My Cranky Bowel
Living With Crohn's... what is it and how it affects me.
<<<---- A healthy intestine vs an ulcerated intestine (Crohn's)
Since I began this journey, I've focused a lot on how I've been responding to treatments, but haven't fully explained exactly what Crohn's is, and how it affects my daily life. So I thought I should sum up the last couple of years and how I've gotten to this point. It is important to explain what my Crohn's is like, as the disease has such a range of complexities and severity that many cases are different for each individual sufferer, as well as many of the treatments are different; one thing about Crohn's globally however, is that there is no existing cure. It is my hope that treatments will become more effective with less serious side effects so that living with Crohn's does not have to be as humiliating and debilitating as it often is.
Crohn's disease is an immune disease that can affect anywheres of the GI tract from the mouth to the junktrunk. Mine happens to be in a common place right where my large intestine and small intestine meet. For whatever reason, my immune system believes that there is unhealthy tissue in my intestines, therefore it begins attacking (what is essentially healthy) tissue. It begins breaking down the lining of the intestine, causing ulcers, bleeding and pain. Crohn's disease is similar to that of Arthritis except that Arthritis believes that joint tissues has unhealthy tissue and begins breaking them down, one problem with an immune system that affects different areas of the body. Because there is no known 'cause' as to why this happens or how to cure it, the solution to treat the intestine is to suppress the immune system entirely. This means that I have a significantly higher chance of contracting a cold, flu or can not have any type of 'live' vaccine.. because my immune system is lowered by the medications I take, I'm more susceptible to picking up any bug. Prednisone, Humira (the injection I take) and Immuran (another common Crohn's med) are all ways to eliminate your immune system from breaking down the lining of the bowels.
My journey started after I graduated high school. I began having significant discomfort in my stomach that always seemed to be worse after eating. I had toyed with the idea that I may be lactose intolerant or have some kind of dairy allergy, but as time went on it seemed that no matter what I ate, I'd be in extreme discomfort and pain. Breakfast was the only mean I seemed to be able to digest and after being exhausted each day from the pain or bathroom runs, I knew something wasn't quite right. The difficult part of Crohn's was that at first I thought I may just be losing it... seeing several doctors who thought I simply had acid reflux or a touchy bowel made me feel isolated; like my concerns weren't being taken seriously and I was dramifying the situation. From those first attacks, it took over a year until I was officially diagnosed. I had been put on stomach relaxers, acid reducers and different diets; none of which had been very effective. I even had a gastro procedure done by a surgeon who proclaimed that because I was an otherwise healthy 17 year old, it was unlikely he would find anything; and he didn't... because he didn't look in the right end. (Bad humor. I know.)
After seeing a GI specialist, I was immediately booked for a colonoscopy. The procedure isn't the most glamorous experience but within 20 minutes of being in the recovery area, my doctor finally had an answer: it wasn't pretty but it was an answer and it was Crohn's disease. I returned home feeling like I'd finally pacified the situation and could begin to move forward with treatment, whatever that was. I felt optimistic about my diagnosis, I have a first cousin who has the disease and knew she had success with medication and life style changes, I felt like I could move on. Within a week of returning to Halifax, I began experiencing bleeding from my bowels and extreme pain. After a week I had to return to see my doctor for a follow up and to plan treatment but after she saw how ill I was at that point, she immediately admitted me to the hospital for my first stay. I spent 9 days at the PCH where I was given steroids via IV, morphine for pain and iron fusions for the loss of blood. At that point I'd hoped I'd be in the clear. Going to pick up the steroids (liquid prednisone) at the pharmacy after I was discharged was overwhelming. I left with something like 20 bottles of liquid prednisone and having that much medication opened my eyes to the fact that life would certainly no longer be the same from that point forward.
Because many Crohn's medications are high cost drugs, it is only possible to receive the highest level (or potency) of medication after you have failed all the initial ones. Until you have failed on lower medications, the government or your insurance plan typically will not cover any type of injections. The retail cost of one of my injections I currently take is approximately $1000.00 per injection (lasts for two weeks.) At this point in my recovery I was still on the initial medications, hoping that they would end my Crohn's flares.
