After the inital diagnosis, colonoscopy, and confirmation of Crohn's, my battle with medicines began. I remember a lady at our church praying that all I would have to do was take pills! Well, God answered that one - I eventually was taking anywhere from 15-19 pills everyday. I felt like some type of druggie! For those of you who don't know me very well, I don't do pills. I barely would take anything unless absolutely necessary. My biggest pill experience was trying to remember to take a daily vitamin or antihistamine during allergy season.
I was put on Entocort EC - 3 pills 1 time a day to start. This is a steroid, but it's supposed to be non-systemic - meaning it only releases in the digestive system and isn't supposed to cause all of the nasty side effects like a regular steroid would. My biggest issue with the medication was that it caused dizziness.
Later on - perhaps 3 months later, I was also given Pentasa - which is supposed to help induce remission. I also had to drastically alter my diet. Doctors will tell you that it shouldn't matter what you eat, but experience told me otherwise. Crohn's disease is an autoimmune disease that causes inflammation in your intestine. It was obvious to me that certain foods aggravated my condition. Not knowing where to start, I thought let's go bland for a while. Well, I kind of got sick of eating food that is basically all white. White potatoes, chicken noodle soup, bread, etc. got old real fast, like less than a week. I decided to purchase a couple of books to help me out. On Amazon.com, I found two great choices for me: Eating Right for a Bad Gut and 100 Questions and Answers About Crohn's Disease and Ulcerative Colitis. They were very informative and comprehensive books.
My next post will be about what my diet consists of.
Sunday, March 13, 2011
Friday, February 11, 2011
Seriously God...Crohns?
I am writing this blog for two reasons, mainly to let others suffering from Crohn's Disease or other chronic incurable diseases know there is hope and also as an outlet for myself. It's cheaper than psychotherapy! By the way, I am not a doctor, not affiliated with any medical company, nor do I know anything beyond what I have experienced personally and read. Please do not substitute what you see on this blog for expert medical advice.
I have never written a blog before, so please bear with me as I am sure I will violate some sort of blog etiquette at some point. I do have a few "rules" however. Comments are welcome, but only positive and encouraging ones or serious questions will be read and considered. All you naysayers can just stop right here. If you don't want to know about my disease and how my faith has helped me cope with it, then this is not the blog for you. Walk away if you feel you must make anti-Christian comments, as I will not tolerate haters.
For those of you who don't know what Crohn's disease is there are several websites out there with good information. I prefer http://www.ccfa.org/ - the Crohn's and Colitis foundation of America. Basically Crohn's is inflammatory bowel disease. It is an autoimmune disease. Doctors think it is genetic, but aren't actually sure of the exact cause. There is no cure, but it is treatable. Some people are even lucky enough to go into remission for years.
I guess I began having symptoms of Crohn's Disease in 1997. I was only 26 years old, had a young son under age 2, and had just started a new job as a church secretary. My husband had been laid off just before Christmas in 1996, and had a temporary job at a company he hated. The owner was an atheist, but my husband needed to work to support us. Needless to say, things were stressful for us. I had gotten a bad sinus infection the following spring and had taken antibiotics (Keflex) for it. I had the worst case of diarrhea for over a week. I couldn't stand up or even make it to the bathroom. Turns out I couldn't tolerate the antibiotic, but I was young and didn't know that I had damaged my digestive system. I also didn't know that you should eat yogurt or probiotics after a course of antibiotics. Eventually I "recovered" and didn't really have symptoms of Crohn's disease very often. Sometimes when I ate something greasy, chili, or Mexican food I would have an upset stomach and loose stools, but it was infrequent and I figured it just didn't agree with me. I assumed I had irritable bowel syndrome. Colitis ran in my family and several of my relatives had a "sensitive gut." I should have run to the doctor the day I found blood in my stool. Of course I was freaked out, but preferred to pretend it wasn't that serious and probably was just from too much wiping. Eventually I went to the doctor and told him of my problems, but I omitted telling him about the blood. You see I was deathly afraid of it being cancer. Not too smart! He concurred that I probably has IBS and gave me a prescription to use occasionally when I had problems. It did help, so I thought great - I can live my life.
During this time, my husband and I were what I will call casual Christians. We attended church, helped out with events, did the right things, said the right things, prayed when we needed something, gave money occasionally, etc. We didn't smoke, didn't drink (except at weddings or New Year's Eve) didn't gamble, etc. By all appearances we were living a Christian life. Not really! We didn't trust God with everything. We relied on ourselves to get where we were going. I didn't really read the Bible much, didn't do devotions, didn't tithe, hadn't dealt with some anger issues, and wasn't really on the same page as my husband about how to raise our son. I had gone through another job and my husband had gone through two more jobs during this time. We also were dealing with a child with learning disabilities, a speech impediment, and behavior problems. Life wasn't easy.
