Why it still matters to me

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My son has been in remission for three years now. He has also just past the threshold to adulthood. So maybe I shouldn’t care anymore. Maybe I don’t have to worry anymore. I don’t have to make any of the decisions anymore, so maybe it’s time to focus on other things in life. We should all move along with our lives leaving the terrible years we spent finding something that worked for him behind us. Forget the past and move on, right?

Well, I just can’t. And there are several reasons for this. First remission is not a cure. Even though he is in remission right now, it is not a cure. He has to stick to his treatment forever. The all the other reasons are the kids in our support group and all over that are being newly diagnosed or have not yet found a treatment that works for them. There is still more to do. These children are suffering on a daily basis. The families are suffering. I see the pain I experienced reflected in the eyes of other parents.

I facilitate a support group for kids, teens and their families. As the contact person for this group I get emails and calls all the time from families that are in bad emotional places. They need someone to talk to – someone who will listen. They don’t want to feel alone anymore. In our group we do have a few kids who are doing very well and are in remission and others that are so sick they cannot go to school or even eat.

I can’t just turn my back on others that still need help. I will still facilitate the support group after my son goes to college next year. I will continue to raise money for research, new treatments, and camp. My voice may be a very small voice in the IBD community, but I will continue to share my thoughts and pass on information from all the amazing people out there working diligently to educate IBD patients and the world about IBD.

Transitioning from Peds to Adult

My son will soon be officially an adult. With that comes the legal issues and medical records. My favorite is that despite the fact that I am paying for his medical coverage and the bills, the insurance company cannot give me any information. Quite irritating. And yes, I know he will just need to sign a form granting me access. Yearly. Still irritating. There are decisions to be made about finding an adult doctor or staying with the pediatric doctor. Plus dealing with all the transitions that come with that.  

But the one I wasn’t prepared for is how he is going to manage caring for his own health. As his parent, I have had to make all the decisions for him. Granted I have been good at including him in discussions and taking into account his thoughts and feelings. I’ve been doing this a long time. I have learned so much about IBD, the treatments, procedures, etc. Now that he is trying to make decisions for himself, I see how much he doesn’t know about his own disease. And that is scary. So being the good parent that I am, I will have to take the time to show him how to find valid and correct information. I will need to start at square one.  

I’ll let you know how it goes.  

~ Cheryl 

 

Please Don’t Argue

And do what I say . . .

Children always have to argue about everything parents ask them to do. I think it has to be the number one irritation a parent has. “Just listen to me. I know what I’m talking about. Just do what I say.”

Children are not rational. We cannot reason with them. That is why we bribe them or we give the ultimate reason – “Because I’m the mom, that’s why.”

Mom

As parents we make the best choices for our children as we can. All we want is to take care of our kids. And it is a difficult task. Add to that the role of taking care of a chronically ill child. Boom! It all becomes ten times worse. Now on top of fighting with our kid to eat that certain food we have to get them to take their medicine. And we’re not talking one medicine two or three times a day. How about more like twenty-seven pills a day an 11 year old has to take? (Yep, True story.) The stakes seem to just be higher now. The risks of not taking a treatment is greater. And our kids just don’t care. They hate taking pills. They’re hard to swallow. But they have to take them anyway. Just stop arguing and take your medicine. Please.

~ Mother of a Crohnie

Remission

When you think of “remission”, what does that mean to you?

I know what I thought the first time my son’s doctor told us that he is in “clinical remission”. I thought he was better. That all was good. Life was going to be normal again. That is my perception of what remission is supposed to be like. Hah! It is amazing how when we start out on this journey – on the unknown path of chronic illness – that sometimes we can be so naive.

After receiving that first piece of hopeful news, that he was in clinical remission, he spent the next few years in and out of the hospital. Changes in medication. Missed tons of school. Lost weight. Threw up all the time. Had no appetite. Despite the ups and downs of his flaring, I kept hearing the word “remission” over and over again. Well, as you can imagine, that word began to get on my nerves. Clinical remission? Really? Then why is he in the hospital four times a year? Why is he still sick all the time? Why is he still losing weight and can’t eat? How did we end up in this place where you are suggesting surgery? If this is remission, I just don’t understand. The words began to have zero meaning for me. I didn’t even want to hear it anymore. I simply didn’t believe in those words.

REMISSION DEFINED

Let’s take a step back and see how remission is defined.

remission /re·mis·sion/

diminution or abatement of the symptoms of a disease; the period during which such           diminution occurs.
Dorland’s Medical Dictionary for Health Consumers. © 2007 by Saunders, an imprint of         Elsevier, Inc. All rights reserved.

Well there you go. Any lessening of the symptoms of a disease is remission. So I should have known better.

But wait! Let’s look at another one.

remission [rimish′ən]

the partial or complete disappearance of the clinical and subjective characteristics of a        chronic or malignant disease. Remission may be spontaneous or the result of therapy.        In some cases remission is permanent, and the disease is cured. Compare cure.

Mosby’s Medical Dictionary, 8th edition. © 2009, Elsevier.

There’s the words I was looking for – “complete disappearance”. So my perception really is not too far off base. In my conversations with the doctors, who was right and who was wrong? I’m going for neither at the moment. Chalking it up as a big miscommunication.

MY DEFINITION OF REMISSION

I’m now seven years into this journey called Crohn’s disease. Have my thoughts changed about what remission really means to me? Yes and no. I’ve come to the understanding that it can be defined differently by different people. When I hear the doctors say the word, I don’t get angry anymore. I know what they are trying to say now. But I also believe my thoughts on what remission means have changed.

These last three years, my son’s treatments have been working. He is probably healthier than he has ever been his entire life. He is able to participate in life in ways he couldn’t before. And as a parent I can’t tell you how insanely happy it is to see your child not suffering anymore. I feel comfortable now saying that my child is in remission.

With him doing so well, I now consider what remission looks like for him. Years ago my thoughts about it were the complete absence of disease. He would be all better. Now I know the reality of his remission. He is doing amazingly well. Yet, are all aspects of his Crohn’s gone? No. He still has remnants of the disease that bother him and that he has to deal with on a daily basis. But his life is better. I now realize and have come to terms with the idea that remission means “mostly better”. It means that Crohn’s is something that will never, ever go away. It will always be there. It must always be maintained. Medicines must always be taken. The foods that bother him must be avoided. And in an effort to stay in remission, we must never forget where we’ve been.

NOTE

IBD patients are all different and all have different experiences. Remission may be completely different for other people. This is just my own experience that I wish to share with you.

My Hat is Off to You

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The other day I met with a friend who has IBD. The shared conversation dealt mainly with our common struggle with IBD, hers as a patient, and mine as a caregiver. Of course we talked about all the usual stuff concerning IBD. Which medications that each was using. We discussed what we knew about the current research on new treatments out there. What kinds of food to eat. Surgeries. Scopings and all the horrors of prepping for them. Of course we talked all about poop and mad dashes to the bathroom. And we even talked about how as mothers we had to be strong for our children.

When I get together with the parent caregivers I know, we talk all about the same things – treatments, research, food, etc. There have also been many a conversation about how we as caregivers need to put on our game face for our kids. We need to be strong and positive for them. Hold all those fears and tears inside and reassure your child it is all going to be okay.

But listening to my friend the other day, it really hit home how my being strong for my kid is very different from her being strong for her kids. She would be going into surgery and, despite her child’s concern, she would tell her it was nothing, easy peasy. She didn’t want to worry, upset or disrupt her child’s life. Wow! Now that’s what I call strong. Facing the pain, the fear, and the struggles that a person has to deal with on a daily basis all alone because they don’t want to worry their family.  That is just not the same kind of strong that a caregiver has. My hat goes off to my friend and all those who are like her out there. I will keep you all in my thoughts and prayers.

Cheryl

Trends in IBD

Recently I stumbled across some information about an epidemiology study on Crohn’s and ulcerative colitis. Although this research is not studying treatments and cures, I found the information very interesting. You see, I know so many people who are suffering from severe symptoms of IBD and struggle every day. I also know that there is a movement to educate the public about IBD. After seeing these numbers, I am starting to understand why it is so difficult for people to take IBD seriously. Most people diagnosed have mild symptoms. So I can understand why there would be confusion about why having IBD would be so bad.

For those who do not know, epidemiologists study the patterns and trends of disease. I will give you bits of this information and the resources as I get them. Today I will talk about the incidences and risks of hospitalizations and surgeries for both UC and Crohn’s. These studies were long range studies from 1940 to the early 2000’s.

Let’s start with UC. So over this time frame, more men will be diagnosed with UC than women. The peak is of course during a person’s 20’s but could be diagnosed in their 70’s or later. Over the years it has appeared that the number of people getting diagnosed are leveling out a bit. There does not appear to be an increase of the number of people being diagnosed with UC. Now this next part is interesting. We’re talking the risk of hospitalization with UC. If you have been diagnosed with UC, your risk of having to be hospitalized withing the first five years is about 30%. That means about only one out of three people with UC will have to go to the hospital. Within ten years it is about 39% and in twenty it is abut 50%. This means that anywhere from 2/3 to1/2 of the people have mild symptoms. That is a lot more people than I would have thought. They are the ones that can manage their disease with few medications and maybe diet. For the rest of you, you are the chosen few.

How about we move on to the risk of a colectomy in UC patients? Within the first five years after diagnosis about 13% of patients need a colectomy. In ten years it rises to about 20% and in twenty-five years, only 28%. This indicates that only 1 in 3 people with UC will have to have their colon or part of their colon removed. If you are diagnosed, you have a one in three chance of having that surgery.

Now for some stats on CD. Across the age ranges for people diagnosed with CD, male and female are pretty much equally diagnosed up to approximately the age of 30 years. After that age more men are diagnosed with CD than women. The peak is the same as UC, in the 20’s age range, and people can be diagnosed well into the 70’s and later. Over the time frame of 1940 to the 2000’s the number of people being diagnosed with CD is going up. The incidence rate is higher. In comparison with UC, there are still more people being diagnosed with UC than CD, but CD is catching up.

With CD we didn’t even get a chart on hospitalizations. It went straight to your first resection. So here we go. Within five years of being diagnosed the chance of a resection is about 40%, at ten years about 50%, and twenty years about 60%. Wow. That’s not fun. So next stats are for a second resection. A person who has had one resection has about a 20% chance of getting a second one within five years of the first one, about 35% within ten years, and about 47% within twenty years. I’ve heard people say that it isn’t if you will need surgery for your CD, but when. The odds are not in our favor.

You might say, “so what?” If I were a newly diagnosed person, these are some statistics that put my new disease in a big picture. I know that when my son was diagnosed I had no idea what Crohn’s disease was. Never even heard of it. I think information like this, even though it isn’t about what treatment is best or when are we ever going to get a cure, it does put it into better perspective. It gives you some expectations. It can help you gauge how well (or not) well you are compared to the overall IBD population. Bottom line it is more information. Plus, for people who are doing research for treatments and a cure, it raises questions. Why does the incidence rate of women drop away from men in their 30’s? Why is UC leveling off while CD is increasing?

I will have more to share in the coming weeks. Please feel free to share my blog with people you know.

Hugs, thoughts, and prayers,

Cheryl

Finally have a link to the video.  http://medprofvideos.mayoclinic.org/videos/grand-rounds-tales-from-the-frozen-wasteland-the-epidemiology-and-natural-history-of-crohn-s-disease-and-ulcerative-colitis-in-olmsted-county