Barbara's Story

Then in 1991 I got married, my first year of marriage was very hard, I lost about 20 pounds and had severe diarrhea. I could not eat anything without it being painful. My new husband couldn't understand the difference in me. He thought along with my family that maybe I was anorexic. My regular doctor finally sent me to a GI specialist. He suggested that I have an Upper GI Series. So off my husband Lou and I went to the hospital thinking, "ok I probably have some type of infection or stomach bug." My GI doc also thought maybe I had a parasite since my honeymoon was in Mexico last year. Well we where all wrong, the GI Series showed Crohn's Disease.

I was happy to hear that what I had been feeling all this time had a name but never did I think that I had something that would not go away eventually. I was admitted into the hospital the day I was diagnosed and started on IV steroids. Within 4 weeks I had a moon face and mood swings to match. I was a totally different person.

My doctor tried all sorts of meds for the next couple of years (pentasa, sulfa drugs, 6-mp, steroids) but nothing really put me in remission. I was working still and it was a nightmare. They're where some days that I could hardly make it to work without stopping to use the bathroom. And I only lived ½ mile from my job. I knew every bathroom in our town. Working became harder and harder. My diarrhea was so bad that I became dehydrated all the time, there was a hospital across the road from where I worked and at lunch time I would meet my doctors in the emergency room for an IV to hydrate me and then go back to work. It was crazy. I finally had to stop working in 1993 so I could be admitted to the hospital for IV Steroids again.

That's when Crohn's became my full time job. More doctors and more tests it seemed that my Crohn's was getting worse not better. I was never able to wean down on my prednisone. I would always wind up in the hospital every 6-8months for about a week. During all this madness my hubby and I thought about starting a family in 1995. My specialist told me not to have kids that it was too dangerous for me. I thought no way I am going to have a baby. I had done some research that the hormones in pregnancy actually help your crohn's flare. A lot a women with crohn's have healthy children. But they must start their pregnancy not being in a flare. Hard to do when I needed to get off my 6-mp to get pregnant. Steroid use in pregnancy is considered safe, so I decided to stay on my steroids while I had a baby. Well that baby was a boy, Luis Xavier, (we call him Louie) born October 17, 1996. He was a healthy baby but a bit premature, 6 weeks. He weighed 4lbs. small but healthy the steroids had matured his lungs so he could breath on his own.

I started back on my 6-mp right away and did ok. It was very hard being a new mom and having crohn's. I can remember when he would cry in the middle of the night I didn't know if I should run to him or to the bathroom first. Sometimes I would feed him while I was in the bathroom. What site that was! My crohn's always acted up at night. Fifteen months later baby #2 was on its way once again I stopped my 6-mp stayed on my prednisone. On November 7, 1998 a girl was born Victoria Elizabeth, she was 3 weeks premature but healthy. Now with two children and my crohn's flaring as always I had my hands full. Leaving the house became harder and harder. I was so afraid that I would not be able to get them out of their car seats in time for me to use the bathroom. My husband had a great idea, a port-a-potty. That port-a-potty went right into my mini-van. So off I would go around town and when I had to go I would pull over to the side of the road.

About six months after I had Victoria I was hospitalized again. My flares where getting worse. I started to notice blood in the toilet around this time (1999). I was on predinsone and 6-mp and it was not enough. The constant pain and diarrhea was horrible. So my doctors wanted me to try Remicade. So every 8 weeks I would have a remicade infusion. The blood lose was getting worse, I was always anemic. Being tired and in pain made it almost impossible to function as a mom and wife. I also started to see a hematologist who kept my blood tests in check. He would give me iron infusions or if my blood count was really low I would receive a blood transfusion. I lost count of how many blood transfusions I have had; all I know is that I don't have a drop of my own blood left in me.

In 2001 my husband and I went to see a new doctor in Florida, Dr. Ira Shafran, who specializes in treating Crohn's with antibiotics. He is a Gastroenterologist that researches Crohn's Disease. He believes it is caused by bacteria called MAP (Mycobacterium avium subs, paratuberculosis). I started his antibiotic treatment November 2001. The first week of antibiotics I couldn't even get out of bed I was so sick. I felt nausea and achy. I felt as if I had a really bad flu. And so it went I was trying the antibiotic treatment while still taking my prednisone, remicade infusions and 6-mp. All along I was still losing blood and have severe diheara.

In November 1992 I had an appointment for another colonoscopy. This time the results not only showed inflammation of the colon but low-grade dsyplasia. My doctors explained that the dysphasia would have to be watched very carefully. Dsyplais of the colon means that cells in your colon are pre-cancerous. The reason they change is that after years of inflammation and ulcerations your colon does not know how to heal itself, and the cells change from good to bad. The bad meaning dsyplasia. I thought great something else to worry about. As if having Crohn's wasn't enough. My Gastro specialist recommended that I have a colonoscopy every 4-6 months to watch the cells.

My next colonoscopy was in June 2003, and the results were even worse the dsyplaisa had now upgraded itself to "high grade". The next step for my colon was cancer. I was not prepared to hear this, I had fought so hard for the last 12 years and now surgery was Not even a question. It was going to happen. I had to have a total colectomy. I would live my life with a permantant ileostomy.

