Over 54 Years of Crohn’s Survival

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Over 54 Years of Crohn’s Survival

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OK, Crohn’s = Stress and Stress = Crohn’s. What comes first? CROHN’S!!! My name is Steve S. If I can survive 54 years of Crohn’s you should have no problem. Avoid stress and go to your doctors. In time you will know what works and what doesn’t. Only a small portion is here and with my Crohn’s if I could survive this story the disease might just be an inconvenience in your life. Just don’t let it run your life. If I have learned to write and file patents, start companies and raise children I think any one has the power. I’m not that smart. You can learn a few things here from my mistakes and my experiences. Remember this is me not you.

I’m almost 59 now. I have had Crohn's since kindergarten. I had a stomach ach and had to stay home sometimes. My mother thought I was faking at first but soon realized I wasn’t. The doctor couldn’t find anything wrong. I was so sick I missed a lot of the 5th grade so I had to do it over sitting on a pillow most of the year. I lost all my friends and was labeled a dumb slow kid. This doesn’t happen now thank god. I was placed in slow classes. Does Crohn’s impact a child’s life? YES!!! I went to doctors and developed the usual fistulas and was anemic. They didn’t know what was wrong with me and everyone, except my parent’s, thought I was faking being ill. Some people still think that including my kids (wife taught them). Regardless I pushed myself and became a real good snow and water skier. I was able to skate around my Crohn’s by not telling people and taking employment I could work in. I wasn’t diagnosed until 1973, when I was 22 yeas old. I was in the middle of Washington State driving home to Seattle and my gut blew up. Lucky I was close to a small town and an ambulance took me to the local hospital. The doctor looked at me and said, “you have Crohn’s Disease”. At least I finally knew why I was so different from everyone else. I finally had the reason everything was so hard. Oh, I was also lactose intolerant, which we never addressed, so that really irritated my Crohn’s. But I still didn’t know this was a life long deal.

6 months later in 1974 I married the girl that was with me that day. In 1976 I once lost so much weight I was only 105 lbs down from 130. I should be about 145. I'm now 147 lbs. I was bed ridden and on an Ensure diet. I took a lot of prednisone for over 25 years and it took its toll. From 1974 to 1990 I was in the hospital about 2 times a year with massive internal bleeding. We had 2 children in 1983 and 1985 and I was also starting a small manufacturing company. I have had about 3 companies and about 32 other jobs from engineering to inspecting 747’s. In 1993 one of my public works supervisor told me he didn’t like sick people working for him and later fired me after 3 years. The union told me to sue and I won. Seems the county was firing persons that may have to use the Family Medical Leave Act they were going to adopt. Discrimination is out there in a big way so smaller companies, like engineering firms, are easier to work for.

In 1985 I built a house on 1-½ acres just north of Seattle but had to sell it in 1990 after my mother fell deathly ill. Just after moving I was landscaping and that afternoon my gut blew up. They put 15 units in me and I had an emergency re-section. My wife started cheating on me at that time but I was in denial. In 2003 my mother passed away and my sister took my family home. I put $25K down in 1990 and purchased for $97K. My sister tortured me for 10 years in taking the roof from over my family’s head saying, “get ready to loose your house". I think the only people that understood my Crohn’s and what I had to deal with every day of my life were my mom and dad, but they are gone now.

As if things weren’t bad enough in 2003 in loosing my home but I also lost my job, my son (21) contracted testicular cancer (ok now), my wife was cheating, my wife was abusive to me, physiologically, financially, sexually, physically and in every way. In 2003 I contracted e-coli where I collapsed at home and was going into shock. I had to end up begging my wife to call for aid. My wife wouldn’t call an aid car but just looked at me hoping I would go in shock and die, I could see it in her eyes. She never did call and I had to fight back from going into shock. I also had to sell all my cars, my wife was also spending all our money at the rate of $5K to $14K a month (I didn’t get the statements), I received a non-warranted DUI, I financed my home I bought from the estate for $250K but it was a predator loan and I couldn’t pay it, my wife didn’t care about anything (now I know why), my wife didn’t communicate and after 30 years (she knew 14 years earlier) finally left, my wife taught my daughter and son that I wasn’t good enough to be there father or her husband, my son had put holes in doors and walls all over the house and the last straw is my wife tried to get my son to hit me with a base ball bat. OH, my Crohn’s was acting up, I wonder why? I also grew intolerant to Remacade, which I started in 2000. I was left with a house in foreclosure and no family left anymore except my son who is still brain washed and a work in progress. My wife moved out and in with a garbage man she had been with for some time (dumb me). My sister took our home so I didn’t even have that anymore. Not to scare you about marriage but my ex-wife was not a good person in the end. I'm sure you will do much better.

From 2006 to 2010 the judge in the small city where I received the DUI harassed me and revoked my deferred prosecution because I was using MM in 2008 legally (under WA State prescription laws) the only medication that was helping then. This judge put me in jail for 30 days, 90 days house arrest and fined me $3,000, which I can’t pay. I haven't had a ticket for more than 25 years and was a law abiding person. The judge called the auto financing company while I was in jail and had them repo my car while I was there. In Jan 2010 I was locked in to a 30-day nightmare of brainwashing, drugs and torture in a county maximum-security cell. It has taken a year of counseling to even get partly over this mess. But again it was CROHN’S combined with a bad person.

In 2001 I had my first Remacade treatment. About 2003 I started to get lockjaw about 12 to 24 hours later. I didn't make the connection. I received it after that about every 4 months but wasn't very good at the schedule. In 2005 I had a blood pressure drop while getting the infusion, which was corrected by stopping the application and more Benadryll. I waited until 2008 and decided to try it again because I was having flair up and was sick. I went home and 5 hours later my body started to started to hurt. For 8 hours I was only able to lay down with entire body pain and couldn’t move. I was about to go to the hospital but the reaction started to go away. It lasted about 10 hours. The Remacade was working for years but I was growing intolerant. So if you use Remacade also keep looking for something with less or no side effects. You may only be able to take it for a period of time but everyone is different.

Now I am flat broke, have no car to make an income, can’t get my license until I pay the abusive judges fine off. I figure now I will need $10,000 to pay my fine to get my license, a car to get my life back together. But I’m alone now with no family and no help. My daughter didn’t even invite me to her wedding 2 years ago. I’m sure at the pressure of my ex-wife. She knows she discriminated and was abusive and I was blind and now I know, so she can’t face me anymore. I’m 58 and having to start all over, STILL WITH CROHN’S. I am a product developer and have some research ideas. I want to work on improving hydrogen production or a new product idea. God knows I need help now to get part of a life back. It is pathetic that people with the least are ripped off the most.

Here are a few things. Your parents, spouse (if honest and nice) and oldest friends are the best support because they know the real you. Don’t be afraid to seek consulting if you need someone to dump on about Crohn’s. Sometimes a spouse or family members think your full of it so avoid their cold shoulder, they will just make you feel alienated. If they are nice, communicate and understand than that’s great. Get support from friends and family, avoid stress, keep searching for what works, don’t let people take you down, marry someone that communicates and has compassion, don’t drink alcohol, research medications and alternative medicine, research and find good doctors, get to know your body, get plenty of rest, get checked for vitamin deficiencies, find people and employment you can work in, start a business if your able, now is a good time. OH, and avoid negative people. Most of you that are reading this are much younger. You can live a very productive, long and great life with Crohn’s. President Eisenhower had it, Mike Mcredy of Purl Jam has it. They had or have jobs that they could work around the Crohn’s, really enjoy and I think that’s the secret. I’m sure my story is not yours and doesn’t happen often, I hope. I do have a few friends that know me well and are understanding. But I also taught them how to water and snow ski. It is not the end of the world. Look at it as an opportunity to go a new direction with your employment and life if you want or have to. Good luck and hang in there. 54 years of living Crohn's experience.
SMS Seattle
:hang:
 
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Wow SMS Seattle. you have been through a lot. Thank-you for sharing your story. It is interesting how people react to people being sick. I know for myself it almost feels like I have to apologize for it. People really dont understand. I also like the theme of your thread being able to work around it.
Welcome to the forum - there are a lot of really great people on here and I am sure you can add a lot of suggestions to others struggle as well.
take care and Welcome :)
 
Hi SMS,
Thanks for sharing your story - and that is some story. I hope things turn around for you, you have been through enough. Your first paragraph is right on, so positive - I had no idea how the rest was going to turn out.

Good luck to you! Your experience will be great to share with others.
 
Hi SMS and welcome!

Thanks for sharing your story - it's a doozie! And after all that and what you are currently going thru - you still sound so positive. Thanks for sharing that positive attitude and reminding us that things do eventually get better. I hope they get better for you very soon.

With all your years of Crohns, I'm sure you'll be a real asset to our forum.

- Amy
 
Thanks for sharing, although mine and my families finances aren't as bad as yours, we still find it hard when I can't work. I also thank God that they are understanding, though it must have been rough for them during all the time I was ill and hadn't been diagnosed ~ they must have thought I was loopy I know I did!

I feel sad that you have had to face all these traumas, but mostly that you don't have someone to help you feel loved.

