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since May 2004

My story begins in my late teens. I was a normal new grad, starting the journey to a career that I had chosen. I was putting myself through nursing school, and working full time. Life seemed stressful, but no worse than the rest of my life had been. I was always on the large side and often teased about my size. I started loosing weight, and bathroom trips increased, but life was good. I was loosing that weight I had fought most of my life to loose. The bathroom trips increased and the pain started. I spent many hours in the bathroom. I had even set up a table for studying while in there. I started to miss more and more of the classroom lectures as I was in the bathroom all the time. The instructors were getting worried as I was getting depleted and not looking well. I was shedding average of over 10 pounds a week. Life got worse, the trips increased and the pain got unbearable, and food was not staying in. I was working on an oncology floor at the time and convinced I had cancer, but I was not going to go through what I was watching all these people go through, I was just going to go to sleep and not wake up. I darn near did. Food stayed in about 10 min and then it was a violent exit. By the time I was diagnosed, I had lost 87 pounds, in just under 2 months, and a doctor who had been on maternity leave saw me and took me right away and made appts for tests.

I went to the tests not thinking they would be able to help me, my mother thought I was doing it to myself, thought I needed a psychologist, not a Gastrointestinal doctor. Anyway, I got diagnosed with severe crohns and meds were started immediately. I did not know what this was. Being in nursing school is not good when you get diagnosed with something. I learned so much about it, I was scared to death. I thought I was going to die nomatter what. I did the meds, and life did not improve. I missed as little school as I had to and went back well before docs would have liked. But I was determined to finish. I ended up in the hospital and did not respond to the meds, the docs pulled my mother aside and informed her that about all they could do was make me comfortable. I was not stable enough to take to surgery, I would not make it through it. And I was showing no improvement, only worsening. Well, I am a fighter and that just was not what I wanted to hear. I did start to improve, dealt with a lot of depression, but continued school. I graduated with a 3.95 GPA and went on to pass state boards. I was a nurse, but could not work as one, due to amount of time I had missed with hospitalizations and such. So, I took on a second job to work as a nurse, after all, it is what I strived so hard to attain.

It was a year after diagnosis that I was finally stable enough to do the surgery. I went in swearing that if I had to have a bag, they were to just let me die. I had that right, I could make that decision. It was my body, my decision. Luckily, I woke up without one. Life was good for a bit, I got married, moved to the city, and seemed to be doing alright, still on all sorts of meds, and no sign of remission, but I was holding my own. I had done TPN and a variety of meds.

I was married about 6 months and the obstructions started. I spent more time in the hospital than out, and the pain was never ending. Constant hurting and living in the bathroom. I was working, and managing to keep up with life. I was told by my docs that if I was going to have children, I needed to do it, as my body was not going to hold up much. We had the understanding that I would get to 110 before getting pregnant, and that was not going to happen, so I needed to get in gear now. I had to do fertility drugs, and finally got pregnant with my son. Life was improved while pregnant, I did not live in the bathroom. Rather than going 30 times a day, I was only going about 16-20 and that was a blessing. I started preterm labor and was hospitalized. Life was not to be this way. I had a premature baby, and a horrible flare of crohns. I delivered my son weighing in at 104, and within 2 weeks of his birth, I was down in the lower 80s. I was hospitalized and steroids yet again. TPN followed but no real improvement By this time, I had tried all treatments out there, and nothing had worked to slow the crohns, or calm it any. I had done total gut rest, I had done the methotrexate, I had done it all. NOTHING was working. Now, I had a child and it was just getting more and more out of control.

After a year of in and out of the hospital, I turned up pregnant again, well this was not to happen! I was told I would have to have fertility drugs to ever get pregnant. I should not have been able to do it on my own. Again, the pregnancy seemed to calm the crohns a bit, or so I thought. I started preterm labor with my daughter at 20 weeks and spent a majority of the pregnancy in the hospital on meds to keep contractions at bay. Life was not taking the path it should have. I delievered another premature baby, weighing in at 98 pounds. Within 2 weeks of her birth I was down to 72 pounds and not able to walk much, muchless take care of two small children. We did TPN again, to try to get weight built back up and strength. I improved some, but not much. When my daughter was 3 months old, I woke up one morning and could not see out of my left eye. I was totally blind in it. I went to doctor, who sent me to an eye specialist, and it was concluded that I had had a vascular Occlusion of the optic veins in the left eye. WHY? I subsequently was hospitalized and all thought Leukemia. Iwas showing signs of decreased immune system and high clotting factors. I underwent a Bone Marrow biopsy which showed that I had Factor V prothrombin disorder and homeosystine. These are two clotting disorders that cause the blood to clot entirely too fast and produce unusable red blood cells. I was put on coumadin, a blood thinner and underwent numerous blood tests , rather frequently to keep it at a safe level. All in all, I should never have had my children, or the surgeries and live to tell about it. I should be dead by now.