Then I found out I was pregnant. A bit of a surprise there! Our second son was born in 2003 with some metabolic problems that caused mini seizures. He ended up being fine, but I wasn't. We had a huge amount of medical bills and my husband was starting another new job. I wasn't working and our medical insurance was being COBRA'd. After we brought the baby home, I began a nasty bout of depression and panic attacks. I also had diarrhea a lot. Almost every week I would have a problem making it to the bathroom. I sought counseling from our Pastor's wife to avoid being admitted to the hospital's coping unit. For all of her faults (which I wouldn't know until several years later) she really did help me get through the depression and get on track with God. I began reading the Bible more, began praying more regularly, but still tithed sporadically. I wasn't working and we had that huge mountain of debt. Still a lot of stress.
Life plodded along. Then my brother-in-law died unexpectedly at age 47. I had just come out of a depression, but it was still a struggle to keep my head above water at that time. Why God? I was angry with him for a while over the loss of my beloved brother-in-law. I watched my sister slip into a depression and anger as well. I was floundering, but I kept going to the Scriptures and eventually God pulled me up. My family also pulled together for awhile. The peace didn't last very long. Before I knew it more turmoil. We still attended the same church, but my heart wasn't always in it. The church had some serious problems and they weren't being handled well. The church membership was dwindling and my former counselor and Pastor turned against our family. We had to leave the church. Fortunately out of that mess, God led us to a new church and a wonderful church family. Unfortunately our old church died off and closed its doors.
Now the medical problems begin. My dad suffered a nasty heart attack and had major surgery with all kinds of complications. I prayed constantly for weeks on end for his healing. He's still alive and kicking, but he's slowed down a bit. I think he's just glad to be upright and walking somedays. God is using him to teach our youth group and for some weird reason the kids love him. My aunt passed away shortly after my dad had his heart surgery. Yikes! More sadness and stress.
I was diagnosed with glaucoma at age 33 in the middle of everything. Family history was the culprit there. Then my husband was laid off from his job after about a year and a half. He was on unemployment and I had only been working at my current job for a few months. Needless to say, I had gained weight after each pregnancy and would have been considered obese. I actually got up to a size 20 at my heaviest. I am only 5'2", so you can imagine. I ate my way through all of the anger, stress, and craziness that was my life. Not to mention I have always had a bit of a pot belly along with many of my other family members.
I thought it was great when in March of 2007 I began to lose weight. Maybe that green tea and sort of healthy eating thing was working. Strangely, I would lose 1-3 pounds every week without even trying. Losing weight had never been this easy for me before. I wasn't complaining. Then my grandfather died while I was out of town. More stress = more trips to the bathroom. I hurt my back at work and was put on Naproxen. More trips to the bathroom. Then in June of 2007, I stopped with my family, after attending the funeral of a great-aunt, to eat. I was so sick with stomach cramps that night. All I could do was lay on the couch and moan. I felt horrible all weekend. Thought I had food poisoning. After a few days I felt better, but I couldn't tolerate any of the usual foods. I went to the doctor and he gave me something to help with the stomach spasms. A few weeks later I was laying in bed with a fever and severe stomach problems. It was the week of Fourth of July and I was on vacation from work. I laid in bed the entire time. I went back to the doctor and told him what I should have told him years ago - blood in the stool, chronic diarrhea, and now I had lost over 25 pounds without really trying. He ordered a CT scan.
On July 5, 2007, the doctor's nurse called me and said he thought I might have Crohn's disease and was sending me to a specialist. WHAT???? Seriously God - Crohns? I was speechless. You see there was a young mother from our old church who died from complications in surgery due to Crohn's Disease. Then I became scared. Of course I told my husband and my mom right away. Then I cried for a while. Then I prayed. Then God gave me the strength and courage to look up information on this disease online. Some of the things I read were encouraging but others felt like a death sentence to me. It was an incurable disease and experts weren't really sure what caused it. Some sufferers faced a life of surgeries, colostomies, cancer, and yes even death. I couldn't hardly breathe for that entire weekend. I wanted to curl up into a ball and just sleep for the rest of my life. I felt the depression sweep over me and darken everything around me. I didn't want to be touched or to talk to anyone. WHY? All I could ask was why me and why now? What did I do to deserve this? God - haven't I been through enough craziness? I just wanted to have it easy for a while.