I hope you find comfort and someone nice soon.:goodluck: I hope this helps

kind regards

Ann
 
Hi SMS,
What a story you have. Thank you for sharing your positive attitude. I try every day to not let my Crohn's rule my life and have since I became sick about 9 years ago. It seems to be the only thing that I can do if I want to have any kind of a life. I to couldn't work my jobs anymore, because of all of the restroom breaks. So, I have now starting to write books. My first was an anonymous one just because of all of the abuse I endured through my 31 years of marriage, which broke up after I was diagnosed with Crohn's, seems he wanted more than I could give him. And right now, I have my second manuscript in with the publisher, this one is on Crohns and Depression. My motto and what I follow every day are these sayings, "Things don't just happen, they happen for a reason." And the other is "Live each day to the fullest, because you really don't know what tomorrow will bring." In my divorce, I gained part of a 401K of which now I am fighting our government, seems that they want me to pay them half of what I received out of my divorce because I needed it for bills, so took an early withdrawal. Gotta love em. I don't have the money, so now I receive Social Security Disability and pension, and my Social Security check is wiped out now to our government for back taxes. So in some respects, I know exactly what you are going through.

I sure hope that you can find some peace in your life soon and that you can find the light at the end of the tunnel.

Feel better
 
Thats alot of crap to have had to put up with SMS, Sounds like your in a new space with a positive outlook. Thanks for your story and thanks for sharing. Good things will happen.
 
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Thank you everyone for the positive notes. I just posted this yesterday and I'm glad I found this space. I can't believe the replies. When I was first diagnosed in 1973 no one knew what Crohn's was so I have been around for the awakening. I have to finish my profile but if anyone has any questions just ask. I can only speak for myself but some things are universal. Margie was one person that replied and she said she started to write and publish books. You defiantly can work with that and Crohn's. Because of my very diverse background I have given that a thought but my income needs are more immediate now. I wish you success. Keona, I developed GERD after taking so much prednasione. It's gone now with a little stretching by the doctor and Nexium. And the feeling of having to apologize? I have gone through that mode also, a lot. I have learned that apologizing for not being there is fine but you don't have to apologize for having Crohn's. I professionally restored classic cars in 1975 but fell so ill and was hospitalized I felt I had to apologize to my boss. I was surprised that he was very understanding. I still had to find other work because I couldn't work full time then but we talked and he and I understood both sides. Some people are abusive because they say they never get sick, they think they will get Crohn's from you, are ignorant or just plain mean because that is whom they are. Try your best to ignore them. It ironic that some of those people or sicker than me or not here anymore. Most everyone doesn't realize the yo yo life people with Crohn's have to put up with. As you know it's hard to concentrate with pain all the time and sometimes it gets very wearing. I have been on so much prednasione when leaving the hospital the next day was chopping wood (nuts but I thought I could fly). Mood swings from drugs are very common. I have also learned to work in the inspection industries and I found it really helps to have outside work that is a little flexible. Also moving around and walking all the time is good exercise and takes your mind off the pain. Like I said, we work 3 times harder to do the same work as a well person and sometimes in a lot of pain. It's not like my heart operation in which 5 weeks later I was back lifting boxes and stocking stores. Build your life within the boundaries of your abilities and severity of your illness. If it takes community college or university go! I have over 4 years of community college and it landed me several jobs. I am also a learning nut and have learned many things on my own such as building web sites. If you are here and in your 20's or 30's you will surely live to feel the cure. I hope to live that long because I can't imagine what it would feel like to not have Crohn's. I have had it 54 of my 58 years of life. It would be awesome. Be a total optimist might sound funny like you have your head in the sand but the other side is woo is me, which doesn't work. You might get burned sometimes but a positive attitude is imperative. Even if your in the hospital or doctors I have always tried to help them laugh and you would be surprised how much they like positive people. They want to help you even more. If you have any questions feel free to ask. I can only answer based on my personal experience. Don't be afraid, life goes on and medicine advances. Also at last Crohn's disease is becoming more recognized and not demonized. Again thank you everyone and if you know anyone in the Seattle area that is into R&D for hydrogen production, needs a web site built, patent work, drafting, business plans, technical writing, product R&D, marketing or project management work please let me know. I could use the work and income. PS God I would like a girlfriend also. Stay positive and look forward to the end of Crohn's YA!!
SMS Seattle
 
Hiya Steve
and welcome

Wow! I enjoyed reading that, what an inspirational story!
You MUST write all this down, get an agent, get a film producer, make it into a blockbusting film! There aren't any Crohns films, yours could be the first!
Johnny Depp could play you! Anne Hathaway as the bitchy wife!
In all seriousness Steve, you've come a long way hun, well done you!
lotsa luv
Joan xxx
 
Thanks, That would kind of be wild. What I wrote is just a fly buy it was even more eventfull. What is Pentasa? That is one med I haven't ever tried. I am trying Enocort now (because of a small flair) but I can't tolerate it.
 
Thank you Steve! I love to hear inspirational stories. Your story sounds a little like my late paternal grandfather. He had CD for quite a while and didn't receive any real treatment until he was older and already had the ulcerations. He was a fisherman who raised a very large family. He lived a full life and after being close to death when the surgeon performed his total colectomy, he was able to bounce back and live another 25+ years. When I start getting scared of my CD, I need to remember the success stories.
 
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