The Crohn’sAdvocate(TM) Online Forum is still open for Registration for Tonights Forum

I just received an email from Crohn’s Advocate offering an online forum, check it out, pass it on to others who could benefit. I’ve enjoyed getting my Crohn’s Advocate free magazine, it’s filled with information that has helped me over the years. They offer patient resources, information about health care professionals, important safety information, information about CIMZIA and it’s side effects, support and encouragement. It provides a safe place to ask the hard questions.

Tonight’s Event Details includes:
Crohn’sAdvocate Share Your Story

Hear patients share their experiences, and chat online with featured experts.

Everyone is invited to take part in a series of live forums for the Crohn’s community. Our first forum takes place Thursday October 7, 2010 at 7:00PM (Eastern) and 9:00PM (Eastern). During these live webcasts, you’ll hear from Crohn’s patients and have the chance to chat with our featured speakers and patients.

Thursday, October 7, 2010
7:00PM (Eastern) and 9:00PM (Eastern).

Speakers Include:

* Tamara Duker Freuman, M.S., R.D., C.D.N. – A registered dietician who will address the unique dietary concerns of Crohn’s patients and offer helpful advice for finding balance in your diet
* Brett Cavalli – A featured Crohn’s patient who will share his inspirational story of learning to live with the disease

This is an interactive forum featuring a dietitian and foodie with Crohn’s. Don’t miss this incredible FREE opportunity to learn more about the connection between nutrition and Crohn’s. You’ll be able to ask questions live and anonymously—from the comfort of your own home!

If you miss tonight’s event there’s another forum coming up on November 16th. Featured Topic: A clinical psychology post-doctoral fellow and Crohn’s patient discusses overcoming the emotional challenges of living with Crohn’s disease.

Advocacy for Patients with Chronic Illness, Inc.

I was diagnosed with Crohn’s disease in 2001 at the age of 38. After a constant battle, several surgeries, 18 blood transfusions, and more medications than I can remember. I’ve experienced events that will haunt me forever. My disease has taken my life hostage, twisted it, making each day a constant battle just to survive; every day is a new challenge. I’ve lost everything from my job, my home, my medical insurance, life as I knew it and everything that meant anything. Suffering from severe complications and side effects while fighting for my rights to Social Security Insurance and Disability Insurance… this is what my life has become. Finding help and answers has been very difficult. Your help in Supporting Advocacy for Patients with Chronic Illness, Inc. would help me and others like me suffering from these same experiences. Thank you for your, Love Hugs and Prayers to all of you♥

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What The Bleep Is Crohn’s Disease?

What The Bleep Is Crohn’s Disease?

The CCFA describes it as: A chronic (ongoing) disorder that causes inflammation of the digestive or gastrointestinal (GI) tract. Although it can involve any area of the GI tract from the mouth to the anus, it most commonly affects the small intestine and/or colon.

Named after Dr. Burrill B. Crohn. In 1932, Dr. Crohn and two colleagues, Dr. Leon Ginzburg and Dr. Gordon D. Oppenheimer, published a paper describing what is known today as Crohn’s disease. Crohn’s is related to ulcerative colitis which is also called inflammatory bowel disease (IBD).

You can find all the information you ever or never wanted to know about this disease that effects more people today than ever before at:  www.ccfa.org/info/about/crohns

But what you can’t find there is how it really affects your life when you’ve been graced by the hand of God to experience the humiliating, belittling, and degenerative disease that I along with many others have (over a million Americans to be exact).

Sure I can find all the technical and clinical explanations to make my face turn purple… but what I can’t seem to find is a support system that is truthful, and brutally honest, who truly understands what it’s like to live each and every day with a disease that is so temperamental, and constantly changing its rules…“I just wish there was someone, somewhere who could give me truthful and honest answer’s…”

OMG…. You’re thinking… I know her… is it contagious…  You’ll be happy to know it’s NOT…!

Is it something I would wish on my worst enemies (not that I have any)…  “No!  I wouldn’t even wish it on them.

Am I bitter for having the disease… some days! But mostly I try to stay positive, and know that someday there will be a cure, or relief, or that it will go into remission, or just plain disappear.

