Crohn's Disease - The effects on my family -my story

Crohn's Disease. What is it? It is an ulceration and inflammation of your intestines that causes your body to think something foreign is in your intestines and it eats away at itself. That is the simple explanation. It does not seem to be that important with that simple explanation but it is. It affects you, your spouse, your children, your parents, your boss and co-workers, friends and extended family.

Crohn's leads to so many people being affected by it. People don't understand that the pain you are in is real and acute. They can't understand how it makes you feel to not be able to use your own restroom or to not find one at all if you are out. They don't understand that it causes real depression or that it causes your self esteem to plummet. Your kids don't understand that you can't go on that play date with them suddenly because your stomach has started to go crazy on you. Your spouse does not understand why you can't go over to friends house tonight. Your boss and co-worker does not understand what it is and how it is affecting your health. They don't understand when you have been in the hospital for weeks on end and they need to get the job done so they need to get rid of you. Friends who don't know what it is make cruel jokes until you enlighten them. I once had a friend who was trying to explain Crohn's disease who said "She has a S.... problem." That broke my heart and I was so upset. As soon as I realized I needed educate her on what Crohn's really was she cried and apologized for her tacky comments. But people don't know if you don't tell them.

Crohn's disease is not something that you actually sit around and talk about at your dinner table so alot of people are not aware of what it is. And because of this it also makes it something you don't hear alot about. So here is my story.

Crohn's for me and my family has been a struggle for over 15 years. I am not the only with Crohn's disease but one of four. All the females in my family have Crohn's disease. However, I was the first diagnosed at age 25, 15 years ago. After that my grandmother, mother and aunt have all been diagnosed. The only other girls on our side of the family are my two daughters. I pray everyday that they don't have to go through what I have been through.

For five years I lived with the symptoms of Crohn's disease but could find no doctor to diagnose me. I was told repeatedly it was IBS (irritable bowel syndrome) and to try this and try that. None of that ever worked. At the same time my husband and myself were trying to have a second child, with no luck. We went through all the fertility testing up to the point of fertility drugs. We stopped at that point because we did not know if we were ready for the possibility of multiple births(his mom is a twin). After having gone through all this testing someone told me I should see their gastroenterologist for my stomach pains I had been having. I figured why not. The only thing that could happen was that he would say I had IBS also and we would be right back where we started. I made the appointment and went. He surprised me when he said he thought it was Crohn's disease. Not only had I never heard of that but I thought, "Wow, we have a diagnose and now I can be cured." Only partly right.

He scheduled an colonoscopy for the next day and confirmed his diagnosis of the day before and immediately put me on steroids for the inflammation. Guess What? Three weeks later I was pregnant. There was a really bad spot of inflammation right next to my uterus that was keeping me from getting pregnant. The pregnancy was what my OB/GYN called the worst he had ever seen but I now have a 14 year old daughter who was our miracle baby. Why do I bring up my daughter? Because we gave up on having another child of our own. We had no idea that my stomach problems would be affecting me having a baby. The problems did not stop there.

I had my first bowel resection in 1996. This was after I lost over 65 pounds in 6 weeks. I was down to eating one bite of food a day and maybe one or two sips of water. Anything at all that I ingested caused extreme pain and cramping. I could not even eat. I had two children by this time and I would make them eat and they would ask why I was not eating. My oldest daughter was eight and my youngest was 3. I was in the hospital for over three weeks. During this time I did not see my daughters at all. I was told that the doctors lost me five times on the table the night of my emergency surgery when my intestines ruptured. I will never ever forget the pain I was in that night. My mom just recently told me how hard it was on her to watch me in so much pain. She still cries when she thinks about how bad I was that night. She said that it was like I was going to literally die right in front of her. She stayed at my side after they got me out of surgery for days. Any time I woke up she was there and was always encouraging. She was being so brave for me. When she tells me about this now she can't keep the pain out of her voice or the tears away because it was so hard on her to see me like that. My youngest brother was there and he does not like to talk about it. Understand that this man was in the Navy and things did not make him squeamish but he says that he could not bear to hear me screaming in pain even after being given enough morphine to knock out a horse. My husband did not know what to do. His wife is gravely ill, he is working and he has two young daughters to look out for. He was torn in so many directions. This was the hardest on my children and husband. My daughters were daddy's girls but they were more mommy's girls, especially my youngest daughter. My oldest daughter always tried to take care of me when my stomach hurt or I would be crying in the bathroom. She tried to shield her younger sister from the pain that I was going through. My youngest daughter and I we so close that she did not like to be out of my sight. I think that is because her and I fought long and hard for her to be born and we were connected in a way that made it impossible for us to be away from each other. While i was in the hospital I did not see either of my girls. The doctors were not sure I would make it and we did not want the last thing they saw of me to be me in the hospital with all those tubes in me. But the doctors were wrong, Thank God.

