Where I am at right now.

I'm pretty confident that if you started reading this blog at it's inception you are no longer reading it. Which means that if I start getting any hits at all, it's from new readers. I won't belabor the point today, as I am trying to get this post done, but in the future I might do a quick run through of my Crohn's history. 

I'll quickly give a snapshot of where I am at right now. 

Medicines

 So for now I'm taking Azathioprine/Imuran daily. Only one pill a day, that's a little bit better than the 6 daily pills I was first taking. For a while this has been working pretty well. I've felt good and haven't been feeling any flare ups. but... 

Symptoms

 I'm starting to worry that I'm seeing a few symptoms. Blood, fatigue, etc... If you are new to Crohn's you'll know it's hard to know if you are really in a flare because there are so many other variables... If I ran a marathon, I would be tired from running (you're thinking, "duh?"), but with Crohn's, I might be tired from blood loss, poor nutrient absorption or anything else. 

Fitness

I'm pretty out of shape. If you saw me, you wouldn't think so, but I am. I have been pretty lax on the physical activity lately and it's showing... Not only that but I can feel it. I'm sluggish and frankly, I sweat peeling an orange. I just stared the INSANITY workout with my wife. Day 2 and I can tell that there are muscles that haven't been used since high school weight lifting class... just about a decade or so. 

Doctor

I don't have a new doctor where I am. I've had bad experiences before and I really want to find someone consistent that I can talk to. I'll do a post in the future about whether I found one and some of the things that I considered. 

So there you have it. Just a little bit about what's going on right now. I'll try to update the blog about twice a week. If we start seeing more traffic or (gasp!) a comment. I might try to bump it up. 

Relaunch

Awhile ago I put out a post entitled "Is anyone still reading this?"... To say the reception was small would be an understatement.

Then I thought.. I haven't posted anything in years. Why would anyone read this?

So, in the coming days and weeks I'll be tweaking a few things around here and there and try to start posting regularly. I don't know if I will have a great deal to say but I think that having something new up once in a while is refreshing to others who have Crohn's disease.

Anything you want to see on the blog?

Anyone still reading?

I haven't posted on this in a long time. It was mostly just for a school project and I wasn't sure how long it would continue. I see now that there are numerous people who are watching the website for information. So, here's the deal. I'll leave up the page for another three weeks. If I get a fair amount of traffic, I'll start updating again with Crohn's news and other info that I find. Leave a comment.

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."

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....

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.

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.