- Joined
- Jan 5, 2012
- Messages
- 41
Hello Everyone!
I've been looking around reading the posts for a while now and decided it was finally time to create an account.
I am an (almost) 30 year old mother of two beautiful children. I've been married for 8 1/2 years.
I was finally diagnosed with Crohn's disease after about two straight weeks of hell back in 2003 (more about that in a bit). Now that I know what I have, I have symptoms going back to at least 1992 that could have been Crohn's all along.
I (like so many, I'm sure) was misdiagnosed for years and years. I would get an attack and end up in Urgent Care or in the ER. I was always told the same thing - it's probably a virus - they would give me anti-nausea meds, pain meds and tell me to go home and drink lots of fluid and get lots of rest. I remember on time when I was a junior or senior in high school laying on my parents bathroom floor and sobbing in so much pain. The only time it wasn't a "virus" was when a doctor told me he thought I had a kink in my colon...at least he was creative. :ybiggrin: A year and 1/2 or so before I was diagnosed I got what I know know was a recto-vaginal fistula. I asked my gyno about it and she thought it was a cyst and said not to worry about it. (Sorry to be graphic, but hey - we're all friends around here, right?) but I remember it would drain rectally until at one point it wouldn't anymore. It kept filling with fluid and was incredibly painful. I kept trying to squish it for some relief. And then I experienced one of the most horrifying, painful experiences in my life when it finally broke through to the surface...Awful!
So, back to the diagnosis... It was January 2003 - I was busy in my junior year in college and planning for our wedding in June. I got more sick then I've ever been in my entire life. I couldn't keep any fluids (including water) down for over 2 weeks. I lost so much weight and my wedding dress no longer fit! I was in and out of the ER 3 times before they started running a battery of tests on me (most I wouldn't wish even on my worst enemy). Finally after a CAT scan they said "We think you have Crohn's Disease". What?? I've never heard of that. What?? They sent me home and told me a schedule an appt with a GI and to get a colonoscopy to know for sure. I didn't even make it to the doctor before I made my 4th and final trip to the ER. I was so dehydrated and in misery. They finally realized that my 4 trips to the ER wasn't cutting it and admitted me to the hospital. Thank goodness for my husband. He didn't leave my side, didn't think hesitate to keep bringing me in to the ER and sat beside me every minute he could in the hospital. They scheduled me for my very first (of many) colonoscopy two days later and I had to do the prep in the hospital...with a roommate. At least she was pretty cool and encouraged me to keep drinking but still - what an awful experience. After the colonoscopy I was still coming out of it and they said I most certainly had Crohn's.
Next began my never ending quest for information and understanding as to what life with Crohn's actually meant. I had to drop my classes that term as I had missed so much class at that point. The first GI I started seeing put me on pentasa (16 pills a day?? Seriously?) That went well - or not. I have a hard enough time remembering to take meds 1x a day - let alone 4. My 2nd GI put me on a long term course of prednisone (hell, hell, hell!) After college we moved to Chicago and I had to wait a few months before my health insurance kicked in (all the wile still on prednisone) and then went through another round of "get to know a new GI tests". I was seeing a GI at Northwestern and he was really good. I can't remember what drugs he put me on but I finally got to taper the pred. I actually think I refused to take any meds. I had it mostly under control with diet at that point. Right before we moved out to CA we decided that it was time to start our family and after getting a clean bill of health from my OB we started trying and got pregnant with our daughter practically the minute we decided we wanted a baby. Pregnancy was bliss for me - I was in complete remission. My carefully kept diet went out the window and for the first time in years I could eat peanuts, popcorn, shrimp, anything I wanted.
In April 2006 I gave birth to my beautiful daughter by c-section (due to the fistula). She was perfect!! I had a slight flare after she was born and went into a full blown flare after I stopped breastfeeding her at 10 months.
I finally realized that it was time to get established with another GI. My GI put me back on Pentasa (Ugh!). I kept asking about my fistula because it was torture. He finally relented and said that he would maybe consider a biologic, but that he wasn't sure it would help. He suggested that I see another doctor (only a short 50 miles away) that had a clinical interest/specialization with IBD for a consultation to see if she recommended Remicade - but I would come back to him after seeing her.
