Saturday, April 2, 2011

My Story

Hi, I am Dani. I have many titles, Mommy, Wife, Daughter, Friend and Crohn’s Patient. I have listed them in order of importance.

I was diagnosed with Crohn’s disease about ten years ago. I had the disease for years before I sought treatment. I had a problem that was very specific to Crohn’s Disease. I had an abscess, which turned into a fistula. (A fistula is an abnormal tunnel that connects the bowel to another organ or the skin, which drains and gets infected frequently. That one fistula has since turned into seven.) So I got some health insurance, walked into my doctor’s office asking for a referral to a Gastroenterologist because I thought I had Crohn’s Disease. My doc literally laughed and asked why I thought so, I told him and he stopped laughing. Turns out, I was right. My diagnosis came much faster than my brothers and sisters of the bathroom.

Crohn’s Disease is an immune response that causes ulcerations in the digestive tract anywhere from the mouth to the anus. While the complications from Crohn’s disease can progress in severity, the case someone has (meaning the location(s) and span(s) of the ulcers themselves) is the case s/he has. The disease is smart though, if the portion of bowel that is affected is removed, the disease knows to come back to the same location where the new part of bowel has been reattached. In my case, the ulcerations are in my entire small bowel. I didn’t know this until two feet of my bowel had been removed. I got home from the hospital and had the exact same symptoms I had before the surgery, with the same intensity. About tweleve diarrhea bathroom visits a day, joint pain, fatigue, frequent accidents, and the fistulas. My doctor wanted to explore why I was still having problems, so he ordered a lot of tests. A capsule endoscopy (a horse pill with a camera in it) revealed the news that any more surgeries to my bowel would be useless. (Although I would endure many many more surgeries to manage the fistulas.) I would also not benefit from a colostomy or ileostomy, since no one can live without a small bowel. I would have to rely on drugs to manage my disease. The problem there is that I have been on all of them, and none of them have worked. I have also participated in four clinical trials, and I am batting zero there too. The only therapy that has helped me is something called Total Parenteral Nutrition (TPN.) It is where an IV is sewn into an artery and all nutrition and fluids are pumped into the circulatory system. This therapy can last for months, and during that time the patient is not allowed to eat or drink anything. It is as unpleasant as it sounds, and almost an unreasonable price to pay for a little relief. It does work, which is why I have done it twice.

Having an incurable disease is scary, what terrifies me more than anything is that I will not have the energy to be the mommy that my toddler son deserves. I fear that he will get the disease. Every time he has a bowel problem (which all babies have from time to time,) I become inconsolable. I don’t want my challenges to be passed down to my son. I want to live a long healthy life and see my grandchildren born one day. Being an old lady someday is hard to picture when my body takes such a beating everyday.

Aside from the need to be near a bathroom constantly, a big challenge of having this disease is getting people to understand that it is possible to be very sick and very happy at the same time. What choice do I have? If I put life off until I am better, I may not have any life at all. There is not a cure for my disease. I hope for one, but I can’t rely that it will happen in time for me.

April has told me a couple of times that she admires how I handle having Crohn’s. What I hope I have conveyed to her, is how much I admire how she handles having this disease. She has worked tirelessly to do what she can to help raise money for a cure. She is going as far as to run a half marathon for a cause that touches her deeply. She has made it clear that she isn’t just doing it for her. She is doing it for me, for my son and for every single other person living with this debilitating and isolating disease. April is one of my heroes, so please support her. Supporting her is supporting us all.

Friday, November 19, 2010


Groucho Marx once said that he would never want to be a member of a club that would have him as a member…or something like that. I totally get that. I hate that I am a member of the yet to be cleverly named sick person’s club. Managing disease is a full time job. It takes up so much time and energy, and sometimes I feel like it is all I talk about because it takes up such a big part of my time. When I am juggling lab visits, doctor’s appointments, symptom diaries and procedures on top of diet and the disease’s symptoms themselves, it is easy to get lost in the disease. It can become difficult to focus on the other things in my life and appreciate them, because sometimes it feels like I don’t have time or energy for anything else. The hardest part of being sick is recognizing that focusing on the best things in my life is exactly why my disease takes up so much of my time. I want to be free of the symptoms, and have energy to be a good mom to my son, a good wife and friend. That is what is important to me.

We all label ourselves. I know a lot of sick people who wallow in illness; in fact I have been one of them. It is so easy to get down in the dumps when you are sick all of the time. I have been sick for ten years, the only break I have had from it was when I was pregnant (which obviously has its own set of symptoms.) Being sick for that long would wear on anyone. After a while, it becomes harder than a healthy person could imagine not to be swallowed up by the disease. Especially when it is constantly reminding me that it isn’t going anywhere, either by all the hoops I have to jump through, or by the symptoms.

I have to constantly remind myself that I am jumping these hoops for a reason. Even if I have jumped a million hoops for nothing in the past, all of the stuff I have to put up with may not be for nothing this time. I hope everyday that I recover, that one day I will resign from the club.

I am not Crohn’s Disease, or just any one thing. I know it would be motivational to say that I am thankful for Crohn’s having reminded me of what is really important, and it has taught me not to take anything for granted. I am not going to say that. It’s crap. I know myself well enough to know that I would not have taken anything for granted if I were healthy. I resent Crohn’s and that is why I work so hard to get rid of it, and that is why I have worked so hard to help make sure other people don’t have to know this disease. Although my resentment is an honest admission, if I wallowed in that, I would be a bitter and angry person all of the time.

Acceptance. I accept that Crohn’s is the hand I was dealt, but I have other cards, too. I am going to smile, and give myself the appropriate really long label for my life. So if I could help anyone else battling illness, I would say that no matter how much time and energy are taken up by your disease, don’t let one thing in your life define who you are. Disease is a huge part of my life, but I don’t want it to be the sum of my life, and I refuse to let that happen, and I don’t think you should either.

Thursday, November 4, 2010

Do Your Homework...

Have you ever been asked to attend a business meeting at the last minute, walk into the meeting unprepared, and felt stupid when someone asks you a question that you were not prepared to answer? Yeah, me either, but I have seen it happen to other people, and it is uncomfortable to watch. When it happens at the doctor’s office, it can have an impact on your health, not just embarrassing you at work.

Anyone who really knows me will tell you that I’m a talker. I am capable of active listening too, both of those skills are needed if you are going to have a lifetime membership in the (yet to be cleverly named) disease club. (NOTE: I should have a contest when I have more than five readers…)

When I started having to go to the doctor at least every six weeks, I found that they always asked me the same questions.

1. Weight – I now walk by the scale and announce my weight to the office. I weigh myself daily and have proven to be honest, so they allow me this privilege.

2. Meds – They want to know the meds I am taking and their doses. Nobody who takes as many meds as me (and most other chronically ill people) can just list all of them and their doses without help.

3. Chief complaints – what is going on with the disease since the last visit? Have you ever walked into a record store (before iTunes) and right until the second you walked in knew exactly what you wanted? Then you find yourself ambling through stacks of CD’s trying to remember what you came in for. You walk out having bought stuff, but not the stuff you wanted. That used to happen to me at the doctor’s office all the time. I knew what was wrong before I got there, but as soon as my doc walked in, I completely forgot unless it was throbbing that very minute.

Dani’s Greatest Hits – After a while, I got smart, and I made a list of my meds, then it grew. My doctor’s nurse and I call it “Dani’s Greatest Hits.” It goes like this:

Meds - At the top, it has a list of all my meds, how long I have been on them, their dose, and results. I put them in a word document and use a little table to make it easy to read.

Past therapies – after a while my chart got so big that my doc had to thumb through three volumes to see what we have already tried, so I thought he would find this useful. It lists, what I have tried, how long I was on the drug, the date I started and why I stopped.

Surgical history – all my surgeries, dates, and outcome

Complaints – Basically I have my entire chart in one document. I bring it to appointments, and that way I don’t get record store syndrome. Also, my doctor doesn’t waste time trying to think of where to go from that point. He likes my greatest hits so much that he has given it to the hospital when admitting me in the past.

I have also found my greatest hits useful when I write to other doctors asking for advice. It tells them that I am invested in my care, and gives them a brief history without taking up too much of their time.

Be concise. If you are not, docs will stop listening and you will not be heard. Do your homework. When they say, “how long have you had this pain?” Say “three weeks” or however long, but know the answer to the question. Don’t start with a sigh, and say, “well, I guess that it started when I was three” (I am boring myself even writing that.) They will think that it must not be too bad if you don’t even know when it started. This goes for the greatest hits as well. Years of medical history I have been able to keep to one page. I am sure this is partially why my doc likes it so much.

Doing your homework tells your medical providers that you care about getting better. It has been my experience that it inspires medical providers to care more than their job requires them to, and that works out well for you in the long run.

Onto that contest for naming the sick club…

Monday, October 25, 2010

How to Get to Second Base With Your Dream Doc…The Whole Truth…

OK, so you have found your Dream Doc. Now what? You are in the honeymoon phase and you undoubtedly want him/her to like you as much as you like them. To some of us that means not telling the whole truth or even outright lying about ourselves. Depending on the size of the lie, it can cost the relationship. The biggest lie I tell my husband is the fat content of the mayonnaise and sour cream. I have been washing old full fat containers for years, and dumping in light. My husband was none the wiser for EVER until I got tired of doing it and just told him. Then he pouted, and I started doing it again. My big reason for lying is to protect his heart, and avoid conflict. I never lie to my doctor, and I’ll tell you why.

My grandmother died of lung cancer. She had COPD for years, and with yellow fingers and reeking of smoke, swore to her doctor that she quit as soon as she was diagnosed. She didn’t want to be judged by her doctor and she was ashamed that she couldn’t follow his orders. The problem is, that most doctors forget about the last patient as soon as they walk into the next exam room. He wasn’t going home and telling his friends and family about his model patient who quit smoking. Had she told him the truth, he wouldn’t have complained to everyone he saw about his awful smoking patient. He would not have told her to find a new doctor.

Lying to your doctor is a bad idea for a bunch of reasons:

1. It can impact your care. Doctors come to a diagnosis based on information you give them. They perform tests, and labs to back up your complaints. If you lie, then they could order tests you don’t need which is adding to the rising cost of healthcare for everyone. If they give you orders that you don’t follow, they order more tests, give you different medicines which perpetuates the cycle. It also wastes your time and your doctor’s time.

2. It makes them not trust you, or anyone else. They even learn in medical school that we are all liars until proven honest. This makes building relationships with your doctor difficult, because it is so one sided. It is their job to treat you; it is your body and life in their hands. This makes them less invested in the relationship than you are, and they are guaranteed not to get hurt. Can you say the same?

3. It makes you typical and forgettable. Doctors don’t judge you based your answers to their questions, and usually they find honesty refreshing. If you come clean about compliance issues or lifestyle issues, it makes you memorable and could make your doctor more invested in your care. If you are struggling with diet, or meds, or smoking or something, tell your doctor. It is their job to help you bulldoze the obstacles.

4. It gives you reason to feel bad about yourself. Kindergarten lesson, we feel bad when we lie.

5. It could keep you sick longer than you have to be sick. Who wants to be sick longer? (I actually know a couple of people who do, and that is just sad.)

We all want to put our best foot forward to people we want to impress. When we are trying to hook a partner, we tend to hide our less attractive traits. Just keep in mind that your doctor is a sure thing. I waited until I knew my husband was in love with me before I told him about some of my crazy family members. If you want your doctor to be in it for the long haul, you have to tell him/her about crazy uncle Henry on the first date.

Imagine the most embarrassing thing you could tell your doctor and remember that they see weird stuff all day. What’s the weirdest thing you’ve seen at the doc’s office? Once I sat next to a guy who told me he was an ex CIA agent who was getting a colonoscopy because Persian Gulf pirates put a tracking device in his food that was implanted in his intestines. Would I lie?

*Title and content property of Danielle LaBare. If you write a blog about living with chronic illness that has a lot of followers, you should be original and come up with your own content, or find another career.

Friday, October 22, 2010

Doctor Dating

Have you ever had a great experience with a doctor? How about an awful one? We remember the bad ones more easily than the good. I had a doctor once who would tell me that I was depressed every time I saw him complaining of fatigue and anemia. He knew I had Crohn’s but it was always depression. Until I lost 100 pounds, then he started taking me seriously. My point is, that doctors are people. They are flawed, and not all doctors are right for all people. The sad part is, that because doctors are who they are, I may have accepted his depression diagnosis without question. I’m lucky to have enough personal and professional experience to question doctor’s opinions when I have doubts.

When I was young, I put doctors on a pedestal. A lot of us do, we think doctors are superhuman, infallible. They are not. When I got sick, I didn’t think about forever. I wasn’t thinking that I would be diagnosed with a disease that would force me into long-term relationships with medical professionals. But, that is exactly what happened.

