Molly was diagnosed at 14 with Lyme Disease and put on an enormous amount of antibiotics 1500mg amoxicillin/day for SIX (6) weeks! She didn't tell me that it was causing diarrhea and for months after through summer of 2006. In December 2006 Molly called me terrified from a friend's house that she pooped and the bowl was full of blood! I picked her up and called the doc. They said to bring her to the ER. Christmas was just days away. Well she was admitted and borderline for a blood transfusion because this had been going on longer than she told me - at age 14 and just starting high school it wasn't something I guess she felt easy to tell me. She told her docs she had been having diarrhea since previous MAY 2006 - almost 8 months! I had been bringing her for follow up visits for the Lyme Disease and she was fine but she wasn't looking well ... losing weight - all concerns of mine but the doc said she was fine. She was NOT FINE. A colonoscopy on December 25th 2006 dx'd Crohn's for her...
We refused to believe it - had no idea what this word Crohn's even was! Where did this come from and why? No on in our family had it ... we started the natural route and everyone was in agreement that the antibiotics induced Crohn's... we didn't know that anytime on an antibiotic one should be taking heavy doses of probiotics and then for 2 months AFTER you finish the antibiotics as well. Apparently the iron her doc gave her for anemia caused the bleeding. Molly's colon doesn't tolerate oral iron so she gets iron infusions (through IV) and this helps tremendously.
Molly was put on prednisone and discharged on Christmas Eve. She felt ok - no pain but scared. Little did we know what was ahead. She blew up and got so puffy from the prednisone - mind you this is her first year of high school - and she's a beautiful girl so the prednisone distorted her face terribly and she was made fun of and couldn't explain to anyone why she was puffy because it had to do with pooping Couldn't say ASTHMA or something people were aware of. Anyway - she was put on Asacol and lost at least 50% of her hair - we got her extensions to thicken it up - tried to wean off prednisone 100x but it took a year and a half to get her off of it without flaring back up. In October 2007 Molly was in the worst flare and they gave us a choice....Remicade or lose the colon! We didn't want her to have the medicine with all the side effects that could happen but gave in to save her colon. She failed the Remicade - it worked for 2 weeks then stopped working. Tried again and it lasted 2 weeks. It's supposed to last 4-8 weeks depending on the person but she obviously wasn't doing well. Back to 60 mgs of prednisone and now over a year later she had bone loss from the prednisone on a scan.
Molly had some food allergy/sensitivity testing done and it showed she could not eat eggs, dairy, most veggies or chicken - nothing with vinegar. No sugar. We started acupuncture and that seemed to help but the NAET acupuncture for food allergies didn't help as much as we hoped. She still had bleeding and flares if she ate anything on the 'no-no list'... no cheating ever. If she cheated - she bled.
So finally a new doc in NYC put her on Humira injectios bi-weekly then went to weekly. First time in 2 years she was in remission - YAY! But then a year later she had a flare and colonoscopy and the doc said time to discuss a permanent ostomy for my little girl. She missed out on all her teen years... managed to be a cheerleader for 2 of her high school years and would get out of the hospital and compete and let them throw her in the air but she was never 'like the other girls'... and oh so pretty. I felt so bad as her mom that I couldn't kiss her boo boo and make it go away try as I did - doctor to doctor - racking up 14,000 dollars in medical bills that insurance DIDN'T cover... oy this was rough.
So here we are - she's not doing well on Humira as she is still having pain and diarrhea along with symptoms of MS which is a side effect of Humira - central nervous system disorders. UGH! Her last dose of Humira was Oct 2nd 2010. Today is October 27th 2010 and after her class (she's in local community college now) we will be going for more tests for MS but thankfully the neurologist is hopeful the blindness she experienced 2 weeks ago and migraines were all due to hormones and nothing more. The MRI shows some things of concern but not definitive enough to say MS so we are hopeful. She's a trooper and a stubborn one at that! But being stubborn with this disease is important - she won't let it stop her from having a life and boyfriends and such. She just has to eat a lot of turkey lol....all she can have mostly and bagels and green beans and even beef doesn't bother her but chicken would put her in the hospital. Every 'body' is so different.
I am hopeful and trying to keep her going but now she's trying to be more independent and I feel so lost. I want to help her... I made an appt. with a doc here on Long Island who prescribes LDN (low dose naltrexone) and MANY fellow Crohnies that I've met are on it and there are no side effects - they are living normal lives and the inflammation is gone in their colons so we go Friday the 29th this week and hope to get that medication to keep her protected.
I hope this all makes sense. I'm so tired and frustrated for her. I love her to pieces and keep asking God to give it to me and take away from her! Since off Humira she's had NO CROHN'S SYMPTOMS for first time in years... which we are all asking WHY? I did read Humira can cause gastrointestinal upset - great! NO wonder it didn't work as well as we thought. Oh she also takes medicinal strength probiotics 2x a day - LactoViden and BifoViden and after 3 months of taking religiously I think her 'flora' is more stable now. Last blood work was amazing and showed remission so keeping fingers and toes crossed and praying a lot.