I saw her and my life changed. She did a full history and exam in the exam room and then brought me back to her office to talk. She was the first doctor that I could really understand. She talked to me a lot about why I was experiencing the things, current research, treatments, etc. It was amazing. Then she said probably one of the greatest things I've ever heard from a doctor (other than "it's a girl" and "it's a boy") - "You can keep coming to see me if you'd like". She was so far away but has truly changed my life. She is incredible. She does as much as she can over email. She lets me schedule labs wherever and tests as close to home as I can. She is always up to date on the current info.
Anyway, she recommended Humira and she told me something that I will always remember. She said "You don't know what healthy is". You've been living your life and think this is normal, but with the right meds, I think you'll finally know what healthy really is."
She also ordered some blood work - including the test for Crohn's markers. When we got the results back, I was positive for 3 out of 4 and two of those were double positive. It was then after she went over those results with me that I realized that it wasn't something that I could just control with diet. I started Humira shortly after and man - was that life changing. She was right - I finally had a glimpse into what healthy was. I spent 2 1/2 years on Humira.
In 2009 we decided that it was time to expand our family and after lots of discussions and consultations we finally made the decision to move forward trying to get pregnant while staying on Humira. Shortly after starting to try we got pregnant with our son. I had the opportunity to be included in a study at UCSF for pregnant women on Humira. It was due in part to their initial research that I decided to stay on Humira during the pregnancy and I was happy that I could hopefully help other mom's make the big decision about meds and pregnancy. It was a great opportunity because my doctor got up to the minute breaking research information from the study doctor. We decided to stop the Humira 8 week prior to deliver (your body starts sending all of your anti-bodies to your baby within the last 2 months to help get them ready to defend their own immune system after birth - Humira is one of them). We were able to get our blood (mine and my son's) and his cord blood tested for Humira levels. It turns out that he still got quite a bit of Humira even though I hadn't been on it for 8 weeks.
In June 2010 I gave birth to a beautiful, healthy baby boy. He's actually still in the study (until age 5) and is doing really well - no apparent effects of the Humira.
I then experience Deja Vu after this baby as well. I started the Humira again 2 days after he was born. It never really seemed to get back up to full strength again. I went into another flare after I stopped breastfeeding at 8 months. My GI changed my dose to every 10 days and then eventually every 7 days. Once I got to 7 days I finally started to feel like it was starting to work well again.
But the unfortunate thing was that about 3 months after my son was born I started itching. And didn't stop itching. I feel like I've done everything.... I dealt with it for months, I tried Anti-dandruff shampoo for when my head itched, I went to urgent care many times, tried all kinds of different ointments and creams and meds....nothing seemed to help. I was finally able to get in to see my PCP and she gave me more meds and after they didn't help sent me to a Dermatologist. Quite frankly - I stumped her. She tried many things and consulted with everyone - including the most senior doctors in the office as well as her circle of colleagues and still couldn't figure out what could be causing the intense itching all over my body. She finally made the suggestion (and my GI agreed) that it may be the Humira. I was so frustrated. I love the independence of Humira as opposed to Remicade and didn't want to switch. I was also worried about burning through one of the biologics. I tried to hold out for as long as I could and when I was up all night every night itching I finally relented. I was put on 40 mg of prednisone (evil in a pill!!) and that was the only thing that helped. I tapered after 8 weeks or so and started itching like crazy again. I finally realized that it was time for Remicade.
That gets you up almost to today. I'm scheduled for my 3rd dose of Remicade next Friday. I started to flare pretty bad after stopping the Humira and am now on a 6 week course of Entocort and am feeling almost normal (other than exhaustion). I'm keeping my fingers crossed that the itching will eventually stop (by the way - if you've ever heard of this or have any thoughts or suggestions, I'd love to hear them...I'm so frustrated!!) and that the Remicade will start working soon. It's going to be a feat to figure out what to do with my kids when I get the infusions. I generally won't have anybody that can go with me (my husband is a chef and works nights) and have to take Benydryl - which knocks me out! Such is the life!!
Anyway, that's my Crohnie story. I know it was long - I hope you don't mind. I go through good times and not so good times. Some days, weeks, months its a struggle trying to live with this disease. I'm definitely tried of being sick so often and wish I could just concentrate on my life, kids and husband but as I don't really have a choice I continue to take it day by day.
