News, articles, resources and more for the person with Crohn’s Disease.

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Many thanks!

In This Issue.....

1. A Powerful Medical Tool is Making a Difference in the Lives of Patients With Crohn's Disease.
2. Interview - Kimi (rebelsgirl) - owner of Crohn’s Sanity Forum.
3. The importance of humor in our lives

1. A Powerful Medical Tool is Making a Difference in the Lives of Patients With Crohn's Disease.

Would you swallow a capsule that is blinking back at you? That's what confronted Sheryl Flanagan and yes, she did just that. And she is glad she did.

What is this blinking capsule? It's a pill with a camera inside that a person swallows with water. Why? So his or her physician will be able to see the entire length of the intestines. This is something that cannot be done through older procedures like colonoscopy. And hopefully, this in turn, will help them determine why the patient is having symptoms like diarrhea, Anemia, bleeding, and pain.

In a minute, you will be able to read the interview I did with Sheryl. But first, some information about Capsule Endoscopy.

Capsule Endoscopy is a procedure used to examine the entire length of the digestive tract (Colonoscopy can examine only a small portion of the tract).

The patient swallows a small capsule which includes a video camera. The capsule passes easily through the digestive tract taking color pictures as it travels. The patient meanwhile goes about their life’s activities just as they normally would (although before the procedure, the patient has to fast for 10 hours). They can’t do strenuous activity. Then pictures are taken for eight hours.

The pictures are then downloaded from the data recorder attached to the patient into a workstation from which the doctor can review what happened during the procedure.

Here’s a link where you can see what the capsule looks like. Click here.

One drawback to the procedure is there is no way to do a biopsy. So if something is found, further procedures are necessary. But, thanks to this tool, doctors now have a better idea as to where the biopsy needs to be done and what to expect.

Now here is the interview with Sheryl Flanagan:

First, Sheryl, tell us your Crohn's story.

I was diagnosed with ulcerative colitis back in 2000. Over the years I went through my share up flare-ups. I was hospitalized twice. My last hospital visit was July of last year. I was real sick this time. I lost 20 lbs. in 2 weeks. On intravenous steroids for 1 week. This is when they told me I had Crohns Disease. I wasn’t responding to this treatment. My GI put me on remicade. I also take 6MP. I'm now off remicade. Which really was my savior. I also switched GI's and have a great one now. He explains everything. I have 3 small children and cannot keep making trips to the hospital. They get so upset as do I.

Tell us about the procedure:

I had some concerns at first swallowing a capsule that was actually blinking. But it was fine. Then they hook you up to the device which stores the pictures. My one year old son loved all those wires!! The preparation wasn't bad. You fast at 12:00pm the day before. And take 4 Duclocax laxatives. You can't eat after midnight the day before. The morning of you still can't eat. You are allowed to eat 4 hours after you take the capsule.

What did the procedure show?

I feel this procedure helped to see where the Crohns was. It was not in my small intestine. And the procedure showed I was in full remission.

Would you recommend someone else having the procedure done?

I think if someone's GI is considering this test they should have it done. It really was quite helpful in pinpointing the exact spots. It is much better than a colonoscopy!!!

For Sheryl, like some other patients, relief comes when nothing is found. For others, it can mean a change in how the doctors manage the way they are dealing with the disease. Here’s a link to a study that showed how some patient’s method of dealing with the disease stayed the same while other patients had their methods changed. The title of the article is Initial experience with capsule endoscopy at a major referral hospital. Click here.

Right now, Capsule Endoscopy is expensive. Hopefully the price will come down as more and more patients have the procedure performed.

Has this article given you some information that can be helpful? I hope so.

2. An Interview with Kimi (rebelsgirl), Owner of Sunshines Sanity Forum

Have you ever wondered why someone would go to the trouble, expense and time of starting and then updating a forum? I did. So I interviewed the owner of Crohn’s Sanity Forum. To go to her site, Click here.

Kimi (rebelsgirl) was nice enough to answer some questions.

First, Kimi, tell us your Crohn’s story.

I found out I had crohn's in 1988. I had been working for a defense contractor, and had just gotten engaged to be married. For about a year, I was having horrible cramping pains that would send me into a fetal position, no matter where I was. I went to doctors almost every week for these cramps. They told me I had diverticulitis, spastic colon, and when they couldn't make them go away, it was all in my head and they put me on antidepressants.

The cramping got worse till New Years Eve of 1988, I went into the emergency room thinking my appendix had busted. For four hours before I decided to go, I didn't urinate, or have a bowel movement. Little did I Know my intestines had perforated. And I had peritonitis.

When I got to the hospital about 5pm they did all the tests they could think of and then decided to do an exploratory surgery around midnight. (thank goodness for that, because my new insurance kicked in and paid for it all!).

They ended up taking 18 inches of my intestines, my ileum and my appendix since it was wrapped around my intestines. I woke up with a very sore tummy. They had cut me from almost from my breast bone down to my pelvic bone. since my bowels had ruptured, they had to leave it open for a week to let it drain from the peritonitis. It was very serious and very scary. I would never want to go through that again.

Since then I have had an abscess on my rectum. They had to cut out a gland that was infected and I haven't had a problem with that in a long time.

About the only problem I have now that is related to crohn's is iritis. That is something you have to see an eye specialist about if you suspect you have it. It's very serious.

I am med free as of now except anti-anxiety meds. The doctors found out after putting me on asacol, pentasa and imuran, that I had adverse reactions that were doing more harm than good. I have been on prednisone for years at a time, but am no longer taking it either.

Right now I am doing well. No symptoms of crohn's except for the diarrhea I have had since my surgery.

Why did you start your forum?

I started Sunshines Sanity when I finally got on the internet and found out how many people had Crohn's. I thought for a long time I was the only one. I also found in other crohn's clubs that they focused so much on the illness (which is ok) but sometimes I found the clubs I visited a little depressing, not allowing humor at all or posts about our daily lives. I think humor and smiling, laughing at ourselves is a good way to get through this disease. I like to see people happy and I have found out through our club that even though people are having such a horrible time, they always want a reason to smile and laugh and I think they find that at Sunshines! I just wanted to help people and hopefully I have accomplished that at Sunshines.

What advice would you give someone just diagnosed with Crohn’s Disease?

Oh gosh, what advice would I give to newly diagnosed? Well, RESEARCH RESEARCH RESEARCH! Keep looking for knowledge! Always research your meds, your symptoms, talk to others that have Crohn's. Even though Crohn's manifests itself different in each person, it's always good to talk to someone who has gone through it. Also, watch out for scams. Cure all scams are all over the place. Do your research. Keep an open discussion between you and your doctor. If you don't feel you're getting the care you need from your doctor, find another one and make sure you have a GREAT GI! Ask questions. There are NEVER dumb questions when it comes to Crohn's. And also it's good to make sure your whole family understands what you are going through. Get them pamphlets. Don't keep your disease a secret from them, or how you're feeling. And don't feel guilty when you can't do things you used to do.

When you have a flare-up, are there certain things you do to help yourself? What are they?

When I end up having a flare, I find that the only thing I can do is rest. Don't try to do things you just know you NEED to do. You DON'T need to do them. They will be there when you get better. Rest and get your strength back and you will be grateful you did. If you rest, I believe you will get over the flare faster. If you do too much when you're flaring, it will only prolong the flare. First and foremost, call your GI and get in to be seen, then follow whatever directions and meds he gives you. That will help the most along with the rest.

Since stress aggravates the symptoms of Crohn’s Disease, What do you do to reduce the stress in your life?

I have not learned to reduce the stress in my life. And that's the truth. But I have TRIED to learn this.. "Don't sweat the small stuff" and "anything you have to do today can wait till tomorrow." It helps sometimes. I just try to keep in the back of my mind that I need to take care of myself and to try to not take things so seriously that the make me sick. I stay away from people and places that don't make me comfortable. I try to stay in my comfort zone and I find it works well for me. Also my family is wonderful. If I'm not feeling up to things, they take up the slack. I don't know where I'd be if not for my family.

Is there anything else you’d like to share with our readers?

I would like to share that you are NOT alone. There are so many forums out there, so many people who would love to share with you, and help you get through this. I have found that Crohnnies are some of the most compassionate people, the most understanding people I have met and you will find comfort in them and they in you.

Thanks for giving me a chance to share!
Kimi (rebelsgirl)

To see Kimi’s website and forum, Click here.

3. The importance of humor in our lives

Humor does so much for the body. Did you know that laughter reduces pain by releasing endorphins in the body. Endorphins are the body’s natural painkiller. It also reduces your level of stress by lowering the level of Cortisol, a hormone that has a lot to do with stress levels and the immune system.

So here is something to help reduce pain and lower your stress level. A friend of mine faxed me something I think is quite funny. I hope you like it.

They're Back! Church Bulletins:

Thank God for church ladies with typewriters. These sentences actually appeared in church bulletins or were announced in church services:

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The Fasting & Prayer Conference includes meals.

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The sermon this morning: "Jesus Walks on the Water."

The sermon tonight:"Searching for Jesus."

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Our youth basketball team is back in action Wednesday at 8 PM in the recreation hall. Come out and watch us kill Christ the King.

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Ladies, don't forget the rummage sale. It's a chance to get rid of those things not worth keeping around the house. Don't forget your husbands.

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The peacemaking meeting scheduled for today has been canceled due to a conflict.

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Remember in prayer the many who are sick of our community. Smile at someone who is hard to love. Say "Hell" to someone who doesn't care much about you.

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Don't let worry kill you off - let the Church help.

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Miss Charlene Mason sang "I will not pass this way again," giving obvious pleasure to the congregation.

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For those of you who have children and don't know it, we have a nursery down stairs.

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Next Thursday there will be tryouts for the choir. They need all the help they can get.

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Barbara remains in the hospital and needs blood donors for more transfusions. She is also having trouble sleeping and requests tapes of Pastor Jack's sermons.

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The Rector will preach his farewell message after which the choir will sing: "Break Forth Into Joy."

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Irving Benson and Jessie Carter were married on October 24 in the church. So ends a friendship that began in their school days.

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A bean supper will be held on Tuesday evening in the church hall. Music will follow.

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At the evening service tonight, the sermon topic will be "What Is Hell?" Come early and listen to our choir practice.

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Eight new choir robes are currently needed due to the addition of several new members and to the deterioration of some older ones.

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Scouts are saving aluminum cans, bottles and other items to be recycled. Proceeds will be used to cripple children.

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Please place your donation in the envelope along with the deceased person you want remembered.

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The church will host an evening of fine dining, super entertainment and gracious hostility.

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Potluck supper Sunday at 5:00 PM - prayer and medication to follow.

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The ladies of the Church have cast off clothing of every kind. They may be seen in the basement on Friday afternoon.

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This evening at 7 PM there will be a hymn singing in the park across from the Church. Bring a blanket and come prepared to sin.

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Ladies Bible Study will be held Thursday morning at 10 AM. All ladies are invited to lunch in the Fellowship Hall after the B. S. is done.

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The pastor would appreciate it if the ladies of the congregation would lend him their electric girdles for the pancake breakfast next Sunday.

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Low Self Esteem Support Group will meet Thursday at 7PM. Please use the back door.

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The eighth-graders will be presenting Shakespeare's Hamlet in the Church basement Friday at 7 PM. The congregation is invited to attend this tragedy.

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Weight Watchers will meet at 7 PM at the First Presbyterian Church. Please use large double door at the side entrance.

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The Associate Minister unveiled the church's new tithing campaign slogan last Sunday: "I Upped My Pledge - Up Yours "

I hope you got some good laughs. I know I did.

Finally

If you haven’t gotten the free diet journal I offer from the website, click here

If you’d like to tell your Crohn’s story and have it on the website, click here

I want to include the quote you will find on many of the pages on my website. I believe if you will develop the skill of putting this quote into practice, it will help you immensely in reducing the stress you feel from life and the disease. Here’s the quote:

God, grant me the serenity to accept the things I cannot change,
Courage to change the things I can,
Wisdom to know the difference.

I wish you all the best.

Till next time,

Ed Kalski

Health Disclaimer: The information on this site is provided for information only and supplied “as is.” It is NOT intended to substitute for the services of a licensed health care provider in the diagnosis or treatment of Crohn’s Disease or any other disease, condition, or injury.