If This Is As Good As It Gets, Will I Be Satisfied?

If This Is As Good As It Gets, Will I Be Satisfied?

Acceptance. It’s a thing and I’ve done it. I get it. I have Crohn’s disease and I can accept that. Do I like it? Nope. But I can accept it.

What I’ve been thinking about is what it means to be satisfied. I am not satisfied with my life as it is right now so what does that say about me? Does it mean that I have in fact, not accepted having Crohn’s disease? Are satisfaction and acceptance one and the same, or are they two separate things?

See: I’ve been sick with IBD since I was a baby. I’ve been in and out of the hospital since I was 10 months old.

hospitalization

I accept that.

Fine.

It is what it is.

My problem is that I am occasionally angry. I’m angry that I grew up during the time before biologics. I’m angry that long-term steroid use, 5 ASAs, and surgery were the standard of care during my childhood. I’m upset that biologics were only approved when I was a young teenager and that getting them as a pediatric patient was more of a struggle if not impossible. I’m angry that I was not able to try them before my surgeries because of the home I grew up in, the doctors that I had, and all that played into what it was like to be a powerless child at the mercy of adults. Adults who don’t have your best interest at heart or who do not have the understanding to help you.

Long-term steroid use did their damage and eventually failed me. Azathioprine never worked and later I found out my TPMP enzyme activity was low and so I couldn’t use it effectively anyway; it would be dangerous. I am angry that I had 3 emergency surgeries and endured many complications. I’m angry that even if today I achieved a deep remission that all the permanent damage that has been done up until this point cannot be reversed. No matter how well-controlled my Crohn’s disease gets from this point forward I will always deal with the damage that has been done in the past.

I was not one of those “diagnose early and treat aggressive patients.” I was a diagnosed way-too-late and hardly treated patient and now I live with the consequences. That can make me angry, jealous, and resentful.

I am angry that I have another digestive illness (chronic intestinal pseudo obstruction) as a result of having Crohn’s disease, and even when my Crohn’s disease is doing as well as it ever has, that I still can’t feel well. I can’t feel good because this stupid other illness is debilitating.

If my quality of life will never improve from here, will I be satisfied? I don’t think so.

hospital ER barium contrast CT scan crohns

What if this is it?

What if the best that it gets is this?

My body a mess – having been cut open in the same spot a few times; my guts spill out of their abdominal cavity. I have adhesions from surgeries and a consistently dilated bowel from pseudo obstructions so that my daily life is a day of fatigue and knowing that I am going to feel pain and nausea as soon as I have a bite to eat or a sip to drink. I will wake each day to weigh my options – take a shower and use all my energy for the day or don’t shower to save some energy? Eat and feel pain or put off eating until later so that I can do more than just lay down? Go to the grocery store and use all of my energy or conserve what little energy I have to visit a friend? And if I decide to attend a family event, a party, or go anywhere, I do so knowing that it will take a few days of rest to recover.

That isn’t right.

This is not right!

I don’t know if I can be satisfied with that.

What about all that has been taken away from me? I missed so much time from being in the hospital or being sick. I have had to lose jobs, miss school, change career paths, and be out of work. I have missed so very much. I accept it. But will I be satisfied if my life continues the way that it is right now forever?

There is no point in being angry about the past and I know this. I cannot go back and undo a thing. I can’t be mad that things were different back then than they are today. For the most part I am hopeful and thankful that patients diagnosed today will not endure a lot of what I had to endure. I am optimistic about the future of patients diagnosed with Crohn’s disease and ulcerative colitis because I know how things used to be and I can see how far that we’ve come, and I know that we will get even further than we are today.

I know that acceptance is something you practice and that you don’t just get there and stay there. Perhaps acceptance and satisfaction do go hand-in-hand and I actually have a lot further to go than I thought I did in terms of accepting things? I just know that I’m not satisfied with things as they are right now. I can accept having Crohn’s disease but I don’t want to accept that this is as good as it gets. My quality of life is not acceptable to me.

I won’t accept that until I know that I have to.

I have so much that makes me happy right now. I have found the love of my life, I have a roof over my head, food to eat, and a car to drive. I have people who love me and goals to achieve. But I want more. I want energy; a day without fatigue. I want to be able to eat without pain and without having to lay down because of the nausea. I want a full year without being in the hospital. I want to get out of the house because I have something fun to do and not because I am on my way to a doctors appointment. I want to get married soon and have kids and move past feeling stuck. I want to catch up on lost time.

I want.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The InflammatoryBowelDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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