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17 yo with non-responding proctitis

Thu, June 03, 2021 12:31 PM

My 17 yo daughter was diagnosed with UC proctitis in 8/20. As of yet we have not yet been able to control it. She has been on tons of different oral and rectal meds. Orals do not seem to do much and when she stops the rectals, the bleeding and mucus starts back within about 2 weeks.  Does anyone have experience with this - both with a 17 yo who straddles pediatric/adult and with treatment for proctitis? Thanks

FPO dianeschiff1110
Joined Jun 3, 2021

Thu, June 17, 2021 11:41 AM

Reply posted for dianeschiff1110.

I wish you to cope with your daughter's illness! Good luck smiley

FPO MichelleEdmunds
Joined Jun 17, 2021

Sun, June 06, 2021 2:31 AM

Reply posted for kbears.

When your daughter is 18, she should have the option to transition to an adult doctor, but this depends on your health insurance. If you feel like with all of the treatments so far aren't working, you have the option to ask for a second opinion from another GI doctor. They can look through your daughter's medical records as requested and try to find a better solution. You can also request for a copy of her medical records if you really want to know the case for your daughter's condition. These are included in the Patient Bill of Rights each hospital has. If you don't like the direction of the treatment at all or if the doctor isn't listening to your concerns, then I recommend switching to a different doctor. Going through the process of getting treatment after being diagnosed is difficult. I stayed with my pediatric GI doctor until I was 19, since I had numerous flareups that needed to be taken care of. It's definitely a struggle for both the patient and the caregiver in getting answers and in finding a treatment that works. You and your daughter are not alone. Keep going to your daughter's doctor's appointments and advocate on her behalf if needed. Keep asking questions and hopefully receive those answers for more effective treatment. Treatments for IBD are horrible. Practice self-care or seek help from a professional if all of this is hard on your mental health. Much love! 

FPO kbears
Joined Jul 11, 2021

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