Molly was diagnosed with Lyme Disease and put on 1500 mgs of amoxicillin a day for SIX weeks at age 14... too much and no one back then told us to give her probiotics at same time so it wiped out the gut flora and all the bad bacteria took over. The diarrhea started and didn't stop - then turned to blood within 6 months and she really didn't share with me until she saw the blood
A colonoscopy showed Crohn's and blood work said same. She's been on so many meds over 4 years. Asacol cause her to lose her hair her first year of high school along with prednisone as well that blew up her face
She was a cheerleader and no matter how many hospital visits to hydrate her and for prednisone IV's to stop bleeding she managed to compete in everything - very strong person! So finally one day they said she would need to have colon removed or try Remicade. We did that and it worked...for 2 weeks only.
Then they tried again and again and finally Humira. She was on Humira up until this past October 2nd - last dose. She started developing symptoms of MS and Humira CAN CAUSE that so she was told to stop it and she's under a lot of stress in her first year of college. She's going to a local school as she didn't want to go away to school with all the meds and so many doc visits and a very STRICT diet. She's allergic to EVERYTHING! So many things trigger attacks for her of diarrhea so she basically can eat turkey (no chicken or eggs), beef, only green beans (all other veggies aggravate her...) and not much else! Bagels and gluten free waffles for breakfast seem ok. It's very hard. No dairy AT ALL as well. We are seeing a doc this Friday to look into a medication called low dose naltrexone that I hear works great for Crohn's and MS so if she has the beginning stages of MS it will stop the progression, work on her depression and help control Crohn's since she exhausted all other meds for Crohn's at this point. I feel so bad for her as her mom but she's strong and beautiful beyond words. No one would know she has this disease. She finally put weight on and looks thin but so healthy - could be a model
Crohn's beat her down quite a bit but she's trying to get some self esteem back and hope that when she meets a boy that he will understand all the complications of her disease. Stress from studying for college exams isn't good so she's thinking of taking a semester off to feel better. That's a reader's digest version of what my daughter's gone through. She said she'd rather die than have an ostomy bag - don't blame her for feeling that way but oddly enough she's doing really well on just medicinal strength probiotics and watching diet - very carefully. I'm wondering if Humira made her worse... it does say can cause gastointestinal upset! Meanwhile they give it for Crohn's. This is a cruel disease and praying stem cells is the answer someday very soon. I know too many kids with this (and adults) ... Thx for listening.
Hope everyone has a good day and no symptoms from this disease! We must find a cure!