Well today I am 30yrs old and soon to be 31. It was just about 10yrs ago now I was FINALLY diagnosed with a health issue, it is Crohn's Disease. For all of my preteen and teen years I constantly complained of stomach pain and not feeling well. My Dr. always knocked it down to being overweight and a hypochondriac who suffered from the odd case of constipation. It wasn't until January 18, 2001 that I spent a half a day in the fetal position due to the unbearable stomach/abdominal pain I was experiencing. My mother, god bless her, phoned to check on me, which at the time, she made the instinctive decision to leave work and bring me to emerge. My amazing 5ft 1in 150lb mother draped as much of my, 5ft 8in 250lb frame over her right shoulder in order to transport me to her car as I was unable to remove myself from the fetal position due to the pain.
Living in a town of only 1100 people, you can imagine our medical care was fairly minimal at the time. Upon arrival the required information was taken and into a ultrasound I went. The diagnosis, a ruptured appendix. I was flown to the nearest city, Thunder Bay, ON Canada, where I was to have the appendix removed. I waited until 10:30pm for the surgeon to be ready for me and come check me out. As he felt around my abdomen, he was suspicious of the ruptured appendix and said to me, "I'm not sure this is just your appendix, what do you want me to do if it's not?" "FIX IT, please just fix it." He stated ok and proceeded to tell me I would be in surgery for approx 20 mins or so and a 3in incision would accompany the surgery. 11:00pm I was brought in for surgery. 20 minutes went by, my mother was waiting, another 20mins went by, she still was waiting, an hour passes she's starting to pace around the hall of the room in which my surgery was being performed.
Out came a nurse who sat my mother down and stated, "The Dr. was correct of his suspicion of this not being your daughters appendix, however her appendix is involved. There is a 3ft blockage of small intestine in which her appendix is wrapped around. The Dr. suspects it is Crohn's Disease however lab testing will need to be completed for official diagnosis. He will be out to speak with you as soon as he is finished, it may be a while yet. 2 more hours later, out came my night and shining Armour, Dr. Kirk. He explained to my mother that the 3ft blocked was like a cement cylinder that took at least ten years to get that way. On each end of the blockage were tears in which bile had leaked out and filled my body with bile, causing the Dr. to have to remove all of my intestinal track, liver, pancreas and spleen in order to suction the poison from my body in order to save me from the 12 hours away fro death I was experiencing.
My organs had begun to shut down which was also a contributor to the pain I was experiencing on top of the blockage and tears. All organs, minus the 3ft intestinal blockage, was placed back in my body. Needless to say my poor mother was devastated. I awoke from my surgery feeling a tremendous amount of pressure and pain in my abdomen area, I look down only to see my abdomen is entirely wrapped in gauze, I vaugly remember thinking to myself, uh oh something else was wrong. My mother was looking at me with helplessness in her eyes holding my hand saying don't move Rachel, Dr. Kirk will be right here, I drifted off for a few short few moments. I open my eyes again to have one hand in my mothers hand and the other in my surgeons. "Hi Rachel, it's me Dr. Kirk, I want to explain a few things to you. I have been here since your surge as I wanted to speak with you personally when you woke.
My suspicions were right, there was something more and I fixed it as you requested. However were not done but we will get to that."So he went on to explain to me what had happened as stated above. From there he added on, "Now, you were my last surgery of the day since 8:00am and your body could only handle so much. So you are going to notice on your stomach a stoma and colostomy bag. Your surgery took 3hours to complete and I was not about to begin your reversal at 2 a.m. as I did not want to jeopardize any of the progress I had made, not to mention how well your body has handled everything thus far. A stoma is your intestine attached to the outer of your abdomen and the colostomy bag is the wafer and bag of which is placed over the stoma in order to provide a place for drainage from what will be dispensed from your stoma." I started to bawl, thinking my life was over, he and my courageous mother held my hands so tightly telling me it was going to be okay and I would make it through.
He also went on to inform me there were two 3ft drainage tubes in each side of my abdomen that would be removed in a few days once swelling and draining comes to a halt. He explained my colon was no longer operational and upon reversal my body would learn how to use it again. He apologized for everything that had gone on however we needed to be positive and look forward on making it through. He then encouraged me to rest as that would be best for me and my body at that time. The next morning he returned to inform me of the work that was ahead of me if I wanted a reversal and training on dealing with the colostomy etc..He also stated it took at least 10yrs for my intestines to get to the point they were at and couldn't figure out how I never was detected.
I did fill him in on my past history of being told I was a hypochondriac. He made it quite clear he would be speaking with my family doctor. From there the work began and I pushed myself to not allow this awful disease to rule me. The pain was horrendous during my hospital stay to the point of the morphine dose I was on was enough to kill an elephant my doc stated. But I made it through it and returned home with my parents to heal. It was not a week I was home and had to return to the local hospital as the incision to which my stoma sat upon was cut in the incorrect position due to the surgeon going in for my appendix and not intestines. This created the inability for my wafer and bag to sit correctly over my stoma causing much skin deterioration do to the bile that would leak out and sit under my wafer, eating away at my skin.