In the summer of 2011 I began having a lot of bleeding from my bowels. I was intending to go to the Miss Canada pageant in a few days and the last thing I needed was to be doped up on Prednisone trying to navigate around the GTA. I knew I had to be checked out and hoped that within a couple of days I'd be good as new and able to fly. After a couple of days with little changes in bleeding, I had to postpone my flight. I figured if I had a couple of more days on the IV Prednisone I'd be ready to go... unfortunately on Canada day 2011, I passed out from lack of hemoglobin in my blood. (Typical level is around 120, mine was at 55). After another 'trip' to the bathroom, I began losing my vision and blacking out. Luckily I was able to reach the emergency buzzer and just as I lost consciousness, a nurse had come to the door. When I woke up, I had been put back into my hospital bed and the nurses were buzzing around me, poking for another blood vessel to start a second IV as well as checking my hemoglobin levels. I asked where I was, and asked for my parents and Bobby to be called, even though it was only 5am. By the time they'd arrived, I'd been started on the first of five blood transfusions I'd receive over the next day. I have never in my life been more grateful for those of you who get out and donate each year. I also felt extremely privileged to know that a dear friend Ashly Bickford who is an avid donator was in fact my blood sista (duped by me of course) with the same blood type.
Recovery from that point on was up and down, in the wake of the passing out from lack of hemoglobin, I saw my life extremely different. My mom took my pup to the door every night where Bobby would wheel me down with my two IV's in my wheel chair to see him, it broke my heart every single time he'd go to leave and I'd cry as he looked back trying to figure out why mom wasn't coming home with him. I spent many nights curled up in my hospital bed watching shows with Bobby, or having him wheel me down to the end of the corridor to watch the Canada Day fireworks. It is moments like that where you learn who your soulmate really is. On Canada day I was also rushed in for an emerg colonoscopy after I'd had transfusions to try and locate the source of the bleeding and had it not stopped soon, I would be taken to Moncton to have a surgery to stop the bleeding. My mom spent every night with me from that point on, in case I had to be taken. We read together, cried together and laughed together and I am so thankful for her friendship and company during those days. Luckily the bleeding seized up and I was free to go home after about 12 days in the hospital.
From this point on, I was started on the high level medication; I was given the option to take Humira (a self injectable medication from home) or Remicade (an IV infused medication given every 6 weeks at a hospital). I chose to do Humira for convenience and began receiving the needles. The needles are not enjoyable; the medication burns as it is being injected and when you first began it you receive a 'loading dose' which is 4 needles given in the stomach one after another. Once again, it was an overwhelming step, but thus I have continued with it. I gave my needles myself for a short period, but was getting frustrated because of the anxiousness, knowing how much it would hurt. After returning to Halifax for school, myself (and Bobby as he takes the same Crohn's medication) had a nurse come to our apartment every 2 weeks to give us our injection. She is a godsend and I am so thankful we had her during those times. I am now back to giving myself my own needle and giving Bobby his and feel much more comfortable with the process. (I still get a little freaked I'll admit, but it feels like such a relief to have it done).
Crohn's for me is difficult; it is unsettling; especially at times where I feel like I don't get to live like a normal 21 year old. While many of my friends are partying, eating whatever and having a busy social life; my life seems so different. I spend a lot of time home in bed, because my body needs a lot more rest than many people I know. Because I have chronic diarrhea, my body does not absorb enough nutrients through my intestine, so it is often difficult to get through the day without napping or laying down for a period of time. I eat a fairly bland diet, low in fibre as to avoid any further bathroom issues, lots of breads and carbs; mostly any foods that are white or yellow. For those of you who know me know that this is no problem because im a rice/pasta carb maniac anyways! It is difficult though at times to plan travelling, a meal or anything else where I may not be able to get to a bathroom should my bowel get a little cranky. Many say that Crohn's is humiliating; and i agree; though maybe with habit or maturity I have realized the inalienable truth; we all shit, I just happen to make a lot more mad dashes than most of you. I try to keep drinking to a minimum, not only because it doesn't really bother me otherwise, but also because it is one less irritant to put into my system and that may mean a healthier day tomorrow for me. I thrive on wild games nights at home, Netflix and spending time with my pooch. These are the changes I had made in my life and I feel lucky that I have so much support to do so.
I have days where I am sick and frustrated and cry myself to sleep and I have days where I feel like I AM Crohn's disease; though these are the days I must remind myself not to let it define me. There are days Bobby picks me up off the floor a mess and days where I call home pleading for reassurance. These things help me; though they are the sad truth that sometimes with a chronic illness you also feel like a bother to many.
There are days where I feel elated, normal and happy and where I am so thankful that the sun is shining, I can cook myself supper and some days where I can take Russell for a walk (like today!) These are the days I treasure, hold out for and try and be as grateful for as possible. These days often make the bad ones worth the pressure and pain and I know ultimately they will come.
In a perfect world, treatments would be more available and a cure would be closer. I am lucky that I am even able to receive hte medications I do and hope that by talking about Crohn's it will equal awareness and hopefully one day enough awareness will equal a cure. I will continue to fight for a Crohn's free life, a healthy future and the elimination of my cranky bowel.