After this news I made an appointment with my family doctor, my hemologist, my surgeon and even put a call into my doctor in Florida. I went to each appointment with a copy of my biopsies to get their opinion. Each time hoping that the results where wrong. I know it sounds crazy but I was really hoping one of these doctors would say " no, there's no dsplaisia in your colon, you're fine, you do not need surgery." But of course no one said that. My surgeon scheduled my operation for August 18, 2003. That date is my grandmother's birthday and my father-in-laws birthday. I thought this was a good sign of all the days of the year that my doctor would pick this one. Maybe just maybe this was a good sign that my grandmother would be watching over me, she passed away 10 years ago. My father-in-law said he couldn't ask for a better birthday present, my health. It's was a nice thought.

In the beginning of August my emotions where all over the place. I was preparing my self for this life changing surgery and trying to keep it together enough to be mom to my kids. I did all of my back to school shopping for them; I bought all of their cloths, backpacks and lunch boxes and put it in their closets. I did every piece of laundry in the house. I really tried to keep busy. Keeping busy kept me from losing it totally. I even wrote, "what if letters" to my children and husband. You know the kind of letters that let your loved one know how much you love them just in case something goes wrong during surgery. I have to say my friends and family where very supportive but I just think that this whole time I was just not thinking clearly. I have never cried too much. My husband would come home from work and I would go outside and sit on my front porch and just cry like a baby for an hour. I didn't want my children to see me upset and crying, I didn't want to scare them.

My biggest problem was how to tell my children that I was going to have this surgery. I was going to be in the hospital for about 10 days, and they weren't going to be able to see me for about a week. I have never been away from them that long. I knew that I couldn't tell them at home for that reason that I didn't want to break down in front of them. One morning I took them out to breakfast (about a week before surgery) and told them that I was going to have my tummy fixed, and that this was a good thing, because then I wouldn't have to go to the hospital so much. They thought is was a good thing. I really tried to put it in a positive way. And doing it out side the house was easier; I can't really breakdown in Dunkin Donuts.

Surgery Day, August 18, 2003. That morning was the worst day of my life. Saying good-bye to my children nearly torn my heart out of my chest. The ride to the hospital my husband looked so tired and worried. He could hardly speak to me, and I to him. We were terrified. I wrote him a note the night before and gave it to my sister to give to him when I went in for surgery. I wanted to let him know how much I love him and that I would be home soon. My sister said he couldn't open the note, he just held it the entire time I was in the operating room. He was afraid it might be a goodbye letter.

I don't remember much the first two days after my surgery. My husband said I had a tube in my nose and one in my bum to drain the blood. I had plenty of morphine and spent those first two days very comfortable. Day three I got up and showered with the help of a nurse. I couldn't believe how weak I felt. I couldn't wake two steps without having to sit down. My ileostomy started to work that day also; I didn't know how to react. At first I didn't want to look, but then I thought this thing is going to be with me forever I better get used to it. At first the bag filled up pretty quickly. I can remember my nurse coming in at least every hour to empty the bag. I thought if this thing fills up every hour I will never get out of the bathroom. That's not much of an improvement; my crohn's had me in the bathroom just as much. I had a visit from a stoma nurse the next day and she put my fears to rest my explaining that at first the ileostomy will work a lot, but as soon as my body adjust to it, the output should slow down.

I had some setbacks while in the hospital, one evening my blood pressure dropped to 70/40. I had become dehydrated from the high output my ileostomy was putting out. That drop in blood pressure also put my kidneys into shock. The doctors had to put me in a 45 degree angle to get blood flowing to my brain and had to flush my IV full of fluids to keep my kidneys from failing. A 45-degree angle is not very comfortable when you just had surgery, my stomach hurt so much. I had to stay that way for couple of hours. But by the morning I had stabilized enough that the doctors let me sit up again. They also took out my pee catherdar and pumped up my IV so my kidneys would keep working. I was not happy because I had to pee every half hour, which meant I had to get up and go to the bathroom. I was so tired of calling the nurse that I asked for a portable potty to go next to my bed. I peed every half hour for the next day until my doctors felt that my kidney had recovered enough from the shock they had the night before.

Day four and five I tried walking but could only make it to the door of my room without sitting down. So the doctors got me a walker thinking I could practice walking more. I tried to walk but it was too painful and I just felt to weak. My husband would come to visit and help me walk and make me sit up more. I had no energy.

On day seven my children came to visit me for the first time. I made sure that I had showered and put on a nightgown of my own. I did not want to scare them. I wanted to look like "mommy". I was so nervous they would try to jump on the bed and ask a lot a questions but when they came into my room and I saw them it finally hit me as to why I had done this whole operation. But I need to be there for them and my husband. I needed to go home. The entire time that Louie and Victoria visited with me they spent in bed and just cuddling. It was wonderful the smell there little heads again. I had missed them so much.

That same day I had my first drink of water, and I was going to get my first meal. Soup and juice. Even though the site of the food made me nauseous I tried to eat but I got sick within minutes. I think a lot of me getting sick now was nerves. I was very nervous to eat because I didn't know how my ileostomy would react to food. Instead I drank some Ensures to try and get some strength back. After that I tried some cereal and crackers. And slowly I moved on the plain chicken. On day ten I got my staples removed and was told I could go home. Yeah! But I was so scared to go home with this bag! My doctors had set up a home care nurse to visit me the following day and I would see them in a week. I felt very lost. How was I going to learn to change the bag, clean it, drain it. My head was spinning.

Ok I am home after 10 days in the hospital, what a strange feeling to be home again. And now I will start my life without my colon. And with my new ileostomy. And so my story really begins here….?

...Barbara

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