Hi All
I am so sorry and scared in reading so many of your posts and you are all my heroes and heroines.
I'm the mom of it'smebabs who is an adult and she is my only child (and family) dealing with Crohn's almost all her life. She's tried and been on everything except the biologics because she has 2 precursors to forms of lymphomas and cancer already but now GI wants her to go on Entyvio which we both are terrified.Her insurance company hasn't approved yet either and her insurance is changing and this doctor won't be on her plan but another doctor in his office may be. The office didn't even realize this until she notified them. Insurance has gotten so bad and confusing here in NY. She's now drinking Peptamen 1.5 and dilutes it with water but still is losing weight.She still has diarrhea at least 4-5 times a day but at least now it has gone from yellow, green and now chocolate syrup....sorry for being so descriptive. She can't eat anything for the last 6 weeks and started Peptamen maybe 2-3 weeks ago.
When the GI did a colonoscopy he could only get to her anastomoses (sp) (coliocolic resection 3 years ago) whereby 40% narrowed and full of ulcers so he couldn't complete it. We are now so confused and scared and don't know what to do. Peptamen tolerated but can't drink enough to maintain a weight. The intense pain subsided but now she is experiencing pinching and tightness in the area and in her back. Can this be due to adhesion, scar tissue, stricture or what??? We are at a loss since her surgery everything is so different. She can't do any form of prednisone since bad case of osteoporosis that hopefully she can address after this flare if it ever goes away.Should she ask for a CT scan even though she was allergic to the dye years ago? We both are so scared that she's run out of options and this is her new life and believe me there's no quality. I don't know if her boyfriend ( he doesn't want her children if they marry for fear of the kids getting Crohn's too) will stick around and it's been more then difficult for her to start her own business. We are both running out of money since she's also tried Functional medicine doctors and organic foods, SCD, Paleo diet etc. Also went to GI's who don't take insurance (So much money has been out of pocket and high deductibles and copays)so now our hope is running thin like our money. Any suggestions would be greatly appreciated. I truly mean that and thank you for being there to read this. My heart is breaking watching her and for the first time feeling so helpless. I apologize in advance if I come across as babbling but all of you are my last hope.
Thank you so much in advance.
I pray for you all and send healing hugs!:
I am so sorry and scared in reading so many of your posts and you are all my heroes and heroines.
I'm the mom of it'smebabs who is an adult and she is my only child (and family) dealing with Crohn's almost all her life. She's tried and been on everything except the biologics because she has 2 precursors to forms of lymphomas and cancer already but now GI wants her to go on Entyvio which we both are terrified.Her insurance company hasn't approved yet either and her insurance is changing and this doctor won't be on her plan but another doctor in his office may be. The office didn't even realize this until she notified them. Insurance has gotten so bad and confusing here in NY. She's now drinking Peptamen 1.5 and dilutes it with water but still is losing weight.She still has diarrhea at least 4-5 times a day but at least now it has gone from yellow, green and now chocolate syrup....sorry for being so descriptive. She can't eat anything for the last 6 weeks and started Peptamen maybe 2-3 weeks ago.
When the GI did a colonoscopy he could only get to her anastomoses (sp) (coliocolic resection 3 years ago) whereby 40% narrowed and full of ulcers so he couldn't complete it. We are now so confused and scared and don't know what to do. Peptamen tolerated but can't drink enough to maintain a weight. The intense pain subsided but now she is experiencing pinching and tightness in the area and in her back. Can this be due to adhesion, scar tissue, stricture or what??? We are at a loss since her surgery everything is so different. She can't do any form of prednisone since bad case of osteoporosis that hopefully she can address after this flare if it ever goes away.Should she ask for a CT scan even though she was allergic to the dye years ago? We both are so scared that she's run out of options and this is her new life and believe me there's no quality. I don't know if her boyfriend ( he doesn't want her children if they marry for fear of the kids getting Crohn's too) will stick around and it's been more then difficult for her to start her own business. We are both running out of money since she's also tried Functional medicine doctors and organic foods, SCD, Paleo diet etc. Also went to GI's who don't take insurance (So much money has been out of pocket and high deductibles and copays)so now our hope is running thin like our money. Any suggestions would be greatly appreciated. I truly mean that and thank you for being there to read this. My heart is breaking watching her and for the first time feeling so helpless. I apologize in advance if I come across as babbling but all of you are my last hope.
Thank you so much in advance.
I pray for you all and send healing hugs!: