LIFE WITH CROHN'S
     Crohn's Disease is a very misunderstood disease.  People who don't have it will never understand the pain and the embarrassment that people who do have it experience.  I am in a period of remission right now, if there really is such a thing, but I can still clearly recall everything I had endure growing up with this illness.   School was my biggest problem.  I would get awful pains in my stomach while in class, and I would think, "Please, God, make this go away."  Sometimes I was lucky and they would go away.  Other times I was not so lucky, and would have to practically run for the bathroom.
       I didn't know what was wrong with me until I turned 16.  By that time, I had been sick for many years.  My mother, apparently tired of my complaints, called a gastroenterologist and set up an appointment for me.  The doctor immediately knew that I had Crohn's.  It was a relief to know that, after all this time, it wasn't all in my head!
     I was given many different medications for about a year.  Nothing gave me any relief.  I was getting stomach aches that were so bad, I hardly ever left the house.  Suppertime was the worst.  After supper, I would just lay in bed crying, in between runs to the bathroom.  I was almost constantly in the bathroom, so I was embarrassed if we had company.
     After graduation in 1988, I had a resection.  I was in the hospital for 11 days.  The nurses kept telling me that I would be in a lot of pain from the surgery.  They would come in to ask if I needed any pain medication, but I said I didn't.  I was so used to the constant pain, that the pain from the surgery felt like nothing.
     When I got home from the hospital, I figured I was cured, and wouldn't have to ever deal with that again.  But soon I was getting awful diarrhea again.  It was even worse than it was before the resection!  I couldn't understand it.  I was constantly in the bathroom.  I called the doctor to ask what went wrong.  He told me that this happens sometimes, and all I have to do is take some medication.  At first, I dreaded the thought of medication; it hadn't worked before, why would it work now?  But this medication was different, it was a powder to mix into my drink.  All I had to do was take it in the morning.  So I tried it, and sure enough, it did the trick.
     That was seven years ago.  I'm still taking the powder, and I had a slight flare up recently, so I'm also taking medication.  Only four pills a day.  The surgeon had told me that the Crohn's was localized, so I probably would not need another operation for many years to come.  Amen to that!

MY LIFE WITH CROHN'S
     Twenty years ago, on February 11, 1976 I had an ileostomy. I had been sick with Crohn's Disease for several years, and at the age of 24, there seemed to be no other solution. I was very much afraid of surgery making my life horrible. I was sure that an ileostomy would make me unlovable to friends, family and future relationships. Would I even be able to love myself? I went kicking and screaming into surgery, trying to opt out at the very last minute before going under.
     When I finally surfaced from the anesthetic the way that I felt surprises me even today. I felt happy and enthusiastic, like I could do anything in the world that I wanted to do. I don't mean that I talked myself into this - I actually felt it coursing through me at the first moments of consciousness. I don't know what happened under the knife, but deep down inside I knew I had a second chance. I hit the ground running.
     Less than two months after my operation I was headed back out to the Rockies where I had been living before I had run home to Michigan with my Crohn's disease flaring up. I spent the three years after my surgery in Montana, camping, hiking, backpacking, swimming, biking, fishing, being a student, working, dating - you name it.
     In the twenty years since my operation I have received my BA degree in fine arts, began working as a graphic designer, met and married a wonderful man and recently gave birth to a gorgeous daughter.
     Eight years after my ileostomy surgery I had a recurrence of Crohn's and had a resection. I had the same upsurge of energy after that surgery too and that's when I went back to school and, at the age of 35, finally graduated!  The Crohn's hasn't surfaced in the past 12 years.
     I feel that my illness and surgeries have taught me a number of things. I value my life and put energy into taking care of myself with diet, alternative healing systems and especially attitude. Meditation, which I started twenty years ago, right after my first surgery, has been my main support in these areas. I took prednisone for a short time early on but haven't taken that or other drugs in these 20 years.
     My ileostomy has had it's own set of lessons to teach. My feelings about my body were good in my early years. I was a tomboy and loved the freedom of using my body in wild, athletic ways. When I hit adolescence, so much changed and I became self-conscious. I would look to others good opinions of me to help me feel good about myself and would cringe under any imagined scrutiny.
     When, at the age of 24, I had such radical disfiguring of my body, I had to begin to think of myself as whole, regardless of what the mirror told me. It became important for me to learn to love myself for who I was, which included my body, but also my mind, my character, my whole being.
     I had a number of romances after my surgery and before meeting my husband. One of those relationships was for four years. Maybe because of the respect that I was learning to have for myself, I also received respect in my relationships. My husband even goes so far as to say he loves that I have it because if I didn't he might not have me; I might not be around to be his wife! The fear of rejection that I'd had before my surgery has never happened - from friends, family or lovers.
     Of course, there have been times when I wished I didn't have my ostomy, but I honestly can't remember the last time I thought that. I don't want to pretend to be Mary Poppins with a bag - I have my tough moments too. Frustration hits when I sometimes have trouble with my appliances, or when I'd like to wear a certain style of clothing. But when I put it in context, my ileostomy did give me back my health, and with its help I hope to continue to live my life well.

MY LIFE WITH CROHN'S
     Hi my name is  Terry. I have had Crohn's for 24 years. I was diagnosed when I was 21. In 1974 I had a complete procto colectomy with a permanent Ileostomy. In my case it was a matter of life or death. My large intestine was so bad when they took it out they said I was lucky it hadn't perforated already.
     Since then I have had 18 major surgeries and numerous minor ones. I decided right off the bat that since this was a disease that I would have to live with the rest of my life, I had better just learn to live with it and get on with life. I feel that I have not  had that much trouble in that area.
     I know this sounds to good to be true . But I have been very lucky. I just celebrated my 20 th anniversary at the lumber yard I work for. I have had Insurance all this time and always had a job waiting for me when I was ready to go back to work.
     I never let this slow me down I was a scuba diver, policeman, cross country truck driver. I love to fish and ride wave boats. I live life one day at a time. I deal with the bad times as they come. I don't sit back and think about having bad days.
     I have found that my best weapon is my belief in God and my sense of humor. Even on my worst days I still find something to laugh about. Even when I go to the hospital to have surgery I make a game of it. When the nurses ask if I have ever had surgery before I give then a list I have pre-printed because they don't have enough room on their sheet. I don't think about the pain because that is a given (there will be pain). I think about the drugs I will get to relieve the pain. I do not take any form of narcotics outside the hospital, but morphine is a good way to go on a trip and never leave your room.
      I could go on and on. After 24 years I have all kinds of stories. But just remember you can have a decent life with Crohn's and UC. Sometimes it may be difficult, but after 24 years  I have even forgotten some of the things I have been through. Remember to have a good life you have to MAKE it happen. Take control of your life and MAKE it what you want. 

ULCERATIVE COLITIS -  FROM A YOUNGER POINT OF VIEW

Hi, I'm 15 years old and I was diagnosed with ulcerative colitis in August of 1995, so I'm relatively new to this.  But in the short time I've been living with it, I believe that I have found ways to cope with it, and have been doing it well.  Also, although it has changed my life in some not so good ways, I have also learned a lot and even made many friends from having it.  I learned that you really have to be open about your disease, and talk about it, even to people without IBD.  I know that people with IBD are not always available to talk to, and many don't like to talk about it with anyone.  But I have a friend who seems to have chronic depression and a bad illness (she hasn't told me).  She doesn't talk about it with anyone.  She is always depressed, crying at school, her grades are lower (she used to get straight A+'s) and she has just changed a lot.  I think it's mostly because she keeps everything inside of her and doesn't talk to anyone about what's going on with her.  I can tell my best friend anything, and I believe that has made getting through this a lot easier.  Also, I have made many good friends because of my colitis.  I have 5 pen-pals through CCFA, and all of you guys in the chats!  I also think it's good to get involved with the CCFA's activities.  I have gone to a lecture and I raised $496 for the CCFA Pacesetter Walk, and that made me feel really good.  Of course, there are the bad things about IBD: trouble finding food you can eat, flare-ups, making it to the bathroom ontime, etc., but handling well makes it all more tolerable.  It's also important to keep a good sense of humor, especially about the GI tract!  Believe it or not, it is possible to laugh about these annoying diseases.  There's a Far Side comic: "It's a Mad, Mad, Mad, Mad, Intestinal Tract", with intestinal bacteria going to a movie theater.  One night when I couldn't sleep, I drew a picture of a GI JOE doll with the GI tract going through him.  Ha ha.

      IBD is not going to stop me from doing anything in the future.  I want to go to Columbia University, become an urbanologist, illustrate children's books, live in New York City, or in Cleveland, which is where I live now, and have a family.  And I'm not going to be sick all of the time either: I believe that one day, there will be a cure.  Well,  I hope this article has inspired some of you who think maybe IBD is ruining your life.  I hope everyone is staying well. And remember: have a sense of humor, and enjoy life!

CROHN'S AND DIDN'T KNOW IT
     Crohn's Disease?  Before February of this year, I had never heard that term.  Hi....my name is Cara and here is my story......
     I've always had stomach problems.  The first time I went to the hospital in so much pain, I couldn't walk, I was 17.  They couldn't find anything wrong, so they shot me up full of Demerol and sent me home.  The next day, I was fine.  About a month later, I had a barium enema test done.  Nothing was seen, and again, I was pronounced healthy.  Most of the time, I did feel good.  Once every year or every other year, I would get stomach pains so bad, I couldn't do anything for a day.  Then it would pass and I would forget about it.
     It wasn't until September of 1995, that I realized that there was something was seriously wrong.  The pains were increasing in frequency and intensity.  Now when they hit, I would be out of commission for 2-3 days.  Sometimes when I ate, I would either vomit or I would look like I was five months pregnant shortly after eating.  I was living in Luxembourg at the time, and wasn't too confident about the doctor's there, but finally caved in and saw one.  He told me I had bad gas, and sent me on my way with six prescriptions---none of which helped.  Knowing that I was transferring back to the States in December, I decided to just wait to see another doctor until I was back home.
     When I arrived in Tampa, I went to see a doctor in Internal Medicine.  Much to my surprise, he didn't even lay a finger on me.  He ordered stool samples and blood work done, and put me on a high fiber supplement (which I later found out could have killed me).  I tried that for a couple of days, but it seemed to make things worse, so I quit taking it.  It was a couple of weeks later when I was in Ft Lauderdale, that I just couldn't stand the pain anymore, that I went to see a gastroenterologist.  Thumbing through the yellow pages wasn't the best way to pick a doctor, but I was desperate.  But, I lucked out.  Dr. Gluck gave me a thorough examination and immediately sent me to the radiology lab for an upper GI.  They took some initial x-rays, and called my doctor to do a barium enema first.  They did that test and found nothing.  They then proceeded to do the Upper GI--which I was told would take up to 4 hours.  I knew I was in trouble when they asked me to come back the next morning for follow up x-rays.  Dr. Gluck's partner called me that Friday; right before I had to catch a plane.  Unfortunately, his "beside manner" was lacking....he scared me to death.  His comments included things like "we are surprised you are not 1/2 dead."  Imagine my reaction!  I was in tears...went upstairs to say good-bye before I left for the day.. and they were throwing me a surprise birthday party.  Couldn't have been worse timing!
     It was in my follow up appointment with Dr. Gluck that I was told more about Crohn's.  The diseased portion of my small intestine was down to less than 5cm--thereby not allowing food to pass  through very easily.  He told me that I should get operated on as soon as possible and that the procedure I would be going through was called a re-section.  They would take out the diseased part of the small intestine (in my case, about 8cm worth) and re-attach the two good ends.
     I immediately began to search for all information about Crohn's and doctors/surgeon's in the Tampa area. I also found the support group on AOL, which helped more than anything else I had found.  I'm sure they thought I was a raving lunatic the first time I was in the room, but I was so scared!  This group, I found, knew more than the doctor's did!!  I initiated a series of second  and third opinions---and yes, saw a couple more "quacks" in the process.  I finally ended up with a great surgeon/doctor at the University of Tampa.  My re-section was scheduled for 3/27.  Funny that I started feeling better after that date was set....almost canceled it!!  But, I realized there was no other way.  The operation was a total success!  Today, I can eat anything I like and have normal bowel movements.  What a great feeling!
     As you can see, this all happened very quickly for me...from diagnosis to surgery in less than 6 weeks.  A few of the valuable lessons I have learned:  1)  first and foremost, if you're not totally comfortable with your doctor, find another one!!!!  There are a lot of "quacks" out there!  2)  be cautious about any diets the doctor's put you on....I had three different versions (all conflicting).  Your body is the best judge of what you can/cannot eat.  3)  take advantage of the support/knowledge of support groups like the one on AOL or CCFA!  You are not alone in this....they literally "saved" me from total despair! 

TWO CASES OF CROHN'S - Old and New
     I have been ill on and off since my teenage years, but have always been saddled with reasons from a list of what I am sure are familiar "diagnoses" for all of us sufferers:  "nothing";  "in my head something";   "giardia";  "borderline hypoglycemia and hyper as well";  "poor eating";  something like "post prendial syndrome".  This went on forever, all the while I was having to be brought home from camp cause I couldn't eat, and leaving school soon after I got there cause I couldn't get to the bathrooms soon enough. I felt stupid, and lazy-I figured I must just be trying to get out of stuff.  Then I got into my early twenties and the trouble really began in earnest.
    Right before the diagnosis of Crohn's I was in bed for two weeks in the heat of California with blankets piled to the ceiling.  I was freezing, I couldn't work, or eat or drink.  Everything I ate or drank came back up ten seconds later.  The day my roommates found me crawling down the hallway they took me to the emergency room where I was given suppositories of that compazine stuff.  It didn't work. I was told I had the flu.  The next night my roomies took me back, and before they even asked I was given a shot of compazine which promptly made me sicker.  I was diagnosed that night with a sexual disease.  I was soooo embarrassed-especially since I was not active at that time, and
hadn't been since my first marriage.
     Two nights later, ER again-- same good luck except they lifted the sexual disease diagnosis, and admitted they didn't know.  A week or so later I went to a doctor and
he made me ride across the PARKING LOT from his office to the hospital in an AMBULANCE.  I was there a week, and made the mistake of telling him I had manic-depression.  Right after that he strapped me down saying that if I was going to persist in saying I was so dizzy, he was going to have to strap me down for my own, and the
hospital's safety.  He was a MAJOR jerk.  After a week I was transferred to San Francisco hospital, and the diagnosis was made before the second day was up.
      Today I am doing well, and I am pleased to have found a group of folks to talk to.