Hi Everyone,
Happy New Year
I am 34 years old, and was diagnosed with Crohn's Disease approximately 12 years ago. While this disease has definitely taken its toll, I consider myself extremely blessed. I have an incredible husband, wonderful family and friends, and a great job.
It's comforting to know that there are sites out there like this one. While I joined this forum to connect with others suffering from Crohn's Disease, I am also looking to express my frustration over the countless doctors I've seen, as well as the countless medications I've taken. I'm hoping that some people can relate. I'll try and make my LONG story as short as I can.
Unlike countless others who have been in and out of hospitals due to this disease, I have been lucky to have only had three major flair ups in the past 12 years that resulted in hospitalization (knock on wood). With that said, I definitely have several days where I feel awful. The stomach pains, constant fatigue, and other complications I've experienced over the years, have definitely caused a great deal of turmoil.
I was initially diagnosed with Crohn's Ileitis in 1998. The Crohn's now presents itself in my large intestine. Additionally, as a result of the Crohn's, for the past year, I have been suffering from Iritis in my right eye. Some other problems I continue to experience as a result of the disease and medication are thinning of the hair, short term memory problems, trouble focusing and paying attention, and the most debilitating of them all, frequency of urination.
Over the years, I have taken several different medications and experienced major side effects from many of them. While my gastroenterologists have excellent reputations, they did not validate my concerns over the side effects I continue to experience. The following list is the meds I have been on.
1. Pentasa and Azathioprine: I started these two meds approximately 10+ years ago. I noticed that my hair began thinning and I began experiencing pressure on my bladder that caused frequent urination. While the meds worked to treat my crohn's for a while, when I experienced a flair up, my doctors placed me on Remicade.
2. Remicade: I had infusions of Remicade for about two years. My hair continued to get thinner and thinner. The bladder problems improved as I started taking bladder medication. About a year into taking Remicade, I began having muscle spasms all over my body. My doctors attributed it to anxiety and stress, having just experienced a few deaths in my family. Additionally, I started experiencing short term memory loss, as well as trouble forming sentences and retrieving information. When I experienced a flair up two years into the Remicade, I insisted that I change medications. While in the hospital, doctors ruled out any neurological problems, and when I insisted I go off the Remicade, the muscle spasms ceased (clearly the doctors were wrong...again). To this day, however, my attentional problems and lack of focus remain.
3. Humira: I gave myself injections twice monthly. After several months, chunks of my hair started falling out. The doctors said it wasn't the Humira but I did not believe them. My hair began growing back a few months after ending the medication; however, it is still extremely thin and damaged.
4. Pentasa: I went back on Pentasa about three years ago once the issues with my hair starting getting worse. Since then, my bladder problems started recurring. The medications to treat my bladder weren't working anymore, and neither were the many others that I've tried. Various urologists ruled out anything serious. They just attributed it to my Crohn's. I began taking sleeping meds to prevent me from getting up to use the bathroom a dozen times throughout the night.
5. When I developed Iritis last year, my opthamologist placed me back on azathioprine. As of two weeks ago, I was taking 50 mg of azathioprine and 8 capsules daily of pentasa.
That brings us to today! I am approaching 35 and am hoping to get pregnant. Because research reveals that people on azathioprine should abstain from getting pregnant, my doctors, who said it would be okay to get pregnant, suggested that I see a high risk OB (he gave me the "okay" to start trying). A few hours after seeing the OB, however, he called me to tell me that he researched pentasa, and many sites revealed that 2-3% of people taking pentasa, experience frequency of urination. I called both of my gastros who said they've never heard of that side effect before, yet my OB who didn't know me, found the results in five minutes! Regardless, they said I could stop the pentasa and see what happens (it's only been two weeks since I've stopped and unfortunately, I'm still having the bladder problems). Ironically, once I stopped the pentasa, my iritis began flairing up...I am now only currently on 100mg of azathioprine...
Please forgive me for my LENTHY story (and for allowing me to vent). Has anyone ever experienced any of this before, especially the bladder problems? Many people are successful on the meds that I've been on so if you're just starting out on any of those, my side effects were not meant to scare you. It's possible that my body and medication simply don't mix! Anyway, thank you so much for reading my post, and for any feedback you may have. I really appreciate it
Throughout it all, I still have faith
Happy New Year
I am 34 years old, and was diagnosed with Crohn's Disease approximately 12 years ago. While this disease has definitely taken its toll, I consider myself extremely blessed. I have an incredible husband, wonderful family and friends, and a great job.
It's comforting to know that there are sites out there like this one. While I joined this forum to connect with others suffering from Crohn's Disease, I am also looking to express my frustration over the countless doctors I've seen, as well as the countless medications I've taken. I'm hoping that some people can relate. I'll try and make my LONG story as short as I can.
Unlike countless others who have been in and out of hospitals due to this disease, I have been lucky to have only had three major flair ups in the past 12 years that resulted in hospitalization (knock on wood). With that said, I definitely have several days where I feel awful. The stomach pains, constant fatigue, and other complications I've experienced over the years, have definitely caused a great deal of turmoil.
I was initially diagnosed with Crohn's Ileitis in 1998. The Crohn's now presents itself in my large intestine. Additionally, as a result of the Crohn's, for the past year, I have been suffering from Iritis in my right eye. Some other problems I continue to experience as a result of the disease and medication are thinning of the hair, short term memory problems, trouble focusing and paying attention, and the most debilitating of them all, frequency of urination.
Over the years, I have taken several different medications and experienced major side effects from many of them. While my gastroenterologists have excellent reputations, they did not validate my concerns over the side effects I continue to experience. The following list is the meds I have been on.
1. Pentasa and Azathioprine: I started these two meds approximately 10+ years ago. I noticed that my hair began thinning and I began experiencing pressure on my bladder that caused frequent urination. While the meds worked to treat my crohn's for a while, when I experienced a flair up, my doctors placed me on Remicade.
2. Remicade: I had infusions of Remicade for about two years. My hair continued to get thinner and thinner. The bladder problems improved as I started taking bladder medication. About a year into taking Remicade, I began having muscle spasms all over my body. My doctors attributed it to anxiety and stress, having just experienced a few deaths in my family. Additionally, I started experiencing short term memory loss, as well as trouble forming sentences and retrieving information. When I experienced a flair up two years into the Remicade, I insisted that I change medications. While in the hospital, doctors ruled out any neurological problems, and when I insisted I go off the Remicade, the muscle spasms ceased (clearly the doctors were wrong...again). To this day, however, my attentional problems and lack of focus remain.
3. Humira: I gave myself injections twice monthly. After several months, chunks of my hair started falling out. The doctors said it wasn't the Humira but I did not believe them. My hair began growing back a few months after ending the medication; however, it is still extremely thin and damaged.
4. Pentasa: I went back on Pentasa about three years ago once the issues with my hair starting getting worse. Since then, my bladder problems started recurring. The medications to treat my bladder weren't working anymore, and neither were the many others that I've tried. Various urologists ruled out anything serious. They just attributed it to my Crohn's. I began taking sleeping meds to prevent me from getting up to use the bathroom a dozen times throughout the night.
5. When I developed Iritis last year, my opthamologist placed me back on azathioprine. As of two weeks ago, I was taking 50 mg of azathioprine and 8 capsules daily of pentasa.
That brings us to today! I am approaching 35 and am hoping to get pregnant. Because research reveals that people on azathioprine should abstain from getting pregnant, my doctors, who said it would be okay to get pregnant, suggested that I see a high risk OB (he gave me the "okay" to start trying). A few hours after seeing the OB, however, he called me to tell me that he researched pentasa, and many sites revealed that 2-3% of people taking pentasa, experience frequency of urination. I called both of my gastros who said they've never heard of that side effect before, yet my OB who didn't know me, found the results in five minutes! Regardless, they said I could stop the pentasa and see what happens (it's only been two weeks since I've stopped and unfortunately, I'm still having the bladder problems). Ironically, once I stopped the pentasa, my iritis began flairing up...I am now only currently on 100mg of azathioprine...
Please forgive me for my LENTHY story (and for allowing me to vent). Has anyone ever experienced any of this before, especially the bladder problems? Many people are successful on the meds that I've been on so if you're just starting out on any of those, my side effects were not meant to scare you. It's possible that my body and medication simply don't mix! Anyway, thank you so much for reading my post, and for any feedback you may have. I really appreciate it
Throughout it all, I still have faith
