gave me my life back. I am now 60 years old and I have not been able to live a normal life since my 20s. I am so thankful to Palms of Pasadena and Dr. Rehnke for giving me my life. No matter what happens down the road, I know I will never regret having this surgery. Currently, I am dealing with a case of pouchitis, but it is being controlled with antibiotics and probiotics and it seems to be improving. My surgery has only been 6 months, so I know things will only get better and better for me.
This past September my husband and I attended the Quality of Life conference in St. Pete and it was the most wonderful experience. Many of the people I talked with online were there and so was the first lady I called in Atlanta! It was great to meet her in person. Everyone there had been through the same experiences and it was so wonderful to share with them and learn from them.
If you are a person trapped in a life that is miserable because of illness, I promise if you have this surgery you will never regret it. I still cannot believe how freeing it is to walk out the door and never having to worry about where a bathroom is! It amazes me every day of my new life.