After wallowing in my own little pity party for a few weeks, I figured I had two choices: curl up and die or do something about living. I had two kids to raise and a husband who loved me. Wonderful parents and siblings. A God who can conquer all was on my side. It wasn't going to be that bad. When I first met the gastroenterologist and he told me he had to do a colonoscopy - I wasn't so confident.
Everyone told me it wasn't that bad, just prepping for it wasn't fun. I was so miserable already that I couldn't even imagine having to go through the procedure. I was very scared. I knew that sometimes colonoscopies could go wrong. Bowel perforation was a big concern for me. I decided then and there that I had better make sure my last wishes were spelled out. How gruesome to try and think what I would want done in case anything went wrong. Of course I indicated to my husband that all life-saving measures had better be taken. I was only 36 years old, funeral planning wasn't exactly on my agenda (or his). We tried to joke around about this, but honestly my sense of humor flew out the window the day I heard the word Crohn's.
I was so sick during this waiting period, that I couldn't even pray anymore. I laid in bed for weeks that summer of 2007. I managed to keep going to work most of the time, but spent the rest of my time at home in my bed watching reruns of Smallville. (Thanks to Tom Welling and the rest of the cast for distracting me!) My parents, husband, friends, and church family had to pray for me.
When it finally came time for the big day before, I ate jello (no red or orange), broth, tea, 7 up, and gatorade. That night I took the pills (they were huge and there were a lot of them, but they do not use them anymore due to some bad side effects in some cases!!!), drank the gatorade and commenced staying near the toilet. I do not intend to gross anyone out, but I thought if someone out there has never had to prep for a gastro-intestinal test, then you should know - buy toilet paper with aloe, buy the medicated wipes used for hemorroids, and make sure you have plenty of clean underwear (or adult diapers) on hand. Basically I pooped constantly until about midnight. Then the next morning I had to finish the last of the pills and drink more gatorade and poop some more, until no more poop came out and it was only just clear liquid.
When I arrived at the outpatient center, I ran for the bathroom, got cheked in, changed into an "attractive" hospital gown, and got the IV started. Then I sat in a really cold room until they came to get me. Up until this time I had been shaking with fear and was so anxious that I am suprised my blood pressure wasn't off the charts. My husband sat with me in that room and I just felt a peace come over me and the words "It's going to be allright," were whispered to me. I felt the presence of Jesus there with me.
Then I had to walk down a very long hallway to the procedure room. It felt like I was walking forever. Once they got me situated, I was given a sedative, but I must have still been awake, because I tried to grab the doctor's arm once. I heard him say, "Give her another one, she's trying to grab me." I kind of giggled to myself and then I don't remember anything until I woke up in the recovery room. They fed me cake and everyone was fuzzy and kind of hard to hear.
The diagnosis was confirmed that I definitely had Crohn's. It was in my colon on the left side and at the illeum (where the small and large intestines are attached). I also had some ulcers in my colon and I had anal stenosis (narrowing) due to some scarring. At least I did not have any signs of cancer!!!!!!!! Praise God!!!!!
I have never written a blog before, so please bear with me as I am sure I will violate some sort of blog etiquette at some point. I do have a few "rules" however. Comments are welcome, but only positive and encouraging ones or serious questions will be read and considered. All you naysayers can just stop right here. If you don't want to know about my disease and how my faith has helped me cope with it, then this is not the blog for you. Walk away if you feel you must make anti-Christian comments, as I will not tolerate haters.
For those of you who don't know what Crohn's disease is there are several websites out there with good information. I prefer http://www.ccfa.org/ - the Crohn's and Colitis foundation of America. Basically Crohn's is inflammatory bowel disease. It is an autoimmune disease. Doctors think it is genetic, but aren't actually sure of the exact cause. There is no cure, but it is treatable. Some people are even lucky enough to go into remission for years.