Choosing a doctor is a lot like choosing a romantic partner. This person will know intimate details about your life, and you are buying THEM dinner. I often joke that my own doctor should have vanity plates on his car that say “Thanks, Dani.” Because you are thrust into an intimate relationship immediately, it is important that you trust your doctor. Make a checklist of things that are important to you in this partnership, like board certification, specialty, personality, office staff or hospital privileges. If you have an insurance carrier, you can call them and talk to them about your doctor’s qualifications. I chose a specialist in the area of gastroenterology since I have a GI disease. He wasn’t the first, either. What was important to me was to have a proactive talented physician, who works collaboratively with his/her patients. Also, that he has a compassionate nurse and staff that is responsive. I am getting exactly what I want from the relationship. I am a researcher, and I am methodical about my care, but I never forget that I am not a doctor and I never forget that he went to school for a long time and I should listen to him when he talks. He doesn’t forget that it is my body, and I have the final say about what goes into it, or when it is cut open. I get the impression that he likes that I am involved in my care. There are a lot of doctors who think that my level of involvement is telling them how to do their job. My doctor understands that is not the case. So, he “gets” me.

I am not you, and what is important to me may not be important to you. I know a WONDERFUL person who sees a doctor in the same clinic as me. This doctor is brilliant, and an expert in IBD. He and I are not compatible. He makes her feel safe, taken care of and keeps her out of the pokey (or hospital.) He cares about her case the way my doctor cares about my case. He directs her care the way she needs him to, but he’s just not for me. That doesn’t mean he is better or worse than my doctor, he is just better for her, like any intimate relationship. I’m not for everyone, but I’m perfect for my husband. He thinks I am great. I have been with a few men who don’t share the same opinion of me as my husband (bummer for them!)

When you are faced with choosing a medical partner, don’t be afraid to end the relationship if it is not working for you. I would bet that chances are, the doctor will hardly notice. They have a lot of patients, and if it isn’t working for you, it may not be working for them either. I am happy to have found my medical partner, and we can explore how to build relationship on another day.

In the meantime, are there any doctor stories you would like to share? Once I talked a doctor in an urgent care center into performing surgery on me in the office without any sort of numbing or sedative because I didn’t have health insurance. I still can’t believe he did it, and I screamed so loud that I’m sure I scared off the entire waiting room! It was pretty traumatic, and stupid in hindsight!

Thursday, October 21, 2010

Be Who You Are

I would like to introduce myself. I am Dani, and I have Crohn's Disease. I have had the disease for years, and I am the only Crohn's patient I know who never goes into remission. You may ask what is Crohn's Disease<----that link will tell you everything you would like to know. Most Crohn's patients go through periods of flare and remission. Flare is when the disease is active and they have all of the fun stuff to deal with. Remission is periods of health as if they didn't have the disease. The only time I have been in remission in ten years is when I was pregnant with my son. I have learned a lot in the past ten years, and I have met some wonderful people along the way. People I never would have met if not for Crohn's. At one point my doctor (who is a huge supporter of mine) told me that I should share some of my knowledge with other people like me. I almost always do what he says, so I thought...OK, why not?

People frequently say to me "You look great," as if to imply that appearance and illness are related. Once, in the hospital a gentleman escorting me to my room said "you look fine, are you here for a rest?" I think that is really funny, because anyone who has ever spent time in the hospital will tell you that it is no place for a rest. Hospitals are the least restful places on the planet. I may not look sick, but that doesn't mean that I am not. Looks aside. Something else I get a lot is; "you're so smily and happy, you must feel really good!" Here's how I feel about that. I get this one and only life to live. I didn't choose Crohn's Disease. No sick person chooses to be sick. I have no control over that. I do have control over how I react to having an incurable disease. I am sick every day. I'm dehydrated to the point where my muscles shut down, I go number 2 at the same rate that most people go number 1. I hurt, and I'm always tired. I have other symptoms that would make anyone cringe. I can't control those things. I can choose to focus on the wonderful blessings I have in my life. My beautiful little boy, my loving husband, my gracious friends and family. The roof over my head and the great love in my life.

I struggled with people taking me seriously for a long time. Then I realized that it doesn't matter if anyone realizes how sick I am. My doctor knows the severity of my condition, I don't exaggerate anything to him, but I am thorough in describing my symptoms. The wonderful team of researchers who have even followed up with me from their vacations know. My husband and best friends know. The people helping me. I am not going to "act" as sick as I am. If I did, no one would want to be around me. I am going to continue to have a smile on my face if I want to smile. Sometimes I want to cry, and I do, but I refuse to be someone who people avoid, or are afraid to ask how I am, because they already know the answer. I am who I am, and I am a person living with challenges. We all are, sick or healthy. The difference between all of us is how we handle them.