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The Crohn's Disease and Stress E-Zine, Issue #004
April 18, 2005

News, articles, resources and more for the person with Crohnís Disease.

The Crohnís Disease and Stress newsletter brings you information you can use to help you, or someone you know, cope with Crohnís Disease.

I want you to know that I appreciate your interest in receiving this information, and I promise you that I will endeavor to make it worth your time, both now and in the future.

If you enjoy this monthís edition and find it valuable, then I would appreciate it if you would forward it to other people you know who have Crohnís Disease or are the family or friends of someone with the disease. If they would like to subscribe, have them send an email to

subscribe@crohns-disease-and-stress.com

Many thanks!





In This Issue.....

1. A free service to help you reduce your stress.
2. Can the drug Humira help you with Crohn's Disease?
3. The importance of humor in our lives


1. Good News! Announing a new service to help you reduce stress. And best of all... it's FREE.

Iíve been looking for a service I could offer visitors to my website that would help them reduce their stress and not cost them anything. I found it.

Have you ever forgotten to do something important because life got in the way and your mind was on something else. Of course you have. We all have. Well Iíve made it so you can have your own personal secretary remind you in advance on anything going on in your life.

I bought a website called TheReminderKing. You never have to forget anything again. And the good news is the service is absolutely free. Youíll have to subscribe to the service, but just like this newsletter, you will receive no correspondence and noÖ well, nothing.

Iím not going to explain it anymore in this newsletter. You can read about it on my website. Hereís a link:

http://www.crohns-disease-and-stress.com/reminder.html

If you canít click on the link above copy it and paste it into your browser.

I hope you like the service and put it to use. Iíve been using it and it puts my mind at rest knowing Iím going to automatically be reminded on anything I want to be reminded about.

2. Can the drug Humira help you with Crohn's Disease?

If you are taking Remicade to help you deal with Crohnís Disease, you also need to know about Humira.

Humira, like Remicade, is a drug that was developed to help people with Rheumatoid Arthritis. But Arthritis and Crohnís Disease have something in common - inflammation.

So itís no surprise that Remicade was also been proven to reduce the signs and symptoms of Crohnís Disease. In addition, it also induces and maintains remission in patients with moderate to severe Crohnís Disease. It has also been shown to reduce the number of draining rectovaginal fistulas, and maintain fistula closure.

So it makes sense that people with Crohnís Disease might benefit from Humira as well. Many do. Generally a person will go on Humira because they cannot tolerate Remicade or are no longer befitting from Remicade.

In this article, I interview a person who took Remicade, but now is taking Humira. She posts regularly to the HealingWell.com forum for Crohnís Disease (her username is Betagirl). I hope you will find it very enlightening. I sure did.

First, tell us your Crohn's Story.

I was diagnosed with Crohn's disease initially in May of 2002 after a normal colonoscopy and abnormal small bowel follow through, showing ulceration and bowel wall thickening in about 6 inches of my intestines. I'd had what I thought was a "nervous stomach" that I never went to the doctor for since high school. I'd also had weird joint pains in my legs, but again never went to the doctor. I was the type that usually didn't get sick and never took medication. Boy did my life change :) My major symptoms hit me pretty fast, and I had quite a bit of bleeding. This is what sent me to my primary care physician. I started going to the bathroom 15+ times a day, and the lower right quadrant pain started. My first GI put me on pentasa, which didn't really do anything. He then switched me to entocort after 6 weeks, which gave me high blood pressure and bad headaches. It worked ok on the Crohn's, but the side effects were too much so he took me off of it. Because I wasn't responding to the medications and was having fevers, he did a CT scan that was read as normal. This is when my diagnosis started to go into question. He repeated the SBFT and colonoscopy, each coming back with the same results as the first - abnormal SBFT and normal scope. Not feeling comfortable with going to the next line of treatment for me, my first GI withdrew the Crohn's diagnosis and I became this enigma for about 10 months. I went through various tests that came back with various results. My blood work was normal most of the time. I had low vitamin B12 consistently, so was given shots. My ESR would only be elevated sometimes. I was losing weight, but not dramatically. I did the Prometheus first step test which came back positive for elevated pANCA, and at this point I asked to be referred to the IBD doctor in the group practice. Nothing against my first GI, but he was spinning his wheels and I was losing my sanity and not getting better. It was during all this testing and questioning I began to develop what I'd later find out to be my first perianal fistula. When I changed to my current GI, he said I had some sort of inflammatory disease, he just didn't know what and was hesitant to confirm the diagnosis and put me on stronger medication. By this point I'd lost about 30 lbs, my vitamin B12 was around 100, and I was having pretty decent pains. He repeated the CT scan, which came back abnormal. Shortly after, the fistula showed up and my diagnosis was re-confirmed. I had a fistulotomy about a week later because of the rather large abscess that was there with the fistula, and was put on Imuran and Flagyl. About 6 weeks later I started Remicade, and it worked great. I saw results after the first infusion, and even better impact after the 2nd. I was put on the 0,2,6,8 schedule. After my 2nd infusion, I noticed some strange joint pains in my shoulders, elbows and wrists. My normal CD joint pains were in my hips and knees only, and this was different. I talked to my GI who decided to pre-treat me before my 3rd infusion with Prednisone in addition to benedryl and tylenol. Unfortunately it didn't prevent me from having a full infusion reaction about 30 minutes into it. I developed a rash, fever and shortness of breath. They stopped the infusion, shot me up with steroids and watched me for about 45 minutes. We decided to restart the infusion, and I was able to tolerate the remicade only at the absolute slowest rate. Any time the nurse increased the speed, I'd start to react. So my 3rd infusion took me 9 hours to finish. I was put on Prednisone for a week afterwards to help with the joint pain. My GI consulted with a rheumatologist about if I should go for infusion #4, and the decision was to stop using Remicade, which was disappointing because it really helped with the crohn's symptoms. I had heard about Humira and asked my GI about it. One of the hospitals in the area was doing a clinical trial, so I was accepted. I remained in the trial for about 6 months, where I saw significant improvement after the loading dose and relapsed a bit when I went into the "blind" part of the trial. I was put in the open arm, where I received Humira every other week. Unfortunately I developed another fistula, this time a recto-vaginal fistula. My GI wanted me to go to 40mg of Humira a week to try to close it, but the clinical trial powers that be at Abbott Labs declined my request to go into the weekly open arm. It was then I was able to get insurance coverage for Humira and withdrew from the trial. I've been on Humira about a year, including my time in the clinical trial. The crohn's is pretty well under control, and I think I'm on the right combination of meds that don't give me crazy side effects. I currently take Humira, 6mp, Prevacid and OscalD for osteopenia.