I underwent another surgery in November , my daughter only 10 months old. I had a hysterectomy, and a bowel resection. They took out over 14 feet of intestine. I thought , there has to be an end, this has to be it. I went home on TPN, and a pharmacy of meds. Life did not improve. I spent many days unable to care for my children, nor myself, relied on family and friends entirely too much. This was my life, and I had to come to terms with it. Though, I was not sure how to do so.

I returned to work, and life went on, the obstructions continued, the pain was constant, and I had no end in sight.

I had been hospitalized many times for obstructions and done the remicade, which almost killed me. I had done the chemo, I had done the steroids, I had done it all. Why was nothing working for me. I had more surgery to remove yet more of my intestines, there was very little left. I lived in the bathroom, wore diapers much of the time, and fed babies on the toilet. I finally tried the insertion of a feeding tube, into my stomach and tube feedings. I had done TPN so many times that I did not have good access for anymore. Insurance did not pay for this, so it was another expense I had to cover out of pocket. How could it get worse. They had been pushing for the ostomy everytime they opened me up, but that was the last thing I was going to do. I would rather die.

Well, the inevitable happened. I had more obstructions, unable to hold food down, and constant battle with weight. The tube feedings did not do much to help the weight or the nutrition status. I had to go talk to a surgeon about "the bag". They promised me it would be temporary and that it would make my life better. I would feel better, not live in the bathroom, be pain free, and able to raise my children. So, I scheduled it and my worst nightmare became a reality. I got my ostomy in March of 2004. The battle from there has not been an easy one, but I am alive. I have fought with appliances, skin issues, nutrition issues, and general, "why did I do this". Just 4 months after the placement of my ostomy, when I thought there was never to be anything of meaning in my life anymore, that I was destined to fight this battle along with all the others, alone. I had my children, but what kind of a mother was I able to be. I was at my lowest. I did not think life was worth it anymore.

I attended local support meetings and at their encouraging, I attended the Conference in Louisville, KY. I did not think this group could help me, I was a troll, I was not normal, and not worthy of anyone or anything. Boy, was I wrong. This group showed me that life is worth the batttle, that my kids deserved more than I was allowing myself to give, that I was worth something. I was human, and I was normal, but most of all, I was not alone anymore. I came home with a new outlook, and though still having issues with insurance, appliances, and health, I had a renewed hope. Only it was crushed again, just 2 weeks after the conference, I was in surgery again. My gallbladder had shut down and was nolonger working. They went in to remove it and found that my colon was in worse shape than it had been when they disconnected it. So, my ostomy became permenant and I nolonger was anatomically correct. Depression was at an all time high. My children had known nothing but mom being sick, in surgery, and how could I live with the thing that they told me was temporary and that I could not get to work for anything.

I continued the local support group, the online chats, and the message boards, but just felt empty. Conference was coming up again, so I planned to go. They had all helped so much, could I get back to that place again? I went to conference again, and I heard over and over, how well I looked and how much I had improved. I did not feel what the others saw. I learned that though I did not feel it, I had changed. I had accepted, and most of all, I was able to help others. I got the opportunity to speak, to introduce, to take part in what saved my life the year before. I realized a lot at the conference. I had spent many years battling the hardest battle of my life alone, and had shut myself to this wonderful group that was there for me, that knew and understood. I had chosen to battle this alone, atleast since the ostomy. I made a decision at that conference, to never shut myself off from those who have become a "family" to me. Again, the conference, the group of others, saved my life, my sanity, and helped me to realize that I am worth more than this illness has dealt me, and I can go on and continue fighting and come out on top.

My story is a long one, and there are somethings that are not in here, there are some aspects, and things that I have gone through that are just too painful to share, and I am trying to forget. But the one thing I will never forget is that I have a family out there, I have a group of individuals who are my rock, and they are there to lean on whenever needed. And I have no better way to put it , no words that will make sense, other than THANK YOU.

I am now active on the board of the local support group, happy with my ostomy---though it still lets me know it is the boss, and what I thought was the end, is really just the beginning. I have been thrown curve balls with every step of this journey, but now am learning to throw them back. I wish I would have done this along time ago. Life is good, and I want to live it.

LeeAnn Barcus

Crohns disease 15 years

Ostomy March 2004



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