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

What am I doing for World IBD Day?

In the IBD community, this question has been going around and many are responding already. Some are much better at reaching a larger audience. Others may be reaching out to friends and family. IBD is and invisible chronic disease that is difficult for some to talk about.

Yet, the question is what am I doing? Okay. Well then. Here is my list:

  1. My Blog!! – I have really got to get it together and just start writing. I have lots to say and lots to share. So today begins a new day with new determination.
  2. Facilitate and promote a growing support group. – I facilitate a group for kids with IBD, and we are growing. More and more people are reaching out and looking for a place where they can be with people who understand what is like to be in the hospital all the time and have crappy procedures and tests. Kids really need this kind of support.
  3. Irritating my Facebook friends! – Yes. That’s right. Tomorrow will be a barrage of posts all about IBD, what it is, what it isn’t, and how it truly affects people. I expect it is completely possible that I will get a few unlikes tomorrow. Truthfully, I don’t care. This is part of my life. If it is too ugly for someone to handle, there isn’t much I can do about it.

Maybe this isn’t much for World IBD. Maybe I won’t be reaching millions of people tomorrow. But I will do my part to spread awareness about IBD because it is not just a tummy ache.

How I became a Mother of a Crohnie

I have heard so many stories of people’s struggles getting a diagnoses for their Crohn’s or UC. Part of my story is like that too. The biggest difference and biggest problem was that my son’s symptoms were so atypical that no one recognized it for what it was. He started not “feeling well” when he was about 5 years old. He didn’t want to eat and didn’t have a lot of energy. But really not any other symptoms. He did get constipated a lot. I always assumed he would “grow out of it”. This was just a phase he was going through and one day everything would be back to normal. Well, as you can probably guess, normal never happened. By the time he turned 11, he still ate next to nothing, he couldn’t keep up with other kids, he was skin and bones, and his anxiety was off the charts. This was not normal. Something was seriously wrong and none of us could live like this any longer.

 

Enter the GI doctor, after the initial visit, her best guess was that he had functional bowel disorder, based on the fact that he didn’t have bloody diarrhea. Essentially, it was all in his head. I don’t recall all the first lab testing she did on him, but she scheduled a colonoscopy and endoscopy. Well we received some pretty pictures of his insides that day. My first thought was “no wonder he feels bad all the time”. She told us that based on the photos of the affected areas of the bowel, he probably has Crohn’s disease. At this point I thought to myself, “Isn’t that something old people get?” I knew nothing about this disease. Really didn’t even recognize the name. The biopsies later came back confirming Crohn’s. Our lives completely changed that day. The rules on taking care of my child changed and changed in a way that I had no references for. Everything I thought I should do as a parent was chucked out the window. New standards for living and new expectations were set. When our kid spends so much time in the hospital, our ideals just change.

 

Fast forwarding to today, after many years of struggle and many different medications, my son is finally in remission. Yes, this is amazing. I count my blessings every day. But does that mean I am no longer a Mother of a Crohnie. Absolutely not. This disease has no cure. Just because he is in remission does that mean I don’t worry? NO! In the back of my mind there is still a space that is occupied with worry and it rears it’s ugly head each time he complains of being ill. Soon he will be an adult with Crohn’s. But I will always be a Mother of a Crohnie.