Hoping LDN is a good alternative since we've exhausted most medicines at this point and an ostomy is not an option for her. She says she'd rather die then live with a bag - she's only 18. I can understand her feeling that way. Let's hope it never comes to that decision ever again.
My hope is stem cells will be the answer and soon
Good luck and God bless you all - parents, caretakers and anyone with this awful disease. I know way too many people suffering from Crohn's - we must make the public more aware of this disease and we must find a cure!!!
We refused to believe it - had no idea what this word Crohn's even was! Where did this come from and why? No on in our family had it ... we started the natural route and everyone was in agreement that the antibiotics induced Crohn's... we didn't know that anytime on an antibiotic one should be taking heavy doses of probiotics and then for 2 months AFTER you finish the antibiotics as well. Apparently the iron her doc gave her for anemia caused the bleeding. Molly's colon doesn't tolerate oral iron so she gets iron infusions (through IV) and this helps tremendously.
Molly was put on prednisone and discharged on Christmas Eve. She felt ok - no pain but scared. Little did we know what was ahead. She blew up and got so puffy from the prednisone - mind you this is her first year of high school - and she's a beautiful girl so the prednisone distorted her face terribly and she was made fun of and couldn't explain to anyone why she was puffy because it had to do with pooping Couldn't say ASTHMA or something people were aware of. Anyway - she was put on Asacol and lost at least 50% of her hair - we got her extensions to thicken it up - tried to wean off prednisone 100x but it took a year and a half to get her off of it without flaring back up. In October 2007 Molly was in the worst flare and they gave us a choice....Remicade or lose the colon! We didn't want her to have the medicine with all the side effects that could happen but gave in to save her colon. She failed the Remicade - it worked for 2 weeks then stopped working. Tried again and it lasted 2 weeks. It's supposed to last 4-8 weeks depending on the person but she obviously wasn't doing well. Back to 60 mgs of prednisone and now over a year later she had bone loss from the prednisone on a scan.
Molly had some food allergy/sensitivity testing done and it showed she could not eat eggs, dairy, most veggies or chicken - nothing with vinegar. No sugar. We started acupuncture and that seemed to help but the NAET acupuncture for food allergies didn't help as much as we hoped. She still had bleeding and flares if she ate anything on the 'no-no list'... no cheating ever. If she cheated - she bled.
So finally a new doc in NYC put her on Humira injectios bi-weekly then went to weekly. First time in 2 years she was in remission - YAY! But then a year later she had a flare and colonoscopy and the doc said time to discuss a permanent ostomy for my little girl. She missed out on all her teen years... managed to be a cheerleader for 2 of her high school years and would get out of the hospital and compete and let them throw her in the air but she was never 'like the other girls'... and oh so pretty. I felt so bad as her mom that I couldn't kiss her boo boo and make it go away try as I did - doctor to doctor - racking up 14,000 dollars in medical bills that insurance DIDN'T cover... oy this was rough.
So here we are - she's not doing well on Humira as she is still having pain and diarrhea along with symptoms of MS which is a side effect of Humira - central nervous system disorders. UGH! Her last dose of Humira was Oct 2nd 2010. Today is October 27th 2010 and after her class (she's in local community college now) we will be going for more tests for MS but thankfully the neurologist is hopeful the blindness she experienced 2 weeks ago and migraines were all due to hormones and nothing more. The MRI shows some things of concern but not definitive enough to say MS so we are hopeful. She's a trooper and a stubborn one at that! But being stubborn with this disease is important - she won't let it stop her from having a life and boyfriends and such. She just has to eat a lot of turkey lol....all she can have mostly and bagels and green beans and even beef doesn't bother her but chicken would put her in the hospital. Every 'body' is so different.
I am hopeful and trying to keep her going but now she's trying to be more independent and I feel so lost. I want to help her... I made an appt. with a doc here on Long Island who prescribes LDN (low dose naltrexone) and MANY fellow Crohnies that I've met are on it and there are no side effects - they are living normal lives and the inflammation is gone in their colons so we go Friday the 29th this week and hope to get that medication to keep her protected.
I hope this all makes sense. I'm so tired and frustrated for her. I love her to pieces and keep asking God to give it to me and take away from her! Since off Humira she's had NO CROHN'S SYMPTOMS for first time in years... which we are all asking WHY? I did read Humira can cause gastrointestinal upset - great! NO wonder it didn't work as well as we thought. Oh she also takes medicinal strength probiotics 2x a day - LactoViden and BifoViden and after 3 months of taking religiously I think her 'flora' is more stable now. Last blood work was amazing and showed remission so keeping fingers and toes crossed and praying a lot.
Hoping LDN is a good alternative since we've exhausted most medicines at this point and an ostomy is not an option for her. She says she'd rather die then live with a bag - she's only 18. I can understand her feeling that way. Let's hope it never comes to that decision ever again.
My hope is stem cells will be the answer and soon
Good luck and God bless you all - parents, caretakers and anyone with this awful disease. I know way too many people suffering from Crohn's - we must make the public more aware of this disease and we must find a cure!!!