Tag Archives: Inflammatory bowel disease

Coming Full Circle

Today, I’ll sit at a table at a health fair – creating awareness for Crohn’s Disease and other Irritable Bowel issues. Months ago, I searched online and found a Crohn’s patient advocacy program. I signed up. I got an advocate. She and I have talked and emailed numerous times. Today, she will be at the health fair with me and I get to meet her in person.

The patient advocacy program changed my life in many ways, giving me support and encouragement and pointing me in new directions when I needed it. It has been a long journey, but I’m grateful today to have this experience and hopefully give back.

Today, I hope to promote understanding. Crohn’s is not understood well and often stereotyped incorrectly. No, not everyone is pencil thin. No, not everyone has to run to the bathroom endlessly. It is such a broad disease that manifests itself in a variety of ways. Two patients, same gender, age, socio-economic background and whatever else you can imagine can both have Crohn’s and manifest it differently. Much of the pain and inconvenience isn’t in the open. Many suffer in silence.

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New Words

I studied French in high school and college. I love foreign languages! My oldest is studying Spanish. It was so much fun to amaze him at translating some words, just because of their similarity to French words. Studying even just one foreign language can open up all kinds of opportunities!

I hate the new language I’m learning – Crohn’s Disease. Today’s new word – arthritides. I hate these little chemicals that Crohn’s releases into my body. I’m not enjoying this at all. Writing (the old fashioned pen and paper kind) is painful and at some point I am sure even typing will become more trouble than it is worth.

The more I study this new language, the more I learn that Crohn’s is really a vast network of disease and symptoms. It is much bigger than most of us realize. I’m learning to recognize that every new thing isn’t exactly new, just a different manifestation of the disease. Bummer.

It does make me think about other connections though. What new “symptoms” in relationships am I frustrated about, when really they are just new manifestations of a problem that has been there for some time. Maybe that adage about nipping something in the bud is some of the best advice ever! If you are dealing with a new struggle right now, take the time to see if perhaps it is just a new manifestation of something you haven’t taken care of yet. That doesn’t mean it will be easy to do. The longer you leave something to fester, the more effort it will take when you finally decide to take care of it. But in the end, it will be worth it. Now if I can just figure out how to defeat arthritides.

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Dear Diary

“It’s the biggest thing happening in East Texas right now.” This is, of course, from the health care perspective. So now I find myself in the midst of the most happening thing in my neck of the woods – a double blind study about whether or not a particular medication is helpful to Crohn’s patients. There are three things that could happen. I could get a generic dose of the medication. I could get a dose that is measured for my age, height and weight. I can also end up with the placebo. I feel like I’m in one of those “you choose the ending” books that I used to read in junior high.

Blood work, EKG, lots of questions, lists of medications and on and on I went through the screening process yesterday. Am I a good candidate for this study? That is still to be determined. In the meantime, I have a diary. I’ve never been good at diaries. This blog is the closest I’ve ever come to writing something down about life on a regular basis. But now, I have to record each day the meds I’ve taken and my pain level and a few other things that Crohn’s patients will know about but I won’t mention here.

My assumption? Once I’m sure to be in the study, I start the diary. Boy was I wrong. I’m supposed to start it right now! These people need to know how bad my pain level is and everything else to even see if I would notice a change due to a new medication. They have to see a record of several weeks of how bad it is, so they will know if I’m actually improving or not once the medication (or placebo) starts.

I’ve always seen myself as a strong person, able to overcome. Keeping track of my pain isn’t going to be easy. I’ll have to admit just how much this disease has beaten me up the last couple of years.

I’m going to have to be broken, vulnerable. Evidently, that is when healing can begin.

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No Repeats

Today I found myself in the care of a man who really loved his job, an x-ray technician. The test was necessary before I can become a part of a medical study for Crohn’s Disease. The tech was friendly, answered any questions I had and walked me every step of the way through all that was going to happen cheerfully. I began my normal conversation starter by asking him what he liked about his job. His answer included the patients themselves, being able to cheer people up and being on the move and not being bored.

He had walked me all the way out to the lobby and began visiting with Karl also, patiently waiting for me to be done with the test. The tech went on to explain that he does his best to simplify the instructions for what patients need to do and what he is going to be doing during the procedure to put them at ease. He takes the time to interact with them and get them comfortable so they endure the test well. He said he rarely has to repeat any tests, because his patients are so comfortable that they do the test well.

Wow! What if every single person had that as their motivation? Imagine if everyone had the aim of putting their client/customer at ease before beginning whatever work they do so there was no need for a repeat? Does it pay to take the time to connect with your customers? For this x-ray tech it does. I truly believe he ministers to the patients that come into the facility where he works. God bless, especially  health care professionals, who take the time to put their clients at ease. You are a blessing

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Ain’t So Bad

I am not, I repeat not, a Rocky fan. However, today, it best sums up my mantra. I look pretty roughed up after several rounds with Crohn’s Disease the past couple of weeks, so all I can do is stay in the ring and shout back: Ain’t so bad! It’s better than crying.

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Release

What were you thinking? To any physicians and surgeons out there, I’m sorry, but please don’t take this personal. If I could go back 25+ years I would yell, scream, throw things around or do anything else I could to get the attention of those people, grab them by the ear if I had to. “What were you thinking?” What kind of a doctor takes 18 inches of colon out of a 14 year old girl then just leaves her to fend for herself? Did you not even think to check for Crohn’s Disease, Colitis or anything? Is it just a favorite past time of yours to yank out parts of a person’s body, leaving a lovely exploratory scar as a parting gift?

I’m working through the grief. After living with gastro issues for more than 25 years, I’m dealing with learning it was Crohn’s Disease all along and I’m grieving what could have been. If the doctors and surgeons had followed through, my life would be completely different. Then again, maybe they did me a favor. What did I accomplish (college degree, three kids, Who’s Who award, program director for a television network, published poet) that I might not have – had I seen myself with limitations? I had my whole life in front of me. You took out 18 inches of my colon and left me with no diagnosis, just to figure it out on my own. Was I better off that way?

Even if I could find those doctors and surgeons and was able to give them a piece of my mind, it wouldn’t give me peace of mind. In reality, there is nothing that can be done now to change anything. “I’m sorry, we didn’t know that much about bowel diseases at the time,” doesn’t work for me. They diagnosed my sister. Was I a bad girl that I didn’t deserve a fair shot at knowing what I would be struggling against the rest of my life?

I’m coming up on one year of getting my diagnosis of Crohn’s Disease. I’ve had to learn a lot the past year. I’ve been through a lot with medications, lab tests (some cost $400 a shot), weekly blood draws to ensure proper medication dosage and learning about things to do and not do for Crohn’s Disease (sure would have been helpful 25 years ago). I’m grieving a part of my life that could have been lived differently, had I known. This week, I’m working on accepting what has happened, because obviously there is nothing that can change it, forgiving the people who failed me all of those years ago and moving on from where I am at now.

This is a journey of acceptance, forgiveness and release. God give me strength and thank You for walking with me.

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One Step at a Time

Imagine the hero of a black and white B movie desperately overacting his line as he realizes his many attempts to save the world haven’t worked yet and he is tiring way too fast. “Must conserve energy.” Finally using his brains to figure out the best way to defeat alien invasion, he summons his last bit of strength to save the world!

Welcome to the life of many Crohn’s Disease sufferers. We often do feel trapped in this B movie drama every day, trying to conserve what little energy we have for the important things in life. I’ve had to develop a gravy principle: Get two things done each day and everything else is gravy – a bonus. I have to pace my speaking/presentation commitments enough apart so I have time to recover between them. Truly life is lived, one step at a time.

While I’ve suffered from Crohn’s Disease for more than 25 years, I’ve only known what I was battling since January. Yeah, it really stinks. Sometimes I wish I could jump back in time and knock on the surgeons’ heads who opened me up in an exploratory surgery, took out 18 inches of my colon and left me a parting gift of a lovely scar. “Hey guys! Did you ever think that damaged colon might be due to Crohn’s Disease? Maybe you should follow up on this. Order a colonoscopy, some stool samples and some bloodwork.” Alas, no one was there to tell them, so they didn’t do it.

Maybe that’s why I’m where I’m at now, to make sure it doesn’t happen to anyone else. There are many out there like me, misdiagnosed or undiagnosed for years, struggling against something they couldn’t name and didn’t know how to fight, just trying to figure it out on their own. So as this disease sucks my energy, I live life only one step at a time. I choose the most important things to do each day and save my energy for those.

I’ve made a lot of new friends and connections since my diagnosis. I now keep up with “Girls with Guts” and a Crohn’s Disease Online facebook page. It helps to see what others are struggling with and know that I’m not alone. It also helps keep us from reinventing the wheel. Hey, if something works – share it!

So since I’m taking just one step at a time, I’m going to make them count. This October, I’ll make them count at the Take Steps for Crohn’s being held in Tyler, Texas. I’m looking for a sponsor for a team, or else I’ll just sign up as an individual walker. Either way, I’m going to help raise awareness about this lifelong disease and how many times we look “normal” on the outside, but we are suffering greatly. Maybe I can help just one more 15-year-old girl avoid 25 years of not knowing the enemy. Everyone deserves to know what they are fighting against!

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