Please Read

The following blog posts are based solely on my personal experiences. I am not a Doctor, Nutrition specialist, Comedian, or Professional Baseball Player. If you have a health, nutrition, humor, or baseball issue please seek a PROFESSIONAL.

Favorite Bathrooms

  • Home Sweet Home
  • When I'm @ someones house: the one farthest away from the crowd
  • @ the Mall: Macy's (as public bathrooms go this one is very nice)
  • If I can't make it to Macy's...JC Penney's will have to do (they recently remodeled so it is better than it was. I don't know why they didn't ask for my input???)
  • Monterey Bay Fish Grotto in Monroeville has a great bathroom
  • Ponte Vedra Inn and Club, My fav place to vacation, their rooms have the most wonderful bathrooms

Helpful links

  • FREE Crohns Disease Support Network
  • Find a Toilet
  • Medical Alert Restroom Access Pass

Wednesday, January 13, 2010

The young adult years….

We all know how stress = flare up. At the age of 22 while planning my wedding I started having flare ups every couple months. During my first year of marriage there were no more breaks. I was in constant flare mode. My pc doctor at the time was useless. He just kept giving me antibiotics telling me it was probably colitis but would not run any tests. Now at first I was in no hurry to be tortured with the long list of diagnostic tests but after a few months I was begging for them and some help. Still he did nothing so I called a new Dr. in tears begging for an appointment asap. He agreed to see me the next day and immediately scheduled all the necessary tests and brought in a GI doc to consult. Diagnosis – crohns disease. I continued to see the GI doc who prescribed prednisone and sulfasalazine. Aside from the side effects the prednisone was wonderful. It took all my pain away, but once I started it I could not get off of it. Then 2 months later on December 30th I started having severe abdominal pain. My husband had to rush me to the hospital. I kept telling them that I had crohns disease but they kept looking for other causes. I had a fever and was vomiting. I was in so much pain I couldn’t stand to have anyone even touch my abdomen lightly. Eventually they basically put me in a room to let me die, and I almost did. The nurses never came back to check on me. If my husband hadn’t stayed with me that night I probably would have died. All I wanted to do was sleep but he kept waking me up to see if I was ok. He kept asking me why I was breathing so strangely and I kept saying just let me sleep. I have no memory of the following but according to my husband he pushed the button for the nurse but no one came. He went to go find a nurse and told them I was having trouble breathing. When they checked my vitals I had no blood pressure and my heart rate was 200. They rushed me to ICU and called my GI doctor in. I was in and out. Each time I woke up they had more tubes in me. At this point they were not giving me anything for the pain. They didn’t want to mask anything but I was completely out of it and I didn’t have a clue how bad things were. They would only let my husband and family come in for a few minutes at a time. I remember wondering ‘why does everyone look so sad’??? I’m glad I didn’t know. By this time it was Dec. 31st, New Years Eve. My GI doctor brought in a surgeon. The nurses told my husband to go and have some dinner and get some rest, they would call if anything changed. He no sooner walked through his Moms front door and the phone rang. They were rushing me to another hospital for surgery. When my husband got there the surgeon told him that he was concerned that my intestines had perforated. He had no idea what he would find when he opened me up and wasn’t sure if I would make it through the surgery. He was right. My intestines had perforated and my appendix had burst. My abdominal cavity was full of bile and poison that was causing damage to the rest of my intestines and my other organs. He had to remove 8 feet of my intestine (most of the large intestine), my appendix, and my right ovary and fallopian tube. Only about 6 inches of my intestine had damage from the crohns disease. The rest was damaged by the bile and poison they were soaking in for so many hours. I woke up in the surgical ICU and my husband wished me a Happy New Year. I was in the hospital for two weeks, then in and out of the hospital for the next four months with complications. During that time I developed a fistula, a very large abdominal abscess, pancreatitis, and a liver infection that years later turned out to be Hep C form the blood transfusions they gave me. Once I got over all the complications and gained some weight back (I had dropped down to below 70 lbs. Once I hit 70 I wouldn’t let them weigh me anymore. It was too depressing) it was clear that the resection was successful. I was able to get off the prednisone. No more pain and able to eat all the foods that use to bother me. I still had diarrhea and the fistula to deal with. (I spent years on Flagal and Cipro.) He deduced that the diarrhea was due to the amount of intestine that was removed (short gut syndrome???). I accepted this and muddled through. About a year later we decided to try to have a baby. My doctors assured me that it would not be a problem with only one ovary and fallopian tube. After a year of trying with no success I started a new kind of diagnostic testing. Everything seemed fine so my doctor decided to do exploratory surgery. I had so much scar tissue and adhesions that he was not able to use the laparoscope so he opened me up and removed as much as he could. Now he was sure I would be able to get pregnant. Four months later I went to see him and he looked at me and said “I can’t believe it, you are pregnant”. Apparently they didn’t think I would ever get pregnant but didn’t want to discourage me. Not only did I get pregnant but during those 9 months I was healthier then I had ever been and delivered (by C-section) a healthy 8lb 8oz baby boy. A true miracle to us. One year and six months later I was pregnant again. Another very healthy pregnancy except for the last couple of months. I was very uncomfortable anytime the baby would move. I delivered (by C-section again) a healthy 10lb 10oz baby boy. No that’s not a typo. He was 10lbs 10ozs (oh I guess I should mention that I am only 5’ (ok 4’ 11”) No wonder it hurt when he tried to move around. That and my doctor also discovered that I was full of adhesions again so after he got my baby out he removed as much as he could.

To be cont.
Love, laugh, and always know where the nearest bathroom is…..

No comments: