IBD is challenging for those who must manage the disease and related conditions every single day. Family members of those caring for a loved one with irritable Bowel Disease like Crohn’s disease or Ulcerative Colitis often means watching your loved one in pain, missing out on events, and providing lots of emotional support.
We previously shared the experiences of one of our team members, Carinne, who wrote about living with Crohn’s disease. We spoke to Carinne’s mom and husband to hear more about the other side: caring for someone struggling with these conditions.
Carinne’s mom, Pam Yano, said the hardest part for her is watching her daughter go through something she cannot fix.
“There are no words to explain the emotions one goes through as they watch their daughter battle such a horrific disease. Sitting next to my daughter’s hospital bed, seeing the doctor’s baffled look, and the nurse’s confusion, as you tell them the medication is not addressing the symptoms, knowing we are going into unknown territory (again), is difficult. All the while knowing that your duty as mom is to take away the pain and make all of the bad things go away — but this is one monster you cannot scare from under the bed.”
Pam said providing emotional support has been her most essential role, but most of the time, Carinne is stronger about it all.
“My daughter has always been an overachiever and always put her all into everything she has done. Her battle with Crohn’s has been no different. She is strong and courageous and fights Crohn’s head-on. She inspires me every single day.”
Take care of your loved one. Those with IBD and related conditions must monitor their food intake with a diary, be aware of food triggers, and keep up with medical appointments. You can help manage their care by helping them eat right and reducing stress levels.
Carinne was diagnosed a year before her wedding. Her husband, Chad, said most days are “normal,” but “some are heartbreaking and just downright awful.”
Be patient, even when you don’t feel it. These conditions often interrupt life. It can be hard to accept that these conditions will suspend plans. Though Chad says that doesn’t bother him too much.
“The worst part is not the canceled vacations, the long hospital stays, the reality that we will probably never have biological children. Instead, it is the feeling I get knowing there is NOT a thing I can do for her other than stay positive and continue to be her biggest support team. If I could take her place, even for a short period of time, I would do it without blinking an eye.”
Take care of yourself. According to a study in the Annals of Gastroenterology, 44 percent of IBD caregivers surveyed felt overburdened and noted a decline in their quality of life. Remember to seek help if you need it; you can’t take care of your loved one if you are sick physically or emotionally. Seek out support through caregivers' groups. It’s easy to feel despair at an unchangeable situation.
“Over the years as we have been in and out of many hospitals, been apart for several weeks, losing hope and faith at times,” Chad said. “I have learned the real meaning of ‘never take things for granted.’ Each day you wake up is a different battle, you learn to deal with the bad and hang on to the good with all you have.”
Maintain hope. With no cures, helping your loved one manage the condition is all you can do. While of course, you’ll feel a range of emotions about it throughout life — just as your loved one does as he/she battles — maintaining hope and positivity is one of your most critical jobs.
“There is nothing that could have prepared me for the days of seeing my beautiful daughter laying in the hospital for months on end,” said Pam. “But for me, I guess I am lucky, my daughter is strong and is an inspiration for all of us. I think in the dark of the night, it has been her, holding my hand while she was laying in the hospital bed letting me know, it’s OK. We will beat this. We can only take one day at a time, and we know and have seen that they are always finding new hope in the medications that are available. And that day may be tomorrow.”