I guess I began having symptoms of Crohn's Disease in 1997. I was only 26 years old, had a young son under age 2, and had just started a new job as a church secretary. My husband had been laid off just before Christmas in 1996, and had a temporary job at a company he hated. The owner was an atheist, but my husband needed to work to support us. Needless to say, things were stressful for us. I had gotten a bad sinus infection the following spring and had taken antibiotics (Keflex) for it. I had the worst case of diarrhea for over a week. I couldn't stand up or even make it to the bathroom. Turns out I couldn't tolerate the antibiotic, but I was young and didn't know that I had damaged my digestive system. I also didn't know that you should eat yogurt or probiotics after a course of antibiotics. Eventually I "recovered" and didn't really have symptoms of Crohn's disease very often. Sometimes when I ate something greasy, chili, or Mexican food I would have an upset stomach and loose stools, but it was infrequent and I figured it just didn't agree with me. I assumed I had irritable bowel syndrome. Colitis ran in my family and several of my relatives had a "sensitive gut." I should have run to the doctor the day I found blood in my stool. Of course I was freaked out, but preferred to pretend it wasn't that serious and probably was just from too much wiping. Eventually I went to the doctor and told him of my problems, but I omitted telling him about the blood. You see I was deathly afraid of it being cancer. Not too smart! He concurred that I probably has IBS and gave me a prescription to use occasionally when I had problems. It did help, so I thought great - I can live my life.
During this time, my husband and I were what I will call casual Christians. We attended church, helped out with events, did the right things, said the right things, prayed when we needed something, gave money occasionally, etc. We didn't smoke, didn't drink (except at weddings or New Year's Eve) didn't gamble, etc. By all appearances we were living a Christian life. Not really! We didn't trust God with everything. We relied on ourselves to get where we were going. I didn't really read the Bible much, didn't do devotions, didn't tithe, hadn't dealt with some anger issues, and wasn't really on the same page as my husband about how to raise our son. I had gone through another job and my husband had gone through two more jobs during this time. We also were dealing with a child with learning disabilities, a speech impediment, and behavior problems. Life wasn't easy.
Then I found out I was pregnant. A bit of a surprise there! Our second son was born in 2003 with some metabolic problems that caused mini seizures. He ended up being fine, but I wasn't. We had a huge amount of medical bills and my husband was starting another new job. I wasn't working and our medical insurance was being COBRA'd. After we brought the baby home, I began a nasty bout of depression and panic attacks. I also had diarrhea a lot. Almost every week I would have a problem making it to the bathroom. I sought counseling from our Pastor's wife to avoid being admitted to the hospital's coping unit. For all of her faults (which I wouldn't know until several years later) she really did help me get through the depression and get on track with God. I began reading the Bible more, began praying more regularly, but still tithed sporadically. I wasn't working and we had that huge mountain of debt. Still a lot of stress.
Life plodded along. Then my brother-in-law died unexpectedly at age 47. I had just come out of a depression, but it was still a struggle to keep my head above water at that time. Why God? I was angry with him for a while over the loss of my beloved brother-in-law. I watched my sister slip into a depression and anger as well. I was floundering, but I kept going to the Scriptures and eventually God pulled me up. My family also pulled together for awhile. The peace didn't last very long. Before I knew it more turmoil. We still attended the same church, but my heart wasn't always in it. The church had some serious problems and they weren't being handled well. The church membership was dwindling and my former counselor and Pastor turned against our family. We had to leave the church. Fortunately out of that mess, God led us to a new church and a wonderful church family. Unfortunately our old church died off and closed its doors.
Now the medical problems begin. My dad suffered a nasty heart attack and had major surgery with all kinds of complications. I prayed constantly for weeks on end for his healing. He's still alive and kicking, but he's slowed down a bit. I think he's just glad to be upright and walking somedays. God is using him to teach our youth group and for some weird reason the kids love him. My aunt passed away shortly after my dad had his heart surgery. Yikes! More sadness and stress.
I was diagnosed with glaucoma at age 33 in the middle of everything. Family history was the culprit there. Then my husband was laid off from his job after about a year and a half. He was on unemployment and I had only been working at my current job for a few months. Needless to say, I had gained weight after each pregnancy and would have been considered obese. I actually got up to a size 20 at my heaviest. I am only 5'2", so you can imagine. I ate my way through all of the anger, stress, and craziness that was my life. Not to mention I have always had a bit of a pot belly along with many of my other family members.
I thought it was great when in March of 2007 I began to lose weight. Maybe that green tea and sort of healthy eating thing was working. Strangely, I would lose 1-3 pounds every week without even trying. Losing weight had never been this easy for me before. I wasn't complaining. Then my grandfather died while I was out of town. More stress = more trips to the bathroom. I hurt my back at work and was put on Naproxen. More trips to the bathroom. Then in June of 2007, I stopped with my family, after attending the funeral of a great-aunt, to eat. I was so sick with stomach cramps that night. All I could do was lay on the couch and moan. I felt horrible all weekend. Thought I had food poisoning. After a few days I felt better, but I couldn't tolerate any of the usual foods. I went to the doctor and he gave me something to help with the stomach spasms. A few weeks later I was laying in bed with a fever and severe stomach problems. It was the week of Fourth of July and I was on vacation from work. I laid in bed the entire time. I went back to the doctor and told him what I should have told him years ago - blood in the stool, chronic diarrhea, and now I had lost over 25 pounds without really trying. He ordered a CT scan.