Why did your doctor put you on Humira?

Because I have fistulizing disease and responded well to remicade.

What has your experience been with the drug?

Overall Humira has worked very well for me, without the side effects of Remicade. I also find giving myself a shot at home versus having to go in for an infusion much more convenient. I have been on 40mg a week, and as much as 80mg every other week when trying to close the fistula and get the Crohnís Disease under control. It was at 80mg that I started to notice some weird side effects, similar to the joint pains I got from Remicade. My GI has since cut me back to 40 mg every other week, where it seems to be holding my symptoms under control (knock on wood). I give myself the shot in my thigh. The drug burns quite a bit, but you get used to giving yourself shots. Sometimes it makes me a little tired the day after, but overall I have no side effects from it. My RVF is closed and I rarely have diarrhea or lower right quandrant pain. I still have a bad day here or there, I'd say about once every 10 days. But that's more a function of what I eat :) I'm able to eat things I couldn't eat before Humira, including popcorn without much problems. It is expensive, a box that contains 2 syringes is about $2500. My copay from my insurance is $75 a month, so for me that's manageable. I've thought about going off of it now that I'm feeling pretty well, because it is a new medication and the long term effects aren't known. But for now, I'm staying on it.

Is there anything else you'd like to share?

I'm a bit of a "suzie side effects" when it comes to medication, so I've been a challenge to my GI. In addition to the remicade and entocort problems, I've gotten peripheral neuropathy from flagyl and got severely ill from being on Cipro for months. Imuran made my hair fall out and gave me nausea. 6MP has been ok to date. So I'm thrilled that Humira isn't giving me problems AND it's working to boot.

Finally, I've learned that for me coping with Crohn's is all about attitude and keeping a sense of humor. Some people I know would say I'm an overachiever, and from what I can tell a lot of Crohnie's are. But I haven't let all of this slow my life down too much, and it's motivated me to do more with my life in terms of reaching my goals and being more aware of the good I have in my life. If I could have one thing for my fellow Crohn's sufferers it would be that they too could live their lives as fully as possible, and maybe laugh at their situation now and then. I hate it when I see that Crohnís Disease has taken over someone's life and is causing such suffering. So if they can, look to those little things that Crohnís Disease can't take from you and make them your focus whenever possible.

Thanks Betagirl.

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 bodyís 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.

Here it is:

Winter was approaching. On an Indian reservation, the tribe went to their leader and asked if the winter would be very cold. The wise old chief had noticed the squirrels gathering nuts for the winter earlier than normal. He said, ďYes, it will be a cold winter. Go gather wood now.Ē

The tribe went out and gathered wood to burn during the winter.

The chief thought to himself that it would probably be a good idea to get more proof of what he thought, so he called the local weatherman in a neighboring city. He asked the weatherman if he thought it was going to be a cold winter. The weatherman said yes, ďIt will be a very cold winter.Ē

The chief's tribe came to him a few days later and asked if he thought the winter would be unusually cold. The chief said yes, it will be especially cold this winter. Go out and collect more wood.

A couple days later, the chief decided to call the weatherman and asked him if it was going to be unusually cold this winter. The weatherman said yes, it was going to be especially cold.

The chief heard this and called the tribe together and told them that the winter will be extremely cold and to go gather more wood. They did.

A few days later, the chief called the weatherman and asked just how cold he expected the winter to be.

The weatherman said it would be one of the coldest winters in history. The chief asked him how he knew this. The weatherman said, ďIíve got all kinds of equipment showing it is going to be very cold. But Iíll tell you a little secret as too how I know it is going to be an especially cold winter.Ē

The chief was all ears.

The weatherman said, ďI know it will be especially cold because I have noticed that the Indians in this region are gathering more wood for their fires than I have ever seen before."

I hope you got a good laugh. I know I did.

Finally

If you havenít gotten the free diet journal I offer from the website, click here

If youíd like to tell your Crohnís 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. Hereís 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 ďas is.Ē It is NOT intended to substitute for the services of a licensed health care provider in the diagnosis or treatment of Crohnís Disease or any other disease, condition, or injury.

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