Life and Living with Crohn's Disease

Life and Crohn's

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Being the Support System: Living with Crohn’s Disease

Let’s continue the Mama Love today, shall we? Don’t forget–Awesome Mother’s Day Running Mom Giveaway up now (Ends Friday)! And I just added some more to the pile…

I have something incredibly special today. Suzlyfe’s Mommy, Clare’s First Guest Post. I think that sometimes you all read my blog just for my mom’s comments…and I’m ok with that. She is freaking awesome. I want to keep my gushing to a minimum, because I really want this post to be all about her, but I have to say a few things. My mom has been my rock and strength throughout my life, but never was she more sorely needed than when I was sick and going though my diagnosis. I couldn’t have gotten through the ordeal (or anything else, really) without her. But here also lies the rub: Yes, you need to fight your fight, but rarely are battles won without allies. When you are in the midst of a battle, you are not necessarily in the position to best help those who are supporting you. 

So how do you (the support team) make it through seeing your loved one go through an ordeal (illness or otherwise)? Who supports the supporters? How do you act as an ally/support system without losing who you are in the process? 

Take it away, Mama Clare. (LOVE YOU SO MUCH I CAN’T STAND IT):

Living with Crohn’s Disease: The Support System

(I’ll use the words “child” and “her” because that was our situation, however, it could be a spouse, parent, sibling, friend, what-have-you)

So, your child’s doctor has just told you that your precious child has a chronic, auto-immune, inflammatory, incurable, non-fatal, episodic disease and will require the need for a specialist in (said field) for the rest of her life……..

breathe meme

Before anything else: breathe…..just stop right there and breathe. If you don’t, you will pass out and that certainly won’t help your child.

Your first reaction will probably be denial, but please recognize that, at a much deeper level, there is FEAR, in all capital letters. (SuzNote: Remember when I discussed the difference between “fear” and “anticipation or excitement“? This is fear.)  This isn’t news you can just take lightly– and you need to give yourself a chance to absorb it and a private place to react to it. Your child does not need you to fall apart right as she comes out of recovery.  

And a glass (or tasting of 3) of wine doesn't hurt!

And a glass (or tasting of 3) of wine doesn’t hurt!

Now, after you breathe, get a hold of yourself and then realize and acknowledge that life as you had known it has just changed—I’m sorry, but that is the truth. Your second reaction might surprise you, it certainly did that to me. I felt a sense of relief, because now we had a diagnosis. Having a diagnosis gives the monster a name and a plan of action can begin to take shape for dealing with the monster. (SuzNote: A great post on Dealing with Diagnosis)

The Moment of Diagnosis

After the biopsies came back positive for Crohn’s, I asked her doctor to tell Susie that, indeed, she did have Crohn’s Disease. I was so unglued, that I knew I’d scare her to death if I told her. She needed to hear it from someone who knew what she was in for, not someone who was walking a very fine line trying not to burst into tears at the drop of a hat. Dr. S also told Susie that this was her disease, not her mom’s and she, Susie, needed to learn to read her body and be able to tell her doctors what was going on inside of her.

She also said that we would start Susie on a course of medications to see if we could get her Crohn’s under control. At the time, she didn’t say the meds were to get her into remission, but rather to get her disease under management. This wasn’t going away, and it would take about 12-18 months until we knew what medications would really work on her disease.

Study Your Opponent

Crohn’s presents in a variety of symptoms, and we had to figure out which of those symptoms Susie’s disease would manifest so we could treat her in the best way possible. As a parent, you will scare yourself to death if you believe everything you read on the internet. Find what Web sites your doctors recommend, and do your research carefully. We recommend CCFA’s Website or Mayo Clinic. I’m the one who had to sign the permission forms for medical procedures, for drug infusions, for grey-box and black-box drugs that would go into my child. I took and still take this job very seriously. Its part of being a “Crohns Mom.”

Flexibility

As I waited in Outpatient Surgery for my 13 year old daughter to come back after the colonoscopy that would confirm the diagnosis of Crohn’s Disease, her doctor came in to visit with me. She was direct, confident and (looking back) positive. These were words she had said to many other parents and they were perfect and true: she told me that the most important word in my vocabulary would now be “flexibility.”

Shirtless hot guy yoga

I personally take my flexibility very seriously.

Dr. S. told me that we would need to be flexible. We would need to make changes to many aspects of our lives, but we should certainly continue to live life and enjoy it. She told me to buy only refundable airline tickets, to make sure we bought trip insurance, to do my homework on the availability of medical care wherever we and/or Susie might go on vacation. (SuzNote: When I lived in Jamaica for a month, and when I went to Europe with school, we always made sure that I had MedJet Assist ready to go, just in case). She did not tell us to stop living our lives or stop Susie from living hers, rather she told me we would need to approach our lives in a different way. Remember that great motto?– “Be Prepared”– yeah, don’t forget that!

Helping Susie Live, but Letting her Fight her Fight

So, my first task after receiving the diagnosis was to acknowledge that this disease would be hard for Susie to deal with and the first thing I needed to do was to make sure that she knew that I accepted her exactly like she was. She was the same Susie that she had been before the monster had a name.

baby suz and chris halloween

Not the monster, just her brother, Chris.

Susie did not want to be a victim of this disease, so I made sure that she wasn’t treated as one. She wanted others to see her as a kid—- with blonde hair, who loved horses, dogs, was very smart and…..oh, by the way, had Crohn’s Disease. (fine print of life, not the title header). That was very important to her– that her illness would not define her as a person. Crohns may play a major role in her life, but she lives with it, not in spite of it.

marathon training chronic condition crohns suzlyfe

As a mom, my most important jobs were to accept my child as she was, to help her to accept herself, to teach her how to read her body and when to act if she thought she was in trouble. I also needed to teach her to be her own advocate–to stand up for what she needed and not to be afraid to speak up.

Communication

As part of that day where her innocence ended and her adulthood began, I made a promise to Susie that I would not lie to her. I would answer any question that she asked me–about anything. In turn, she needed to promise not to lie to me when I asked how she felt, how her pain levels, were, etc. I needed the truth, as I could adjust some of her meds based on her answers or call her doctors as we flew through Atlanta traffic on our way to their office. I also learned to read her every expression, grimace, slight change of skin color. The disease may have been hers, but this was on my watch…….it always will be.

Getting the Team in Place

One of the nicer parts of having an actual diagnosis was that Susie now had a Pediatric GI doctor in a Pediatric GI practice where the entire medical staff knew what to ask and how to answer questions from panicked parents. The ability to Triage-by-Phone was a godsend. I called almost every day for months!

remicade

I sent an email to her teachers at school telling them that this was what she had, how to deal with an emergency, and to please allow Susie to leave the classroom without permission should she need to be excused. Crohn’s doesn’t give you a lot of time when it decides to “act.”  I did this each year that she was in junior high and high school. When she started looking at colleges, my one request was that she let me know which schools she was considering so that I could find the closest appropriate medical support she would need.  Once she decided on her choice, she contacted the Special Needs Student Services support group and she was able to secure the accommodations that would meet her needs.

YOU Can’t Live YOUR Life in Fear, Either

But perhaps just as important as all of the medical aspects of life with a chronic illness, she still needed to be able to play, and so did we! There will be times when you won’t be able to leave your child’s side out of your own fear and need. I also had to remind myself that Susie had a brother and a dad and that they needed support and help in dealing with this new hand that we had all been dealt. This was our life now, our new normal. We all had to adjust to the changes that this “diagnosis” brought to our lives. Please give yourselves some time–to adjust, to react, to do research, to cry and yell (alone in your car, is always a good spot!) and then to regroup and do the everyday things like take the dog to the vets and buy milk.

mom me mcm marathon suzlyfe

This is not a sprint, it is a marathon— so train wisely, keep yourself well nourished and looked after. You are the one who will set the tone for the rest of your family–savor the good things, eat dessert first and enjoy life–live it everyday! This was her reality and it was now ours, as a family. She would never be alone in this–we loved her just as she was, and we were all in this together. As Chris Cooper said in the legendary movie, Seabiscuit, “You don’t have to be perfect to be just fine.”

 not-perfect-fine-seabiscuit-crohns-disease-suz

Have you ever dealt with a life-changing moment as the support system? How did you deal with it?

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