Community Forum

My mom was diagnosed with ulcerative colitis at age 43 in October 2015. Around that time I was 23, just graduated college and passed my CPA exams.  I moved to NYC to start my career in public accounting. 

My mom's case was severe, she was a single parent without health insurance and always put her kids first (I am the oldest of 3, with two brothers who are now 21 and 9). As a result, by the time she sought treatment and was diagnosed, her colon was so far gone that we didn't have a shot with humira or remicade. By November 2015 the pain was so severe my mom's body could no longer handle the strain of working in the food industry and she had to quit. 

In February 2016 she started the first of her three surgeries for the end result being a proctocectomy with ileal pouch-anal anastomosis. She conquered her final procedure in December 2016 and we thought we were in the clear...finally the road to recovery!

Unfortunately we were wrong. In addition to the extreme emotional and mental changes I have seen in her,  she has had severe complications with her eyes and lungs that came to fruition relatively quickly post operation. Her cough is so severe that she has fractured her ribs twice now. It's sad and scary that at age 45 she can't walk more than a block without being out of breath. To all of this the doctors have been unable to definitively conclude on a treatment and simply attribute it to her "UC and auto immune disease". 

To make matters worse my mom is a financial mess. She was granted disability in April 2017, but before that went without pay since November 2015. Her current situation is not sustainable to cover her rent and provide for my 9 year old brother, etc.

I feel like I'm at a dead end. I travel home from NYC as often as I can and financially provide as much as a 25 year old's salary can, but it's not enough. 

Caregivers, how do you stay in the loop on your loved ones treatments/care/doctor visits etc if you are unable to be there live? 

Does anyone have a loved one experiencing similar complications to my mom? If so, what is their medical routine? My mom sees a therapist, rheumatologist, ophthalmologist, PCP...I just feel like we are 8 months post surgery and have made progress in some ways, and 10 steps back in others.

Does anyone have any financial resources for the disabled or struggling IBD patients? 

Should I just move back home? 

Will I ever get my mom back? 

Reply posted for Bms5405.

I am new to this site, but I wanted to suggest possibly applying for any assistance to help pay for any medications your mom is taking. So many of the drugs are so expensive it's insane. For example, I take remicade and applied to the Jansen care path program. Most companies seem to offer something similar. They can be annoying (paperwork, follow up phone calls, etc.) but when they help pay, it's so worth it. I hope this helps in some small way. Best of luck to you and your family!

Reply posted for administrator.

BMs5405
 
It can get better.   Inflammatory bowel disease (IBD) can be challenging but it can be managed through maintenance therapy (medication), a healthy and well balanced diet and maintaining a healthy lifestyle. It is important to remember that IBD is a chronic disease (life-long), and the medications can help with decreasing the symptoms. However an individual may still experience occasional symptoms.
 
We are sorry to read about the health and financial challenges that your mom is experiencing.   We hope your mom is doing better since you posted this message last fall.
 
There are resources available.   Since she has social security disability income she would be eligible for health insurance.  Since your mom has disability income your little brother can get resources through social security because his mom is disabled.
She may also qualify for programs such as Temporary Assistance for Needy Families (TANF), housing subsidies, food stamps and energy assistance programs.    
If you were to move back home, your income may be counted as “household” income and can possibly reduce your mother’s eligibility for financial assistance.    Don’t go it alone contact local programs in your mother’s community such as United Way, Catholic Charities and Jewish Family Services.   
 
Contact the Help Center if you would like more information on resources at info@crohnscolitisFoundation.org