Crohn's Awareness Month ~ I am a Crohn's Survivor {guest post}

Friday, November 16, 2012 AnnMarie Brown 0 Comments

I am a Crohn's Survivor.
I was diagnosed with Crohn's disease when I was just 19 years old.
This was the same year I met my husband who has been there every step of this unforgiving disease. Relentless is probably a better word.

I was one of the lucky ones I think. Although it was a fairly new disease at that time, I managed a very lengthy remission between 1991 and 2000. My first surgeries did not come until 2001, when after months of pain they found a hole in my intestine behind my liver. Although it started as something simple, and the surgery seemed successful, and I had been sent home, 2002 began with an ostomy. The reconnection site burst and I was rushed into surgery on Christmas Eve. An ostomy was my worst fear. I survived through many, many infections. I was toxic for months. Still, I persevered but not without days I had wished it was all over. My husband reminded me I had a young daughter waiting for me at home. That was a talk I really needed, and I started to fight back. Fortunately, although I had learned to cope with it, the ostomy was reversed 8 months later.

By 2003, I was once again healthy enough to live a fairly normal life on limited drugs. Many suggestions for “new” and “stronger” drugs were suggested, but I had a thought. I have Crohn’s disease, and will for my entire life. If I could live with my symptoms, why in the world would I start using drugs I may need in the future? Although there were a few other surgeries during this next 8 years, none had to do with my Crohn's and I was happy to move forward and enjoy my life.

My husband and I celebrated our tenth anniversary with our beautiful newly adopted daughter. We had chosen to adopt because, although there is no hereditary link proven, my maternal grandmother had the same disease. She was diagnosed just weeks before me. We chose not to take the chance of passing on this disease. It would end for our family with me. My Grandmother and I talked often about this disease. It is embarrassing as this disease is famous for causing gas and diahrea so one did not talk about it publicly. She remembered her grandmother with symptoms similar to ours, but there was really no proof, just speculation. If in this age of open conversation, we did not talk about it, then past generations definitely would not have.

2011 started with an incredible illness. It started on New Year's Eve. I became so ill I was bed ridden for 1 week. We thought I just had the flu.....except that after a week only got worse and the pain was unbelievable. Many say the pain of childbirth is close to the pain of Crohn’s disease. I swear during the next few months, if that is true, I should have repopulated the earth! Although my symptoms were obvious to me, and eventually my friends could see just how sick I had become, my doctors were oblivious. I fought everyday to try to keep up with commitments, and keep my life as normal as possible. The problem was, what do you do when no medical professional seemed to believe you? For 4 long months. I lost weight, I was so sick I was sleeping whole days away, and in mid April I was hobbling on a walker. I went bi-daily to walk in clinics, doctors, emergency units... anywhere I could think of, begging for help. Friends could not believe what was going on, and I think even began to think I was exaggerating.

This happens a lot. The disease and pain has such complete control over your life, if you are not careful it becomes all you have. Your friends cannot see pain. They can only take your word for it, and sometimes the description sounds so embellished, we are not believed. They decided to take control though, and thought up ways to take me and MAKE someone listen. They soon experienced what I have known for years.

Medical professionals blame everything on this disease. I used to say, if I walked into an emergency room with my head under my arm and asked for help, they would pat my arm, pop my head back on and say “it’s ok dear, it’s just your Crohn’s disease” and send me home.

So little is known about Crohn’s, that a lot of the time the answer a patient gets, is very vague… or so medically termed we have no idea how to proceed. The answer in their eyes is almost ALWAYS a drug regimen. Expensive, corrosive drugs that have so many side effects patients have more to fear from the cure, but can’t live with the problem. I have spent my entire illness avoiding these.

I woke up on April 29, 2011, and realized my stomach had split open. I had an actual hole! After weeks in emergency rooms, the infection that I, as a layman, could see, had circled with a marker and pointed out to so many medical people, had broken a hole where my belly button should be. This seems too unreal to believe, but it’s true. It was the start of a 2 year long fight for my life.

.....I called an ambulance and to this day can still hear the ambulance attendant ask what the trouble was. After a brief description he looked and said, “oh, you belly button is sweating.” Finally, a lovely man, Dr. Hugg, listened. He was shocked at my story, but fortunately, I had 2 friends who had rushed to my side, were there to back me up. I also had a long list of visits on my health card.

They rushed me to London, where they left me sitting in a wheelchair for 5 hours because I was too calm. The person with me was doing anything to make me smile and that apparently meant, although I had a hole in my stomach, I was not an emergency. Yes, that is what they told the Doctor, who found me sliding out of the wheelchair. She rushed me into a makeshift operating room, where they found out I was actually toxic once more. I do not remember what happened after I went into that room, or for almost 2 full weeks after that. I was told that they had to open the wound to drain the infection. I had a fistula. This is a word that terrifies me to this day. My grandmother died from complications due to a fistula and although this is 2012, and medical advances are available, the word brings tears to my eyes.

I stayed in the hospital for 42 days. My surgery could not be done until I started to get a bit stronger. I was on IV fluids and absolutely nothing by mouth. I believe this is when I started to realize how lucky I actually was. Many cards, flowers, emails and visits proved that I had a place in my friend’s lives. I was touched I meant so much to them, and looked forward to each morning’s ritual of getting up and getting dressed in my own pyjamas, cleaning my little cubicle, making my bed and deciding which of the items people had sent, I was going to use that day. Coloring books, magazines, stuffed animals, plants, crossword puzzles……and a dirty magazine! I did not stay awake long during those days, I napped often. I talked to my daughter as often as I could, and prayed. I prayed every day. I did not pray to get out of the hospital, I prayed for healing. I think my way of thinking started changing.

Debbie with her daughter in 2011
My surgery was booked for July 1st. On June 30th I felt awful and excited at the same time. It was my daughter's graduation day, and I would see her graduate grade 8. So I pushed through. It turns out I was toxic once more. I had apparently had another breakage in my intestine. The doctor jokingly told my husband later that if anyone said I had been full of *&%^, it was completely true! Again, I was unable to have anything by mouth and machines were attached to me everywhere. The surgery site was unable to be closed and I was left to heal by being packed three times a day. While on the operating table I had had to be resuscitated. I scared everyone in my life, and spent another 40 days in the hospital. Now the damage had been done. They had to remove 1/2 of my intestines, but this would not be the end of this tale. In the fall, lucky me, I had two fistulas break through my stomach again. We were on our way to surgery again and another long hospital stay. By now I had a pic line for fluids and IV permanently inserted in my right arm, to avoid the bouts of panic associated with the needles.

This time as with many patients, they were unsure if I would come out of this surgery without an ostomy. Again the terror welled up in me at the thought of living with an ostomy for the rest of my life. It is not such an awful thing to live with, but many Crohn’s patients see that as what comes when there is nothing left anyone can do to help us. It is not the object itself, it is what it represents.

Many Crohn’s patients feel out of control, because so many “professionals” guess what we need. No one ever asked me what I wanted. What we crave is some control over decisions about our health. I am beyond being able to control my disease. There are many side diseases that come with this, although getting all of them, plus some, is very rare. I am rare. I am the reason the last line of the drug sheets say “1 in 10,000 people MAY experience…”. I am allergic to one of the medications they had available 1980’s when I was diagnosed. Not just allergic, it paralyzed me! I have had eyeritis, arethema nodosum, infections, swelling and diahrea most of the last 25 years. I am smiling right now thinking about how strong I sometimes I forget I am.

The doctors had been pushing a drug called Remikade for many years now. Something I may not have mentioned, I am deathly afraid of needles. They make me pass out. This is not a great fear to have when you have a lifelong disease! I researched this drug and have turned it down many times. I am not afraid to try new drugs, I have been in numerous drug tests for Crohn’s, but the complications from this drug include so many cancers that I called a meeting of my parents, immediate friends and my husband and daughter. Not only is remikade an infusion every 6 weeks, it involves an IV each time too. Then, there were the side effects… and the cost. This drug is $5200 each time, not a year, every 6 weeks. This needed to be a decision we all made. I needed help making this decision.

The decision was not unanimous, and it came down to what I was willing to deal with. I went to bed that night and realized I wanted to live. I also realized at this time… I have all the control! I can say no, I can ask questions, and I can demand answers, and respect! I have always been an outspoken person. My friends know that I will not say things behind their back that I would not say to their face. Why wasn’t I dealing with doctors that way?

I also realized that even if the drug took away 5 years of the life I had left, I wanted to live every day the best I could. If that means taking this drug then that is what, I would need to do that. It was a relief to think that. I decided then to make the most of every day and every event. I decided that unless it was worth giving up one year of my life, family feuds and arguments with friends were not going to be a part of my new life.

I managed to get well enough to celebrate Christmas at home. We all thanked God that this horrible year was over… but apparently the disease was not listening to those prayers. In the early part of 2012, another fistula broke through. Surgery fixed that, and miraculously I snuck away again without an ostomy. I again was unable to have the surgery site closed but this time they hooked me up to a vacuum that packed my stomach and kept the infection out. It meant carrying the unit around and having to be nursed daily at home, but I chose to make my life my own. Friends supported me, and got me through this whole battle my body was having with itself. It did not stop me from going out, or traveling or shopping. I was not able to drive during this time due to the medication, but I have a wonderful group of supporters who helped me. I thank God for them every day.

I am alive and here to tell about it. My family and friends were there every day, throughout the awful days, the long recoveries and the decision to try a very new drug that had many awful side effects.

Fortunately, I am celebrating another Christmas with my friends and family. No surgeries for now, no pic lines or vacuums. Just me.

I am a survivor. I am strong. I am too stubborn to put up with crap from doctors. I will live to see a cure for this.........

When people find out I have Crohn's disease I often hear "oh my goodness, you poor thing... that’s an awful disease".I can now respond; "yes, I have Crohn's and it is awful, but I do not have cancer, it will not kill me, people have much worse to deal with than me".

  "Debbie and I share the same age and are both mothers to beautiful adopted daughters. That is where our similar stories end. Debbie has battled Crohn's for over half of her life. Debbie has a zest and love of life like no other. She lives every day to the fullest without regrets. She embraces everyone that comes into her life and loves them unconditionally. She truly is an inspiration to all that know her. I asked Debbie if she could please write a blog post for me to raise awareness for Crohn's Disease. I am beyond blessed that she took the time to share some of her life with all of my readers in this post. Thank you so much Debbie ~ Much love!"

** Disclosure: Posted by It's just my life... Images provided by Debbie. Opinions and comments on this blog are those of the author.  ** 

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