Living With Crohn's... what is it and how it affects me.
<<<---- A healthy intestine vs an ulcerated intestine (Crohn's)
Since I began this journey, I've focused a lot on how I've been responding to treatments, but haven't fully explained exactly what Crohn's is, and how it affects my daily life. So I thought I should sum up the last couple of years and how I've gotten to this point. It is important to explain what my Crohn's is like, as the disease has such a range of complexities and severity that many cases are different for each individual sufferer, as well as many of the treatments are different; one thing about Crohn's globally however, is that there is no existing cure. It is my hope that treatments will become more effective with less serious side effects so that living with Crohn's does not have to be as humiliating and debilitating as it often is.
Crohn's disease is an immune disease that can affect anywheres of the GI tract from the mouth to the junktrunk. Mine happens to be in a common place right where my large intestine and small intestine meet. For whatever reason, my immune system believes that there is unhealthy tissue in my intestines, therefore it begins attacking (what is essentially healthy) tissue. It begins breaking down the lining of the intestine, causing ulcers, bleeding and pain. Crohn's disease is similar to that of Arthritis except that Arthritis believes that joint tissues has unhealthy tissue and begins breaking them down, one problem with an immune system that affects different areas of the body. Because there is no known 'cause' as to why this happens or how to cure it, the solution to treat the intestine is to suppress the immune system entirely. This means that I have a significantly higher chance of contracting a cold, flu or can not have any type of 'live' vaccine.. because my immune system is lowered by the medications I take, I'm more susceptible to picking up any bug. Prednisone, Humira (the injection I take) and Immuran (another common Crohn's med) are all ways to eliminate your immune system from breaking down the lining of the bowels.
My journey started after I graduated high school. I began having significant discomfort in my stomach that always seemed to be worse after eating. I had toyed with the idea that I may be lactose intolerant or have some kind of dairy allergy, but as time went on it seemed that no matter what I ate, I'd be in extreme discomfort and pain. Breakfast was the only mean I seemed to be able to digest and after being exhausted each day from the pain or bathroom runs, I knew something wasn't quite right. The difficult part of Crohn's was that at first I thought I may just be losing it... seeing several doctors who thought I simply had acid reflux or a touchy bowel made me feel isolated; like my concerns weren't being taken seriously and I was dramifying the situation. From those first attacks, it took over a year until I was officially diagnosed. I had been put on stomach relaxers, acid reducers and different diets; none of which had been very effective. I even had a gastro procedure done by a surgeon who proclaimed that because I was an otherwise healthy 17 year old, it was unlikely he would find anything; and he didn't... because he didn't look in the right end. (Bad humor. I know.)
After seeing a GI specialist, I was immediately booked for a colonoscopy. The procedure isn't the most glamorous experience but within 20 minutes of being in the recovery area, my doctor finally had an answer: it wasn't pretty but it was an answer and it was Crohn's disease. I returned home feeling like I'd finally pacified the situation and could begin to move forward with treatment, whatever that was. I felt optimistic about my diagnosis, I have a first cousin who has the disease and knew she had success with medication and life style changes, I felt like I could move on. Within a week of returning to Halifax, I began experiencing bleeding from my bowels and extreme pain. After a week I had to return to see my doctor for a follow up and to plan treatment but after she saw how ill I was at that point, she immediately admitted me to the hospital for my first stay. I spent 9 days at the PCH where I was given steroids via IV, morphine for pain and iron fusions for the loss of blood. At that point I'd hoped I'd be in the clear. Going to pick up the steroids (liquid prednisone) at the pharmacy after I was discharged was overwhelming. I left with something like 20 bottles of liquid prednisone and having that much medication opened my eyes to the fact that life would certainly no longer be the same from that point forward.
Because many Crohn's medications are high cost drugs, it is only possible to receive the highest level (or potency) of medication after you have failed all the initial ones. Until you have failed on lower medications, the government or your insurance plan typically will not cover any type of injections. The retail cost of one of my injections I currently take is approximately $1000.00 per injection (lasts for two weeks.) At this point in my recovery I was still on the initial medications, hoping that they would end my Crohn's flares.