On July 5, 2007, the doctor's nurse called me and said he thought I might have Crohn's disease and was sending me to a specialist. WHAT???? Seriously God - Crohns? I was speechless. You see there was a young mother from our old church who died from complications in surgery due to Crohn's Disease. Then I became scared. Of course I told my husband and my mom right away. Then I cried for a while. Then I prayed. Then God gave me the strength and courage to look up information on this disease online. Some of the things I read were encouraging but others felt like a death sentence to me. It was an incurable disease and experts weren't really sure what caused it. Some sufferers faced a life of surgeries, colostomies, cancer, and yes even death. I couldn't hardly breathe for that entire weekend. I wanted to curl up into a ball and just sleep for the rest of my life. I felt the depression sweep over me and darken everything around me. I didn't want to be touched or to talk to anyone. WHY? All I could ask was why me and why now? What did I do to deserve this? God - haven't I been through enough craziness? I just wanted to have it easy for a while.
After wallowing in my own little pity party for a few weeks, I figured I had two choices: curl up and die or do something about living. I had two kids to raise and a husband who loved me. Wonderful parents and siblings. A God who can conquer all was on my side. It wasn't going to be that bad. When I first met the gastroenterologist and he told me he had to do a colonoscopy - I wasn't so confident.
Everyone told me it wasn't that bad, just prepping for it wasn't fun. I was so miserable already that I couldn't even imagine having to go through the procedure. I was very scared. I knew that sometimes colonoscopies could go wrong. Bowel perforation was a big concern for me. I decided then and there that I had better make sure my last wishes were spelled out. How gruesome to try and think what I would want done in case anything went wrong. Of course I indicated to my husband that all life-saving measures had better be taken. I was only 36 years old, funeral planning wasn't exactly on my agenda (or his). We tried to joke around about this, but honestly my sense of humor flew out the window the day I heard the word Crohn's.
I was so sick during this waiting period, that I couldn't even pray anymore. I laid in bed for weeks that summer of 2007. I managed to keep going to work most of the time, but spent the rest of my time at home in my bed watching reruns of Smallville. (Thanks to Tom Welling and the rest of the cast for distracting me!) My parents, husband, friends, and church family had to pray for me.
When it finally came time for the big day before, I ate jello (no red or orange), broth, tea, 7 up, and gatorade. That night I took the pills (they were huge and there were a lot of them, but they do not use them anymore due to some bad side effects in some cases!!!), drank the gatorade and commenced staying near the toilet. I do not intend to gross anyone out, but I thought if someone out there has never had to prep for a gastro-intestinal test, then you should know - buy toilet paper with aloe, buy the medicated wipes used for hemorroids, and make sure you have plenty of clean underwear (or adult diapers) on hand. Basically I pooped constantly until about midnight. Then the next morning I had to finish the last of the pills and drink more gatorade and poop some more, until no more poop came out and it was only just clear liquid.
When I arrived at the outpatient center, I ran for the bathroom, got cheked in, changed into an "attractive" hospital gown, and got the IV started. Then I sat in a really cold room until they came to get me. Up until this time I had been shaking with fear and was so anxious that I am suprised my blood pressure wasn't off the charts. My husband sat with me in that room and I just felt a peace come over me and the words "It's going to be allright," were whispered to me. I felt the presence of Jesus there with me.
Then I had to walk down a very long hallway to the procedure room. It felt like I was walking forever. Once they got me situated, I was given a sedative, but I must have still been awake, because I tried to grab the doctor's arm once. I heard him say, "Give her another one, she's trying to grab me." I kind of giggled to myself and then I don't remember anything until I woke up in the recovery room. They fed me cake and everyone was fuzzy and kind of hard to hear.
The diagnosis was confirmed that I definitely had Crohn's. It was in my colon on the left side and at the illeum (where the small and large intestines are attached). I also had some ulcers in my colon and I had anal stenosis (narrowing) due to some scarring. At least I did not have any signs of cancer!!!!!!!! Praise God!!!!!
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