Thanks for reading! I'm glad to be here. :ybiggrin:
I've been looking around reading the posts for a while now and decided it was finally time to create an account.
I am an (almost) 30 year old mother of two beautiful children. I've been married for 8 1/2 years.
I was finally diagnosed with Crohn's disease after about two straight weeks of hell back in 2003 (more about that in a bit). Now that I know what I have, I have symptoms going back to at least 1992 that could have been Crohn's all along.
I (like so many, I'm sure) was misdiagnosed for years and years. I would get an attack and end up in Urgent Care or in the ER. I was always told the same thing - it's probably a virus - they would give me anti-nausea meds, pain meds and tell me to go home and drink lots of fluid and get lots of rest. I remember on time when I was a junior or senior in high school laying on my parents bathroom floor and sobbing in so much pain. The only time it wasn't a "virus" was when a doctor told me he thought I had a kink in my colon...at least he was creative. :ybiggrin: A year and 1/2 or so before I was diagnosed I got what I know know was a recto-vaginal fistula. I asked my gyno about it and she thought it was a cyst and said not to worry about it. (Sorry to be graphic, but hey - we're all friends around here, right?) but I remember it would drain rectally until at one point it wouldn't anymore. It kept filling with fluid and was incredibly painful. I kept trying to squish it for some relief. And then I experienced one of the most horrifying, painful experiences in my life when it finally broke through to the surface...Awful!
So, back to the diagnosis... It was January 2003 - I was busy in my junior year in college and planning for our wedding in June. I got more sick then I've ever been in my entire life. I couldn't keep any fluids (including water) down for over 2 weeks. I lost so much weight and my wedding dress no longer fit! I was in and out of the ER 3 times before they started running a battery of tests on me (most I wouldn't wish even on my worst enemy). Finally after a CAT scan they said "We think you have Crohn's Disease". What?? I've never heard of that. What?? They sent me home and told me a schedule an appt with a GI and to get a colonoscopy to know for sure. I didn't even make it to the doctor before I made my 4th and final trip to the ER. I was so dehydrated and in misery. They finally realized that my 4 trips to the ER wasn't cutting it and admitted me to the hospital. Thank goodness for my husband. He didn't leave my side, didn't think hesitate to keep bringing me in to the ER and sat beside me every minute he could in the hospital. They scheduled me for my very first (of many) colonoscopy two days later and I had to do the prep in the hospital...with a roommate. At least she was pretty cool and encouraged me to keep drinking but still - what an awful experience. After the colonoscopy I was still coming out of it and they said I most certainly had Crohn's.
Next began my never ending quest for information and understanding as to what life with Crohn's actually meant. I had to drop my classes that term as I had missed so much class at that point. The first GI I started seeing put me on pentasa (16 pills a day?? Seriously?) That went well - or not. I have a hard enough time remembering to take meds 1x a day - let alone 4. My 2nd GI put me on a long term course of prednisone (hell, hell, hell!) After college we moved to Chicago and I had to wait a few months before my health insurance kicked in (all the wile still on prednisone) and then went through another round of "get to know a new GI tests". I was seeing a GI at Northwestern and he was really good. I can't remember what drugs he put me on but I finally got to taper the pred. I actually think I refused to take any meds. I had it mostly under control with diet at that point. Right before we moved out to CA we decided that it was time to start our family and after getting a clean bill of health from my OB we started trying and got pregnant with our daughter practically the minute we decided we wanted a baby. Pregnancy was bliss for me - I was in complete remission. My carefully kept diet went out the window and for the first time in years I could eat peanuts, popcorn, shrimp, anything I wanted.
In April 2006 I gave birth to my beautiful daughter by c-section (due to the fistula). She was perfect!! I had a slight flare after she was born and went into a full blown flare after I stopped breastfeeding her at 10 months.
I finally realized that it was time to get established with another GI. My GI put me back on Pentasa (Ugh!). I kept asking about my fistula because it was torture. He finally relented and said that he would maybe consider a biologic, but that he wasn't sure it would help. He suggested that I see another doctor (only a short 50 miles away) that had a clinical interest/specialization with IBD for a consultation to see if she recommended Remicade - but I would come back to him after seeing her.