I basically stayed in the hospital for two weeks without my bag and wafer on laying on my side allowing my stoma to drain into a container in order to heal my skin. My family doctor did pay me a visit with a great apology however needless to say I was not empathetic towards his compassionate apology. Regardless, I healed enough to the point in which I was able to return home and work together with my mother and in home nurse until I was able to visit with my surgeon again to decide on a reversal or not. I was able to hang with friends a bit while having my stoma or as we referred to it as, "Turbo," lol you could only imagine why, it was not quiet and was quite peppy, so to say, lol. On Feb 19, 2001, I returned to my surgeon, completing the fifteen sit ups I needed to be able to complete for the reversal to take place.
I was fortunate enough to have the reversal however have been battling the ability to control the disease since. I have been on many many medications and now awaiting Remicade injections approval from the Ontario Drug Trillium Benefits Program as my final hope.Previous meds were Pentasa, Budesonide, Prednisone, Asacol, Imurane and Loperamide. My most responsive has been the Loperamide, however, it just shuts your bowels down, appose to fighting inflammation. I average many visits to my "Second Office," as all us at work refer to my "Throne" as. Foods bother some days and not the next so to follow a special diet does not work for me. I find healthy food are awful for me and I am the rare 2% of overweight Crohn's patience, surprise considering the one positive thing upon discovering my Crohn's Disease was that I may finally become thin, nope, lol, did not happen.
I average anywhere from 6-16+ visits to the washroom per day. Much mucus and foam accompany the water like bowel movements I experience. I often suffer from anal fistulas and severe anal pain, abdominal pain, vomiting and stomach pains. I am regularly suffering from exhaustion, hot n' cold sweats, depression and people not understanding of course. I now have a herniated bowel where my stoma was and am unable to have it fixed due to the condition of my Crohn's and not having it under enough control. I was told after my surgeries I was not going to be able to have children and I now am a VERY proud mother of an 8yr old daughter, Bree-Lyn and a 4yr old son, Nolan.
So far my children have not shown any signs of Crohn's disease although it is awesome at working in disguise. I am continuously working on putting together an album for my children with my health information and pics n' such in order for them to keep as they carry through life and procreate themselves. This disease is defiantly an awful one and can feel as though you may not be able to beat it and stop it from controlling your life, BUT you can. It takes alot of strength, dedication and belief and you can prevent it from controlling your life, Its hard and may seem damn near impossible however don't let it become your control. If at times you must let it temporarily win, thats okay as we all need a break, just don't let it control always and forever!
~Rachel (Crohn's Warrior)
Living in a town of only 1100 people, you can imagine our medical care was fairly minimal at the time. Upon arrival the required information was taken and into a ultrasound I went. The diagnosis, a ruptured appendix. I was flown to the nearest city, Thunder Bay, ON Canada, where I was to have the appendix removed. I waited until 10:30pm for the surgeon to be ready for me and come check me out. As he felt around my abdomen, he was suspicious of the ruptured appendix and said to me, "I'm not sure this is just your appendix, what do you want me to do if it's not?" "FIX IT, please just fix it." He stated ok and proceeded to tell me I would be in surgery for approx 20 mins or so and a 3in incision would accompany the surgery. 11:00pm I was brought in for surgery. 20 minutes went by, my mother was waiting, another 20mins went by, she still was waiting, an hour passes she's starting to pace around the hall of the room in which my surgery was being performed.
Out came a nurse who sat my mother down and stated, "The Dr. was correct of his suspicion of this not being your daughters appendix, however her appendix is involved. There is a 3ft blockage of small intestine in which her appendix is wrapped around. The Dr. suspects it is Crohn's Disease however lab testing will need to be completed for official diagnosis. He will be out to speak with you as soon as he is finished, it may be a while yet. 2 more hours later, out came my night and shining Armour, Dr. Kirk. He explained to my mother that the 3ft blocked was like a cement cylinder that took at least ten years to get that way. On each end of the blockage were tears in which bile had leaked out and filled my body with bile, causing the Dr. to have to remove all of my intestinal track, liver, pancreas and spleen in order to suction the poison from my body in order to save me from the 12 hours away fro death I was experiencing.
My organs had begun to shut down which was also a contributor to the pain I was experiencing on top of the blockage and tears. All organs, minus the 3ft intestinal blockage, was placed back in my body. Needless to say my poor mother was devastated. I awoke from my surgery feeling a tremendous amount of pressure and pain in my abdomen area, I look down only to see my abdomen is entirely wrapped in gauze, I vaugly remember thinking to myself, uh oh something else was wrong. My mother was looking at me with helplessness in her eyes holding my hand saying don't move Rachel, Dr. Kirk will be right here, I drifted off for a few short few moments. I open my eyes again to have one hand in my mothers hand and the other in my surgeons. "Hi Rachel, it's me Dr. Kirk, I want to explain a few things to you. I have been here since your surge as I wanted to speak with you personally when you woke.
My suspicions were right, there was something more and I fixed it as you requested. However were not done but we will get to that."So he went on to explain to me what had happened as stated above. From there he added on, "Now, you were my last surgery of the day since 8:00am and your body could only handle so much. So you are going to notice on your stomach a stoma and colostomy bag. Your surgery took 3hours to complete and I was not about to begin your reversal at 2 a.m. as I did not want to jeopardize any of the progress I had made, not to mention how well your body has handled everything thus far. A stoma is your intestine attached to the outer of your abdomen and the colostomy bag is the wafer and bag of which is placed over the stoma in order to provide a place for drainage from what will be dispensed from your stoma." I started to bawl, thinking my life was over, he and my courageous mother held my hands so tightly telling me it was going to be okay and I would make it through.
He also went on to inform me there were two 3ft drainage tubes in each side of my abdomen that would be removed in a few days once swelling and draining comes to a halt. He explained my colon was no longer operational and upon reversal my body would learn how to use it again. He apologized for everything that had gone on however we needed to be positive and look forward on making it through. He then encouraged me to rest as that would be best for me and my body at that time. The next morning he returned to inform me of the work that was ahead of me if I wanted a reversal and training on dealing with the colostomy etc..He also stated it took at least 10yrs for my intestines to get to the point they were at and couldn't figure out how I never was detected.
I did fill him in on my past history of being told I was a hypochondriac. He made it quite clear he would be speaking with my family doctor. From there the work began and I pushed myself to not allow this awful disease to rule me. The pain was horrendous during my hospital stay to the point of the morphine dose I was on was enough to kill an elephant my doc stated. But I made it through it and returned home with my parents to heal. It was not a week I was home and had to return to the local hospital as the incision to which my stoma sat upon was cut in the incorrect position due to the surgeon going in for my appendix and not intestines. This created the inability for my wafer and bag to sit correctly over my stoma causing much skin deterioration do to the bile that would leak out and sit under my wafer, eating away at my skin.
I basically stayed in the hospital for two weeks without my bag and wafer on laying on my side allowing my stoma to drain into a container in order to heal my skin. My family doctor did pay me a visit with a great apology however needless to say I was not empathetic towards his compassionate apology. Regardless, I healed enough to the point in which I was able to return home and work together with my mother and in home nurse until I was able to visit with my surgeon again to decide on a reversal or not. I was able to hang with friends a bit while having my stoma or as we referred to it as, "Turbo," lol you could only imagine why, it was not quiet and was quite peppy, so to say, lol. On Feb 19, 2001, I returned to my surgeon, completing the fifteen sit ups I needed to be able to complete for the reversal to take place.
I was fortunate enough to have the reversal however have been battling the ability to control the disease since. I have been on many many medications and now awaiting Remicade injections approval from the Ontario Drug Trillium Benefits Program as my final hope.Previous meds were Pentasa, Budesonide, Prednisone, Asacol, Imurane and Loperamide. My most responsive has been the Loperamide, however, it just shuts your bowels down, appose to fighting inflammation. I average many visits to my "Second Office," as all us at work refer to my "Throne" as. Foods bother some days and not the next so to follow a special diet does not work for me. I find healthy food are awful for me and I am the rare 2% of overweight Crohn's patience, surprise considering the one positive thing upon discovering my Crohn's Disease was that I may finally become thin, nope, lol, did not happen.
I average anywhere from 6-16+ visits to the washroom per day. Much mucus and foam accompany the water like bowel movements I experience. I often suffer from anal fistulas and severe anal pain, abdominal pain, vomiting and stomach pains. I am regularly suffering from exhaustion, hot n' cold sweats, depression and people not understanding of course. I now have a herniated bowel where my stoma was and am unable to have it fixed due to the condition of my Crohn's and not having it under enough control. I was told after my surgeries I was not going to be able to have children and I now am a VERY proud mother of an 8yr old daughter, Bree-Lyn and a 4yr old son, Nolan.
So far my children have not shown any signs of Crohn's disease although it is awesome at working in disguise. I am continuously working on putting together an album for my children with my health information and pics n' such in order for them to keep as they carry through life and procreate themselves. This disease is defiantly an awful one and can feel as though you may not be able to beat it and stop it from controlling your life, BUT you can. It takes alot of strength, dedication and belief and you can prevent it from controlling your life, Its hard and may seem damn near impossible however don't let it become your control. If at times you must let it temporarily win, thats okay as we all need a break, just don't let it control always and forever!
~Rachel (Crohn's Warrior)
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