Do I blame God or my Mother or the generations before me in my family tree…?   The answer is “No!”   Even though they say it is hereditary.  Yet no one will admit to having it… it’s not one of those diseases that you go out and brag about or even admit to your best friend.  I know I’ve tried to hide it ever since becoming ill in 2000. I never really had any symptoms except maybe once when I was 13 and was hospitalized for a week for what they ended up calling nerves or attention getting… meaning they had no clue why I was doubling over in excruciating pain.

Is it easy to talk or write about…? That’s a joke!  Who wants to hear about how I barely made it to the toilet, or how I can’t go anywhere until I know I’ve cleaned my system out. Or how I can’t eat anything in the morning or until I know exactly where the next restroom will be, which is why my doctor said I eat like a sumo wrestler… consuming the bulk of their calories at night so they can pack on the pounds….and I wonder why I’m so fat.

Or who wants to hear why I can’t go to my friend’s wedding or birthday party or events because I don’t know where the next restroom will be or if I’ll be able to make it through the ceremony without having to run.  Do you think they want to hear how I can’t be in their wedding or plan their wedding shower for fear that I never know when I’ll have my next attack… can you imagine standing up at the altar for an hour long wedding ceremony and having an overwhelming feeling that you’re going to explode right there…right then, as the sweat beads up on my forehead, my body tightens,  doing whatever I can to not have an embarrassing moment…  So naturally I gracefully decline…even though I know it breaks their heart… how could I be so cold… what kind of friend am I anyway?  If they only knew how bad it makes me feel… how truly embarrassed I am, how sick it makes me that I can’t be normal like them.

Another issue I have is finding a clean bathroom. When I lived in Anchorage I had the state, yes… the state mapped out… I knew exactly where every bathroom was, how long it took me to get there, how close it was to the front door from the parking lot, and if it was clean… Not all bathrooms are equal… Note to anyone traveling to Alaska…. Stay away from the Mapco on Northern Lights and the Seward highway… my least favorite can of them all….

I use to joke that I could write a book purely on bathrooms, restroom, can’s, shitter’s, loo’s, Nettie’s, Privy or washrooms… Whatever name you want to call it…  Bathrooms are actually quite interesting… having spent the past 10 years in them more frequently then I’d like to admit. Can you imagine having to utilize a toilet like in parts of Europe or Asia… having to squat while having an explosive episode… not only would I be wearing it… so would the person next to me…. I don’t think I’ll be going there anytime soon; not to mention the 12 to 18 hour plane ride over there… I’m lucky I made it the 6 hours from Hawaii to the mainland.  And that’s only after I’ve taken eight to ten Imodium’s first, my new wonder drug.   I knew I should have bought stock in it’s maker… I guess it’s not to late… with one million Americans suffering from uncontrolled bouts of diarrhea…. McNeil might be a good one to invest in.

Why is Crohns so bad your thinking…? Hell with Imodium to control it…  I should be able to do just about anything?  Wrong! Taking too much or not enough Imodium is a fine line… Not enough…there are still accidents…  Too much… well you get the idea… either way I’m still miserable!  Not only do people with Crohn’s have to deal with the constant bouts of diarrhea… there I said it! They also have to worry about getting infections. Crohns disease has an abnormal response by the body’s immune system. The immune system is composed of various cells and proteins. Normally, these protect the body from infection. In people with Crohn’s disease, the immune system reacts inappropriately.  Therefore people like me get a lot sicker than your average Joe or Michele.  Am I losing you yet?

Researchers believe that the immune system mistakes microbes, such as bacteria that is normally found in the intestines, for foreign or invading substances (i.e.: food!), and launches an attack. In the process, the body sends white blood cells into the lining of the intestines, where they produce chronic inflammation. These cells then generate harmful products that ultimately lead to ulcerations and bowel injury (holes in the stomach lining also called fistulas). When this happens, the patient experiences the symptoms of IBD, in other words excruciating pain, embarrassing gas, bloating, and quick trips to the nearest restroom.

Although Crohn’s disease most commonly affects the end of the small intestine (the ileum) and the beginning of the large intestine (the colon), it may also involve any part of the GI tract, and I do mean any part being the key words here!  If any of you have ever had let’s say a canker sore in your mouth or let’s say a sore throat… you all know how bad that feels, how much pain you’re in, and what little can be done to ease the pain… Well, what if your sore throat or canker sore was not just localized, but went throughout your whole system… Yes, you’re getting the picture… from your mouth all the way down to your anus (asshole.) Kind of gives pain a new meaning doesn’t it?

The only way I know how to accurately describe how I feel 90% of the time is like… having battery acid poured down my throat… feeling it move though my intestinal track… settling in areas like my stomach, and ileum… I never even knew where my ileum was until they told me they were going to have to take it out, but that’s a whole other story…  To continue on… the acid moves through my colon…where I get so bloated from all the narrowing area of built up scar tissue…as it  passes through my colon, coming out my ass burning holes its entire way though.

I know some people who come out of a restroom…feel actually rested, relieved, and refreshed… which is where the term restroom originated from. But not I or anyone else with Crohn’s… Not only do I fear having to go in… but I never know how I’m going to feel coming out… Whether it’s going to be one of those times I’m praying to God to just take me home, or I’m sitting quietly hoping no one is paying attention to how long I’ve been sitting there, some times I’m in there for up to an hour trying to go, or cleaning myself up. God forbid I have to go to a public restroom,  screaming in pain tends to make people uncomfortable or scarred or on occasion laugh.  Knowing in advance that I’m most likely going to be making unpleasing noises, even though I know the person sitting next to me can’t see me, I’m still turning red out of embarrassment.  Either way which ever bathroom I find myself in I’m usually drenched from sweat… crying, and unable to walk until the cocaine cream sets in and numbs my bottom side.  … sometimes I apologize as I’m running in, trying to get my pants down and my underwear off and out of the minefield range before the explosion take place… I can’t even tell you how many of my underwear have ended up in the depths of the garbage can buried deep. The worst part is when you hear the giggles next door or others fleeing as they’re laughing on their way out, normally the young girls or groups of ladies… Hopefully they will never experience the the humiliation I do on a daily basis. What’s worse is when you know the people, or when their your co-workers, or people you see on a daily basis. When they see you coming they run or avoid you at all costs.

I can never quite understand why when taking a shit which everyone has to do daily is such a funny and laughable moment.  But I’m sure you feel like I feel… embarrassed if we fart out loud, let one slip, or have one of those inner toilet explosions which somehow seem amplified.  I’ve gotten pretty good at going in-between flushes… to lighten the sound effects.  I don’t dare let one rip without being close to a restroom… I never know what’s coming out whether It’s a little gas, or a dark chocolate surprise… I’m the only adult I know who carries wet wipes with her at all times… and it’s been years since I’ve had a baby around.

I can’t tell you how many times I’ve heard someone on the other side of the stall wall having a similar situation… I want to tell them it’s OK, I understand… go ahead let it rip! Yet I say nothing… I definitely don’t laugh, giggle, or run out plugging my nose.  And it’s not even the little girls doing the giggling… it’s mostly the young women who are there with their girlfriends… You know the ones that think their shit don’t stink… or they would never do something like that… Wait until Crohn’s sets into their body… only then will they know how we feel.

So there you have it… my definition of Crohn’s… I’m hoping that I can help lighten the mood, help others to understand how we feel, and what living with Crohn’s is like. I hope this will be a safe place to share your stories, ask questions, and be a sounding board for others who are experiencing the same un-chosen lifestyle of living with Crohn’s disease.  We are not some leper who needs to be shunned… We are just like the rest of you, we all have to shit… some just more than others. So the next time you hear someone next to you having a rough time…maybe you could offer a little compassion, a smile, or think about the time you had diarrhea…or when it will happen next, believe me… you too will have it sometime or another, it’s just a matter of when.

Here’s a little poem I wrote while sitting in my office… that’s what I call my bathroom, it’s better then calling it the shitter,can or restroom … besides I’ve had more creative ideas while spending hours upon hours on the worlds most uncomfortable hard seat… maybe some of you can relate…

Make Way

Running,

Holding my breath,

Try to think of something else.

Get out of my way!

Please God, make them move.

I can’t hold it.

Just a few more feet,

You can do it.

Your there, your safe,

Empty.

No embarrassing moments today.

Breathe!

Next Entry I’ll talk about medications…and how I cope…or hope! Please if you have any stories, insights, or helpful tips, medications successes or failures, or information about Crohn’s to share… please do so…

Your thoughts, ideas and comments are always welcome without judgment! If you don’t have anything nice to say or share… then take my grandma’s advise… Don’t.

Peace, Love and light,

Michele

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