A little about me and "my Crohn's"

(Calgary, Alberta)

I noticed this website while surfing the web by accident. I found myself reading many of the stories here and can't help but be amazed at how many people have this disease. I thought I would tell a little about me and my Crohn's but found myself writing a lot more. I read my story after writing it, it may seem long but I felt my story needed to be shared, so here it is...For those who are at a loss, the only suggestion I have is no other than to live your life to the fullest while you can. I truly understand first hand about the pain and frustration one goes thru. I was diagnosed when I was 18 but not before I had suffered a great deal since the age of 15. Doctor after doctor told me that I was overreacting, exaggerating, and making the pain real when it wasn't. I'll remember this for the rest of my life, the whole experience was unbearable. At 18, I was rushed to emergency with bad symptoms, and especially pain. I met a GP at the time that was kind enough to take the time to know me and put me thru a series of test which concluded that I had Crohn's. It was then that I had to have my 1st major surgery which involved removing my colon, my rectum and of course having an ileostomy. This time of my life was like living a real nightmare because all the pleas for medical help prior to this point were ignored and led to this surgery which could have been avoided with treatment. I ended up recovering in the hospital for 2 months, it wasn't easy. Time went by and I had to try to accept this "thing" stuck to my stomach, at the prime of my young life it was very hard to cope with. I then went on to live my life as normal as possible with more times spent in the hospital for various problems such as fistulas, abscesses, flare ups, and so on. I married at 22 and had a baby at 23 which again put my health at risk and I spent much of my pregnancy in hospital. I ended up getting another fistula on my stomach wall while pregnant which meant needing surgery. My surgeon suggested waiting after the baby was born before doing surgery therefore I was left with a 3 inch hole thru my stomach because the fistula had pierced thru, similar to an abscess I suppose. Needless to say I spent my pregnancy in rough shape however I was very happy to be having a baby. My son was born very healthy which left doctors very amazed. The next few years weren't any easier, in total I had to endure 18 operations which included my gallbladder removed, sections of intestines removed, a couple of kidney stones removed, ileostomy "redone", and a few more...I had been living as normal as possible over the years, dealing, coping, when after feeling somewhat healthy for a while, I felt sick again. A few days went by and the pain I was feeling was getting worse, worse to the point where I needed to go to emergency. I was admitted, went thru a series of tests, and a few days later the doctor told me that none of the tests showed any signs of Crohn's. I was very surprised because by this time I was in even worse pain, and down to 85 lbs. I begged the doctor to give me an IV as I couldn't hold anything in, not even a sip of water. The doctor refused and explained to my husband that there was nothing wrong with me and invited my family over to discuss my situation. I was so desperate by then, feeling so helpless, so ill and thought I was going to die. The doctor told my whole family that this whole thing was "made up", I was depressed. I had never been so humiliated in my life, I sat there barely alive and I didn't have the strength to argue my circumstance I felt so ill. After the family meeting my husband took the doctor aside and demanded that he do more tests, my husband knew that I could never fake something like this, he told the doctor there had to be other tests available. The doctor agreed to do one more test which was one that involved a white blood count. Half way thru the test the technician revealed that there was a lot of activity in my stomach and there was definitely something wrong. Specialists were called in and immediately gave me an IV, asking me a series of questions, wanting to know how long I had been left without care, astound that I had been left to suffer. I will always remember the concerned looks and comments of the two specialists who helped me. I was given huge amounts of prednisone, pain med, and was scheduled for surgery. While receiving the much needed care I needed, the first doctor spoke to my husband trying to deny that he didn't believe my illness, and was "let go" from my so called care by the two specialists. I've since been diagnosed with fibromylagia, osteoporosis from the years of prednisone/ cortisone intake. I would tell people to never give up, don't wait until it's too late for treatment where surgery becomes the only option. Believe in yourself, you and only you know your body, your pain and how and what you feel, don't let doctors tell you there's nothing wrong with you when you know yourself it isn't the case, don't ever give up! I'd like to tell you that my life is now better but that would be a lie. My husband has since been diagnosed with multiple sclorosis and not doing well. He could not keep a job due to his physical issues and has been off work since early December. He is waiting for financial help from the government and hasn't had any income in the meantime. I work full-time which is very difficult for me. We're now losing our home, can barely pay the bills because I don't make enough money, but I pay what I can. The recession has affected us greatly as we've lost the little bit of equity we had on our house, we have no choice but to walk away. The stress I live day to day is almost unbearable to handle, aside from trying to cope with my disease, I now have to care for my husband. Crohn's is not an easy disease to live with without having added stress, and not knowing where our next meal will come from. Diet and Crohn's go hand in hand so if you can, take care of your body; one day you may not have the chance...

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A little "more" about me and my Crohn's...
by: Anonymous

Thank you so much to the people who commented on my story. Your thoughts have touched me! Since submitting my story life has not been any easier. I hate to be negative but I feel the need to share more with you. My husband has taken a turn for the worse. His MS is now quite advanced, he has been in the hospital for over 2 weeks now; he cannot swallow, walk, he's lost his speech and he's very confused and has memory loss. The word is that he'll be in the hospital for a while, and now they're telling me that he may have to go into a "home". I'm devastated over this, I feel like I've lost my husband. I pray that the stress of this will not trigger a Crohn's flare-up, I've been at my husband's side day and night but unfortunately I have to go back to work tomorrow. I had taken time off since my husband was admitted to the hospital but I can no longer afford it, not that I could in the first place! My husband still hasn't received or have been approved for financial help from the government so it's difficult to go on. I spoke with a social worker from the hospital and hopefully she'll be able to get things going. I'm at a loss with no words to express what these deseases are doing to us. I know I'm always one to tell everyone to stay positive and live life to the fullest but I must say that I'm not able to follow this myself right now. Anyway I just wanted to put my feelings into words and I'm going to ask for the first time in my life that whoever reads this pray for us, please! Thanks for reading...S

Buggar Me

Well I guess I'll just go on my way rejoicing in the fact that I only have a heart problem and suspect that I have Crohns disease, I am 71 years old and you are so young, I hope you and your little family survive with some joy in life and a little good fortune as well, I send my love from Brisbane Queensland Australia, to you and your husband and son, may the sunlight always warm you all, and shine on your faces.
JIMBO.ooooo (hugs ) xxxx And kisses

by: Amiee

Wow that is quiet a story! I am so sorry to here about all of that.. But at least you are still here to live life and be with your child.. I can fully understand the part about knowing your own body and what it is telling you. All the doctors new i had IBD and an Illiostomy but wouldnt believe me when i told them i couldn;t eat a thing because my belly felt so bloated and i thought it was blocked and so was my stomach. They all told me i was over exaggerating. It wasn't until the pressure of it all had an effect on my breathing to the extent of not being able to that they took notice. They then had to pump my stomach and put i tube into the Illiostomy to unblock it. Then if you can believe it, it happened not only a few weeks later and they still didnt believe me then. At that time they didnt believe me till my scar from the op burst open oozing puss! Puss from an infection i got in their hospital! I have been through a rough time as well. Trust me there are alot more stories from where they came from and i am only 22.. There are only a handful of really good doctors out there.

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