IBD Patients and Caregivers Have Strong Emotions

I want to talk about the two most powerful emotions that I believe go alongside a life with Crohn’s Disease or Ulcerative Colitis. As most of you already know, inflammatory bowel disease is a family disease. Most chronic illnesses are which makes them that much harder to live with.

Everything that happens to patients impacts the lives of the people whom they are closest to and presumably feel the most love for. The people who feel the brunt of the emotional issues that come with IBD are usually family members or close friends. It is just the way things are and it is only natural to take your frustrations out on those you know will love you and be there for you unconditionally.

People who suffer from Crohn’s Disease or Ulcerative Colitis are incredibly lucky if they have strong caregivers and people by their side. This disease can cause you to feel so vulnerable and have a huge need to withdraw from the world because you can’t bare to share some of the details to most other people.

For me personally, I feel an enormous amount of gratitude to my parents. I was diagnosed with ulcerative colitis at the age of 13 and was immediately put on mega doses of prednisone – check out the side effects!

prednisonepic2Because my disease came on so suddenly and severely, it was the only option. After a few couple week hospitalizations, I was ready to return to school in October. My family and I had discussed my brother and I changing schools but they understood why plans needed to change because of how self conscious I was. I was so embarrassed of the way I looked that my dad drove me to school everyday and my mom picked me up on the far end of the school building so I wouldn’t have to come in contact with anyone that wasn’t necessary.

I have had fourteen major surgeries, of which my dad came into the operating room with me (because I had such severe Post Traumatic Stress Disorder from everything I had been through) for the majority of them. The recovery room was always the worst part for me and I made contracts {not kidding; one day I will make the one I saved public} and made it known that at least one of my parents was to be there with me so they could advocate for the things I wasn’t strong enough to ask for myself (i.e. adequate pain management.)

I have spent over 350 nights in the hospital and my parents never left me alone. My dad stayed overnight with me and left in the morning to go to work and my mom spent the entire day with me. I am one of the lucky ones and I still had so much trouble with the mental parts of this disease. I can’t even imagine doing it alone because I know without a shadow of a doubt that I wouldn’t be here if I didn’t have such amazingly supportive parents who would do anything to help me.

But with that comes enormous guilt. I am ridden with guilt that I took so much of my parents time, spent so much of their money on medical things, and put them through a lot of emotional turmoil because of my disease. I feel awful that they missed out on fun times together and also with the four of us. I feel guilty that Jeremy (my brother) was impacted so much by my disease. I have so much guilt that I feel completely one thousand percent indebted to my parents. I know they don’t want me to feel this way and they tell me every chance they get that they did all they did because they wanted to, out of love, and I would do the same if I was in their shoes.

And I know they do mean it. But I can’t help these feelings.

As for caregivers like my parents, I believe the worst emotion for them is feeling helpless or powerless to change the situation. I can’t even imagine what it must have been like for my parents when I was screaming in pain from surgery and all they could do was badger nurses. I feel awful that I would ask them to please “make it all stop” when I knew they couldn’t.

The unpredictability that goes along with inflammatory bowel disease affects our loves ones too. I am tempted to say more so on some levels but I think it is just terrible for all involved in different ways. I know my parents were afraid to make plans given the one vacation they planned for all of us, that we were looking forward to for a while, had to be cancelled because I was sick. I think caregivers start to have the same mentality as patients in a way; thinking it is easier not to make plans than make them and have to deal with the fallout of something unpredictable happening.

The fact that many patients who suffer from inflammatory bowel disease need a lot of care mean that it takes its toll on everyone. Patients feel guilty because most don’t want to be a burden on the ones they love (yet, they need to be taken care of.) Caregivers and loved ones feel intense helplessness because of the unpredictable nature of the disease. The inability to commit to plans, worrying constantly, and feeling the need to be by the patient’s side most of the time impacts caregivers relationships with friends and family as well. I know patients say no one understands but I think the same is true for caregivers. It is virtually impossible to share with most friends all that is going on inside the home. Add to that, my parents (and I am sure many others) wanted to respect my privacy which creates a wall with certain people.

I have said it many times before and I will say it again right here… Crohn’s Disease and Ulcerative Colitis are life altering, terribly painful, and emotionally taxing chronic diseases. FOR EVERYONE.

It is good to talk to people in your shoes. If you are a patient, talking to other patients will probably help you. If you are a caregiver, talking privately to other caregivers may give you some relief. There are so many wonderful people in the IBD community. Reach out!

Editor’s Note: Marisa Lauren Troy is a monthly contributor to our blog. You can find Marisa on Twitter @JournalingIBD or on her blog at JournalingIBD.org

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