I saw her and my life changed. She did a full history and exam in the exam room and then brought me back to her office to talk. She was the first doctor that I could really understand. She talked to me a lot about why I was experiencing the things, current research, treatments, etc. It was amazing. Then she said probably one of the greatest things I've ever heard from a doctor (other than "it's a girl" and "it's a boy") - "You can keep coming to see me if you'd like". She was so far away but has truly changed my life. She is incredible. She does as much as she can over email. She lets me schedule labs wherever and tests as close to home as I can. She is always up to date on the current info.
Anyway, she recommended Humira and she told me something that I will always remember. She said "You don't know what healthy is". You've been living your life and think this is normal, but with the right meds, I think you'll finally know what healthy really is."
She also ordered some blood work - including the test for Crohn's markers. When we got the results back, I was positive for 3 out of 4 and two of those were double positive. It was then after she went over those results with me that I realized that it wasn't something that I could just control with diet. I started Humira shortly after and man - was that life changing. She was right - I finally had a glimpse into what healthy was. I spent 2 1/2 years on Humira.
In 2009 we decided that it was time to expand our family and after lots of discussions and consultations we finally made the decision to move forward trying to get pregnant while staying on Humira. Shortly after starting to try we got pregnant with our son. I had the opportunity to be included in a study at UCSF for pregnant women on Humira. It was due in part to their initial research that I decided to stay on Humira during the pregnancy and I was happy that I could hopefully help other mom's make the big decision about meds and pregnancy. It was a great opportunity because my doctor got up to the minute breaking research information from the study doctor. We decided to stop the Humira 8 week prior to deliver (your body starts sending all of your anti-bodies to your baby within the last 2 months to help get them ready to defend their own immune system after birth - Humira is one of them). We were able to get our blood (mine and my son's) and his cord blood tested for Humira levels. It turns out that he still got quite a bit of Humira even though I hadn't been on it for 8 weeks.
In June 2010 I gave birth to a beautiful, healthy baby boy. He's actually still in the study (until age 5) and is doing really well - no apparent effects of the Humira.
I then experience Deja Vu after this baby as well. I started the Humira again 2 days after he was born. It never really seemed to get back up to full strength again. I went into another flare after I stopped breastfeeding at 8 months. My GI changed my dose to every 10 days and then eventually every 7 days. Once I got to 7 days I finally started to feel like it was starting to work well again.
But the unfortunate thing was that about 3 months after my son was born I started itching. And didn't stop itching. I feel like I've done everything.... I dealt with it for months, I tried Anti-dandruff shampoo for when my head itched, I went to urgent care many times, tried all kinds of different ointments and creams and meds....nothing seemed to help. I was finally able to get in to see my PCP and she gave me more meds and after they didn't help sent me to a Dermatologist. Quite frankly - I stumped her. She tried many things and consulted with everyone - including the most senior doctors in the office as well as her circle of colleagues and still couldn't figure out what could be causing the intense itching all over my body. She finally made the suggestion (and my GI agreed) that it may be the Humira. I was so frustrated. I love the independence of Humira as opposed to Remicade and didn't want to switch. I was also worried about burning through one of the biologics. I tried to hold out for as long as I could and when I was up all night every night itching I finally relented. I was put on 40 mg of prednisone (evil in a pill!!) and that was the only thing that helped. I tapered after 8 weeks or so and started itching like crazy again. I finally realized that it was time for Remicade.
That gets you up almost to today. I'm scheduled for my 3rd dose of Remicade next Friday. I started to flare pretty bad after stopping the Humira and am now on a 6 week course of Entocort and am feeling almost normal (other than exhaustion). I'm keeping my fingers crossed that the itching will eventually stop (by the way - if you've ever heard of this or have any thoughts or suggestions, I'd love to hear them...I'm so frustrated!!) and that the Remicade will start working soon. It's going to be a feat to figure out what to do with my kids when I get the infusions. I generally won't have anybody that can go with me (my husband is a chef and works nights) and have to take Benydryl - which knocks me out! Such is the life!!
Anyway, that's my Crohnie story. I know it was long - I hope you don't mind. I go through good times and not so good times. Some days, weeks, months its a struggle trying to live with this disease. I'm definitely tried of being sick so often and wish I could just concentrate on my life, kids and husband but as I don't really have a choice I continue to take it day by day.
Thanks for reading! I'm glad to be here. :ybiggrin:
