Monday, July 20, 2009

Dieting

He sits down the the ice cream parlor with his family, the little girl licking the twist cone, getting it all over her face. His wife lovingly asks if everything is alright
"Of course." he responds. But really he is wondering if this small ice cream cone will send his insides into a tail spin. He as he lifts the tiny sugar cone to his mouth he feels like a Kamikaze pilot. Such is life with Crohn's disease.

For those with the disease, it is diffuclt to know what is good and what is cause for a flare up.

With new diets and fads being released at all times, it is hard for someone with Crohn's Disease to know how to treat thier body when it comes to food. There is more advice out there than can seem humanly possible to follow. Below are listed websites that can help guide one though and find different diets that could possibly help to keep a number of Crohn's symptoms at bay

www.crohns-disease-and-stress.com/diet.html

www.webmd.com/ibd-crohns-disease/crohns-disease/creating-a-crohns-disease-diet-plan

http://ibdcrohns.about.com/od/dietandrecipes/Diet_and_Recipes_for_Crohns_Disease.htm

Through experience, the greatest advice would be to start a food diary. List what is eaten and when, including all ingredients then follow up with writing when symptoms and flare ups occur. When one can start to find links, try cutting items out of the diet and see if there is any marked improvement.

Said one Crohn's sufferer, "Taking responsiblity for my diet makes me feel in control of something that can often seem uncontrollable. I'm in charge of my body and I'm the expert."

Friday, June 12, 2009

Crohn's Scholarship winners

Recently, the winners of the annual Crohn's and Me scholarship were announced. 30 indivuals recieved scholarships in the amount of $10,000 to further academic goals while dealing with Crohn's disease.

For more information on this year's winners follow this link

This scholarship provides what I feel is an excellent benefit for those who strive to gain an education in the face of what can be a debilitating illness.

Many with Crohn's have been able to complete education in periods of remission, while others have either had to take semesters or even full years off in order to get thier disease under control in order to complete thier academic goals.

While not promoting any specific organization, I applaud thier scholarship and encouarge any of those who suffer from Crohn's to apply for this generous award. I only hope in the future there are more scholarships and opportunities for those with inflammatory diseases to recieve assistance with what can be an expensive disease. (For further treatment on expenses, see my post on patient assistance programs)

On the same note, many feel hesitant to mention thier Crohn's disease due to the somewhat private nature of the symptoms. This can be hard for those attending school, including younger children, but even in college some are wary of explaining to a teacher why one would need to leave class repeatedly, absences for doctors visits that rarely can fit nicely into a loaded academic schedule, or even for a flare up.

However, speaking out is the only way I feel to get awareness of Crohn's into a more mainstream understanding. Imagine being able to send an email to the professor the beginning of the semester simply stating "I have crohn's disease." and the instructor would be warmly accomdating.

I have been fortunate to have instructors who not only knew of the disease but knew someone who had gone through the same illness. I've found them to be understanding and even supportive of my needs. For that, I am truly grateful. I would encourge those of you attending school to not let crohn's keep you from getting all the education you desire but also to make instructors aware (when applicable) about possible needs.

As for me, I'm graduating in July and starting law school in August. Crohn's won't hold me back from education....

Wednesday, June 3, 2009

New law benefits Crohn's patients

A new law passed in Conneticut would allow people with specific medical issues to be granted access to employee bathrooms in retail stores.

Read full story here

The law, which passed in a large majority vote, allows patients the ability to use "employee only" restrooms at businesses.

Stipulations currently include that one would need to posess a written form from a doctor proving medical need. Additionaly, a buisness would not have to comply if there are less than 3 people on duty.

This stands as a great move for those with Crohn's and other IBD related issues.

Many retailers and convenience stores currently have restrooms which are access denied to the public.

Not all were in favor of the bill, with concerns relating to the potential liability that stores and business face with letting the public into private areas.

This law will greatly improve not only the ability of those suffering to find relief; but also help younger patients to avoid the embarassment of public denial of use of restroom and potential accidents, which can leave lasting effects on them. Many similar bills in other states have been spearheaded by young people who were denied access to a restroom during a flare and subsequently lead to public accidents.

Friday, May 29, 2009

New post surgery treatment findings

The American Gastroenterological Association, the leading expert in Crohn's and other intestinal diseases released news recently that drug therapy following surgery can greatly reduce the chance of reoccurring flare ups.

The studies have shown that using the drug infliximab has been found to be effective preventing the re-inflammation of the intestines that commonly can happen after surgery for many Crohn's patients.

Surgery, which is necessary for nearly 75% of those that suffer from Crohn's disease, is often hoped to be the final solution to the painful and in some cases debilitating chronic illness. However, as many patients sadly discover, this mysterious disease can reoccur in previously healthy areas of the colon and small intestine. This acts as a depressing set back to someone who has come so far.

This discovery offers a great hope to those with upcoming surgeries as well as post surgical Crohn's patients.

A press release from the AGA quoted Miguel Regueiro, MD, of the University of Pittsburgh Medical Center. "Our study provides strong evidence that infliximab is effective at preventing endoscopic, clinical and histological postoperative recurrence of Crohn's disease, and provides a rationale for aggressive postoperative chemoprevention with biologic therapy, We are encouraged by our findings, which warrant future study of the duration of post-operative infliximab maintenance and appropriate endoscopic follow up."

The study, which can be read on the website gives the following post-study information:

At one year, the rate of endoscopic recurrence was significantly lower in the infliximab group (9.1 percent) compared to the placebo group (84.6 percent). There was a non-significant higher proportion of patients in clinical remission in the infliximab group (80 percent) compared to the placebo group (53.8 percent). The histological recurrence rate at one year was significantly lower in the infliximab group (27.3 percent) compared to the placebo group (84.6 percent).