When I got home from the hospital my youngest daughter was so angry and so happy all at the same time. For about a month I could not go anywhere if she could not be with me because she would cry inconsolably. She would sit next to me, almost on me, but I could not touch her. She was mad at me for being away so long and would not let me touch her. She would practically sit on me during the day and at night had to sleep in my arms. But she would not let me approach her she had to do it. I was being 'punished' so to speak because I was away from her for so long. Maybe we should have let her see me but at the time it was the right thing to do. It was so hard on her. She still has separation anxiety from me. While my husband worked me and the girls stayed with my in-laws for about a week. They were so wonderful. If not for them I don't know what we would have done. Family and their support is so important and not just your immediate family. You are going to require ALL of your family to support you emotionally and to understand what you are going through.

All the girls' life they have seen me with Crohn's disease. They have watched me cry when I go to the restroom. They have held my hand. They have wiped a cold cloth on my head when I get sick because I can't eat. They have tried to encourage me to eat. They have tried to protect me in ways no child that age should ever have to try to protect their parent. It should be the other way around. But Crohn's was making it impossible for me to be healthy. To this day, my oldest daughter still tries to be the mommy to her younger sister and tries to protect me. This is not right. I should be the one doing all this. My daughters should never have had to go through any of this.

I still end up in the hospital at least 3 or more times a year. I take so much medication at times I feel like I should open my own pharmacy. I miss activities with my kids and grandkids.

I get so sick that I miss days off from work and then to make up for it have to work 12 hours a day to catch up. That in turn just wears me down and makes me sick again. So it is a vicious circle. I would have so much work to make up that I could not take time off to go to various school activities for my kids. That is the hardest part of all this. How can they understand that yes, I am feeling better right now but have to make up for being sick a few days ago. I am their mother, yet I can't do everything I want to be there for them. No child should have to take care of the parent or try to explain why they are so sick. But mine do.

My girls are very strong and very kind and compassionate. I love them so very much and they love me even when I feel like I have failed them.

Over the years I have had 6 more surgeries and dozens more hospital stays and they never get any easier but here is what I tell myself.....It could be worse!!!!!!!!!!!!!!

Yes, that is true. I don't want anyone to feel sorry for me because it can be worse. I thank God everyday that I only have it as I do. I pray that one day He will heal me. Whether that day is now while I am a living entity or the day I die that is ok with me, because I know He will, in His own time and on His own schedule.

Crohn's disease is not the end of your life. You need to educate people on what it is. After my first surgery back in 1996 when they lost me, God gave me back. I have a new purpose. What is that purpose? To educate people on Crohn's disease. To listen carefully when someone talks about stomach issues and to give advice. To be a shoulder to lean on for others when they or someone they love are going through issues like my family does. To relate experiences from my life and on medications, doctors and treatments that I have done or have heard about. I don't want another family to have to go through what I do. But reality is that they do. I just hope that people realize that even though Crohn's is not dinner table converstaion that it is something to take seriously. Don't ever let it become one of those things that you will take of tomorrow.

There have been so many times where I scream why me. But I prefer the question, why not me? Because I have Crohn's I really have been able to help alot of people. I talk about it freely. I don't let it become such an embarrassment that I can't tell someone. I used to feel that way. I would be embarrassed to have to tell someone. I have learned that I can't do that, what if I could be helping someone by saying something and I miss that opportunity.

The biggest thing you can do to help yourself or someone you know with Crohn's disease is to learn about it. Be understanding. When they say their stomach hurts, believe them. Just because you can't see the hurt does not mean it is not there. Be compassionate. Trust in God to guide you through the ups and downs. And lastly, just Love yourself or Love that person, no matter what. They are not perfect but God still loves them just the way they are.

Someone recently said to me, if you truly believed in God you would be healed. I said God loves me just the way I am and how do you know that He does not like me just the way I am. I turn to God to help me get through the periods of depression and pain that I go through. I also turn to my family and friends. Talking about it does help because you do realize that someone else could be in so much worse shape than you are.

If anyone needs someone to talk to and you can't talk to those around you....I am here. Good Luck and God Bless.