In the summer of 2011 I began having a lot of bleeding from my bowels. I was intending to go to the Miss Canada pageant in a few days and the last thing I needed was to be doped up on Prednisone trying to navigate around the GTA. I knew I had to be checked out and hoped that within a couple of days I'd be good as new and able to fly. After a couple of days with little changes in bleeding, I had to postpone my flight. I figured if I had a couple of more days on the IV Prednisone I'd be ready to go... unfortunately on Canada day 2011, I passed out from lack of hemoglobin in my blood. (Typical level is around 120, mine was at 55). After another 'trip' to the bathroom, I began losing my vision and blacking out. Luckily I was able to reach the emergency buzzer and just as I lost consciousness, a nurse had come to the door. When I woke up, I had been put back into my hospital bed and the nurses were buzzing around me, poking for another blood vessel to start a second IV as well as checking my hemoglobin levels. I asked where I was, and asked for my parents and Bobby to be called, even though it was only 5am. By the time they'd arrived, I'd been started on the first of five blood transfusions I'd receive over the next day. I have never in my life been more grateful for those of you who get out and donate each year. I also felt extremely privileged to know that a dear friend Ashly Bickford who is an avid donator was in fact my blood sista (duped by me of course) with the same blood type.
Recovery from that point on was up and down, in the wake of the passing out from lack of hemoglobin, I saw my life extremely different. My mom took my pup to the door every night where Bobby would wheel me down with my two IV's in my wheel chair to see him, it broke my heart every single time he'd go to leave and I'd cry as he looked back trying to figure out why mom wasn't coming home with him. I spent many nights curled up in my hospital bed watching shows with Bobby, or having him wheel me down to the end of the corridor to watch the Canada Day fireworks. It is moments like that where you learn who your soulmate really is. On Canada day I was also rushed in for an emerg colonoscopy after I'd had transfusions to try and locate the source of the bleeding and had it not stopped soon, I would be taken to Moncton to have a surgery to stop the bleeding. My mom spent every night with me from that point on, in case I had to be taken. We read together, cried together and laughed together and I am so thankful for her friendship and company during those days. Luckily the bleeding seized up and I was free to go home after about 12 days in the hospital.
From this point on, I was started on the high level medication; I was given the option to take Humira (a self injectable medication from home) or Remicade (an IV infused medication given every 6 weeks at a hospital). I chose to do Humira for convenience and began receiving the needles. The needles are not enjoyable; the medication burns as it is being injected and when you first began it you receive a 'loading dose' which is 4 needles given in the stomach one after another. Once again, it was an overwhelming step, but thus I have continued with it. I gave my needles myself for a short period, but was getting frustrated because of the anxiousness, knowing how much it would hurt. After returning to Halifax for school, myself (and Bobby as he takes the same Crohn's medication) had a nurse come to our apartment every 2 weeks to give us our injection. She is a godsend and I am so thankful we had her during those times. I am now back to giving myself my own needle and giving Bobby his and feel much more comfortable with the process. (I still get a little freaked I'll admit, but it feels like such a relief to have it done).
Crohn's for me is difficult; it is unsettling; especially at times where I feel like I don't get to live like a normal 21 year old. While many of my friends are partying, eating whatever and having a busy social life; my life seems so different. I spend a lot of time home in bed, because my body needs a lot more rest than many people I know. Because I have chronic diarrhea, my body does not absorb enough nutrients through my intestine, so it is often difficult to get through the day without napping or laying down for a period of time. I eat a fairly bland diet, low in fibre as to avoid any further bathroom issues, lots of breads and carbs; mostly any foods that are white or yellow. For those of you who know me know that this is no problem because im a rice/pasta carb maniac anyways! It is difficult though at times to plan travelling, a meal or anything else where I may not be able to get to a bathroom should my bowel get a little cranky. Many say that Crohn's is humiliating; and i agree; though maybe with habit or maturity I have realized the inalienable truth; we all shit, I just happen to make a lot more mad dashes than most of you. I try to keep drinking to a minimum, not only because it doesn't really bother me otherwise, but also because it is one less irritant to put into my system and that may mean a healthier day tomorrow for me. I thrive on wild games nights at home, Netflix and spending time with my pooch. These are the changes I had made in my life and I feel lucky that I have so much support to do so.
I have days where I am sick and frustrated and cry myself to sleep and I have days where I feel like I AM Crohn's disease; though these are the days I must remind myself not to let it define me. There are days Bobby picks me up off the floor a mess and days where I call home pleading for reassurance. These things help me; though they are the sad truth that sometimes with a chronic illness you also feel like a bother to many.
There are days where I feel elated, normal and happy and where I am so thankful that the sun is shining, I can cook myself supper and some days where I can take Russell for a walk (like today!) These are the days I treasure, hold out for and try and be as grateful for as possible. These days often make the bad ones worth the pressure and pain and I know ultimately they will come.
In a perfect world, treatments would be more available and a cure would be closer. I am lucky that I am even able to receive hte medications I do and hope that by talking about Crohn's it will equal awareness and hopefully one day enough awareness will equal a cure. I will continue to fight for a Crohn's free life, a healthy future and the elimination of my cranky bowel.
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