Even to the casual reader, 9 percent compared to 84 percent is a vast improvement. This represents nearly a complete difference in the quality of life someone coming out of surgery can expect to have.


From a personal perspective, this is a great advancement for someone who is going through this disease. Post surgery, my own Crohn's disease reoccurred within a few short month, which was nothing short of devastating. I was fortunate to have a treatment provider that stays current on recent developments and was able to start me on this particular regimen, which to date has greatly improved my quality of life.

Thursday, May 7, 2009

Patient assistance programs

With the recent economic times, money is short in many people's lives. With it being more and more difficult to afford medications, new additions to assistance programs for Crohn's disease warrant discussion.

Those of us with Crohn's disease have all quickly learned, it can be an expensive going through a flare or trying to maintain health during an off period.

I am confident that, if I had kept all the receipts that I have spent thousands of dollars (this is out of pocket not insurance) on medications, doctors visits, travel to and from clinics, as well as hospital stays and emergencies, not to mention the astronomical cost of surgery, which is the last (though sadly only) resort for those with severe cases of Crohn's.

With this in mind, it would be prudent to share with the general Crohn’s suffering public, programs that are out there to assist those with lower incomes that are dealing with this often debilitating disease.

In my own experience I have found these programs to be a life saver, in a very literal sense. I would encourage those who are eligible to put forth the time and effort necessary to apply, be approved and participate in these programs for the benefit of yourself and your family.

For some this might require a small amount of humility and willingness to be helped, as the process requires full disclosure of financial status that, to some, is of a personal sensitive nature. Remember, Crohn’s is a disease that can take all you have, and without help and support can be nearly impossible to manage.

Currently, I use Humira, a biological injection pen once every week as part of my Crohn’s regimen. This would not be possible without the Abbott Foundations (the makers of the drug) Patient Assistance Program, as the medicine cost approximately $5,000 per month, quite unaffordable without insurance or out of pocket.

For those who are currently on Humira and not participating in the program, I would strongly encourage you to do so. See http://www.myhumira.com/InsuranceHelp/Default.aspx for more information on HUMIRA

The pen and syringe form of Humira (left)






Additionally other commonly used medications for mild, moderate and severe Crohn’s have programs to make them more affordable to literally free.

Asacol, a mesalamine delayed release tablet, (which at one time I was taking 12 of a day) can be a great tool in the fight against flare ups. The patient assistance program of this medication is another excellent resource. See http://www.pgpharma.com/patient_assistance.shtml for more information on ASACOL

Asacol tablets (left)


Remicade, another biological therapy, made from mice antibodies, can be attained from an excellent patient assistance program, which not only helps with getting the medication, but in my opinion and experience, has the best follow up programs to check on your progress and needs while receiving treatment (which is administered through IV infusion) See http://www.remicade.com/remicade/global/getting_support/insurance_information.html for more information on REMICADE



While I have mentioned only a few medications that might be used to treat Crohn’s disease, there are many other avenues to receive different medications and treatments. I would again strongly encourage one to explore all these options before discounting oneself to having access to these benefits.

If there are any out there that have found more medications with assistance programs, please post them here for others to enjoy the benefits of. Additionally if anyone has heard small pieces of news, leave comments and I’ll do my best to look into it and give timely updates on what I can find from the most reputable sources.



Tuesday, April 21, 2009

Starting out

Crohn's disease. If you have it, then you are well aware of what accompanies it. Immunosuppressant, steroids, flares, and the randomness of it in general. Perhaps you have a family member that is living with it. Or maybe you've never heard of it. Crohn's disease is a member of the family of inflammatory bowel diseases and causes inflammation of the colon, and along with that a number of related symptoms.
One of the most "interesting" traits of this disease is how if effects everyone differently. With that in mind, I will do my best to keep general in my coverage, but truth withstanding; my only experience can be from my own life. The purpose of this blog is to act as an informer, supporter and friend to those who are "surviving" Crohn’s disease. Those who have Crohn’s, like myself, will tell you that at times, we can only hope to survive a flare.

However, life really is more than surviving and enduring a trial, it's about overcoming and making something of everyday.

While at times a very debilitating disease, there are many who go through each day having mastered their illness through medicines, procedures and treatment (medical or homeopathic in some cases). Optimism will be the tone of these posts, focusing on a life where Crohn’s does not hold one back but can act as a driving force.

The need for this blog as one who has Crohn’s, knowing that finding the latest information can be quite a challenge. There are no shortage of small websites or blogs that will tell you about one person’s experience however, as has been said before, the disease effects each person differently so having a broad smattering of news it what has been said to be the most helpful. A great deal of effort will be made to have each post and update accompanied by sources as well as links to more information about treatments, new clinics or things that would greatly improve the life of the Crohn’s patient.

This will be primarily information for people living in South Eastern Idaho, as that is where this author currently lives and the majority of my life with Crohn's has taken place. I will do my best to let everyone know about upcoming events related to Crohn’s, different centers to receive treatment and counsel, and what I have found in different resources about the latest medicines and treatments.

I would encourage those who read to add your own experiences, treatments that you have found effective, as well as anything that you’ve might see as beneficial to the general population with Crohn’s.

Special consideration will be given to those events close to southeast Idaho; however attention will be shown to all new advancements in Crohn’s disease.

I hope that this first post will be the beginning of a great resource for those who, like me, are striving to make their lives great in spite of their Crohn’s, not letting it make them prisoners.