A humbling proposal

Stolen colon crohns ostomy blog ccfa team challenge half marathon colitis team challenge tuesday

It’s Team Challenge Tuesday again and if I am going to be completely honest, this was not my week for training. I had a hard time getting out of bed each morning and sticking to a decent length workout. I have a goal to workout 5 times a week for 45 minutes. I started at 35 minutes and have been raising it by 5 minutes each week.

Now that I have my cast off, I was able to go for an actual outdoor run this week. I also realized how much harder it is to run outdoors than it is to run indoors! Holy moly, I didn’t even make it for a half an hour! I was so exhausted and out of breath by that point. On top of that, my calf muscles have been really tight this week and I have no idea why. I didn’t do anything differently, but they’ve been very sore and have been making running a bit more difficult. I stopped early and spent some time stretching. They’re feeling better, but still sore.

Back to my point, now. For any of you who are training for a race: Get Outside! There is such a difference in your endurance and that’s where you really learn how to breathe through your workout. For me, breathing has been such an essential part of the whole equation. Once I figured out how to breathe correctly, I moved very quickly from having to stop every mile or so to making it through the full 13 miles.

Working out in the gym definitely has it’s place and perhaps the bulk of your workouts may still take place there, but try to get outside once a week. That’s probably more plausible at this point since it’s so cold and you can do the outside workout on the weekend.

On a different note, I received a very humbling request this week. Every year, each Team Challenge chapter has a team honoree whose life has been directly impacted by Crohn’s disease or ulcerative colitis. Many people who get involved with Team Challenge may not have a direct connection to IBD. The basic role of the honoree is to be someone that the participants can connect with and to share their story for those who don’t have or don’t know someone who has IBD.

Well this year, I am very honored to have been asked to be the team honoree. I am excited to have the opportunity to share my story with those who will be training with us and raising money for Crohn’s and colitis research. I am looking forward to meeting everyone who will be involved and I am working on putting together a short video that can be shared at any group meetings that I won’t be able to attend. (Perhaps I’ll even post it on here once it’s done.) I am very proud to be a representative of the IBD community for this group. The hardest part is trying to fit my story into a 3 minute segment!

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My thoughts on CCFA’s new ad campaign

There has been a lot of discussion in the IBD community over the past few weeks regarding the CCFA’s new ad campaign, Escape the Stall. I’ve read posts of outrage, shame, confusion, support and unsurity. I have thought long and hard about the campaign and my opinion of it. I definitely see both sides of the argument.

CCFA escape the stall ad campaign stolen colon crohns ibd ostomy blog

The basic disagreement with the advertisements is the fact that they focus solely on having to go to the bathroom. Many feel that this belittles the disease to simply a stomach ache and doesn’t show the many other symptoms that IBD patients deal with every day. Those of us with Crohn’s disease and ulcerative colitis have long fought against the “but you don’t look sick” stigma and the assumption that we’re making a big deal out of nothing.

Yes, this ad focuses on one symptom. But that one symptom is a very big part of having IBD. There are dozens of other issues that can come along with having a digestive disease, but if you are going to pick one that encompasses the greatest number of people, frequent and urgent bowel movements would be it.

I, of all people, understand how much more is involved with having Crohn’s disease. I definitely have dealt with the frequent and urgent need to use the bathroom. I had days where I spent more time in the bathroom than anywhere else. I have looked in the toilet and seen nothing but blood in there. I have lost so much weight that I would pass out if I stood up too fast, nearly falling down the stairs once. I have had extreme stomach cramps where I wished I could claw my intestines out of my body because I honestly thought it would feel better. I have had blood, iron and potent medicine infusions/transfusions. I have been poked with a needle more times than I can count, up to six times at once trying to get a good stick. I’ve been so exhausted that I couldn’t take part in many things I have wanted to do. I have had joint inflammation so bad that I couldn’t get out of bed and my ankles swelled up to the size of a grapefruit. I have had iritis that caused pain in my eye and blurred vision. Hell, I have had surgery to have my colon removed, and none of those things are present in the CCFA ads.

escape the stall ccfa ibd ad campaign stolen colon crohns ibd  blogBUT, I don’t believe this is the point of these ads. As a communications girl, I get what they were trying to accomplish here. They are hoping to start a dialogue. It shows that IBD doesn’t care who you are. The idea is to have people see these ads and realize that they are probably not very distant from someone who is affected.

Also, spreading awareness for debilitating diseases is not an easy task. It is human nature to not want to deal with unpleasant things. If they put an ad out there showing a bloody toilet bowl, people are apt to turn away and not even read what it’s about. Look at so many cancer and diabetes awareness campaigns. They don’t show people slowly dying in a hospital bed (for the most part); they show the faces of men, women and children who are affected by these diseases. They show that these diseases can affect anyone: you or someone you know. There is a place for “shock value” but we’re not there yet. Yes, the ads are a little lighthearted for such a serious disease, but we have to start somewhere. I think the CCFA is making a step in the right direction.

escape the stall ccfa ibd ad campaign stolen colon crohns ibd  blog

A new challenge

Getting involved in the fight to find a cure for Crohn’s disease and ulcerative colitis has been one of the most rewarding decisions I have every made. I realized that living with this disease would mean nothing, other than pain and frustration, if I didn’t use my experiences to help others.

I started small, by volunteering for a couple of local events and taking part in a support group, but I soon saw the enormous benefit of surrounding myself with people who can relate and who are dedicated the same cause. The most profound moment came while in Las Vegas for the Team Challenge half-marathon and sitting in a room surrounded by hundreds of people whose lives have been impacted by IBD. It was there that I truly understood the importance of being involved in something bigger than yourself. And I wanted to continue to be a part of it.

This year, I will be taking part in my second half-marathon with the Crohn’s and Colitis Foundation, this time as a mentor. The role of the mentor is be involved with the participants in the race, encouraging them in both their training and fundraising. The mentors help bring in new runners and coordinate fundraising events.

Team Challenge is more than just signing up for a race. It’s a 16-week training program that includes the support and community of the whole group. There are two big events this season: half-marathons in Virginia wine country and Chicago.

I would be so honored to have some of you on my team. I’d love to get out and run and work together to raise the money to bring more research and awareness to these diseases. Plus, what a better time to check that exercising or race goal off your list? I cannot tell you what a great feeling it was to cross that finish line at the end of the race.

Please let me know if you’re interested in learning more. I guarantee, you will not regret it.

Stolen colon crohns ostomy blog ccfa team challenge half marathon colitis team challenge

A lesson in IBD: part 2

I wasn’t planning on making this a two-parter, but as I was putting things together yesterday, I realized there was so much more information that I could put into one post. And while this is far from extensive, I feel that the two posts can give a pretty good idea as to what living with IBD looks like. I hope it has been educational  Happy Crohn’s and Colitis Awareness Week!

Types of Crohn’s disease

Ileocolitis: The most common form of Crohn’s, ileocolitis affects the end of the small UNC digestive tract organs diagram stolen colon ccfa crohns colitisintestine (the ileum) and the large intestine (the colon). Symptoms include diarrhea and cramping or pain in the right lower part or middle of the abdomen. This type is often accompanied by significant weight loss.

Ileitis: This type affects only the ileum. Symptoms are the same as ileocolitis. In severe cases, complications may include fistulas or inflammatory abscess in right lower quadrant of abdomen.

Gastroduodenal Crohn’s disease: This type affects the stomach and the beginning of the small intestine(the duodenum). Symptoms include loss of appetite, weight loss, nausea, and vomiting.

Jejunoileitis: This type is characterized by patchy areas of inflammation in the upper half of the small intestine (the jejunum). Symptoms include mild to intense abdominal pain and cramps following meals, as well as diarrhea. In severe cases or after prolonged periods, fistulas may form.

Crohn’s colitis: This type affects the colon only. Symptoms include diarrhea, rectal bleeding, and disease around the anus (abscess, fistulas, ulcers). Skin lesions and joint pains are more common in this form of Crohn’s than in others

Treatment

Medication: Medications are designed to suppress the immune system’s abnormal inflammatory response that is causing symptoms. Suppressing inflammation not only offers relief from common symptoms like fever, diarrhea, and pain, it also allows the intestinal tissues to heal. In addition to controlling and suppressing symptoms (inducing remission), medication can also be used to decrease the frequency of symptom flare ups (maintaining remission). With proper treatment over time, periods of remission can be extended and periods of symptom flare ups can be reduced.

There are a number of different types of medications used. If you’re interested in learning about these, CCFA’s website has a good break-down: Crohn’s disease Medication.

Surgery: Even with proper medication and diet, about 70% of people with Crohn’s disease eventually require surgery. There are several different types of procedures that can be performed. If there’s a section of the colon that is particularly bad, they can take that part out and rejoin the ends. They can also make the end of the colon into a stoma for a colostomy or take the entire colon out and make the end of the small intestine into a stoma for an ileostomy (what I have). Finally, there’s also the option for those with ulcerative colitis, to join the small intestine to the rectum and form a j-pouch, that functions, in essence, in the same manner as a normal digestive tract.

Unlike ulcerative colitis, surgery does not cure Crohn’s disease. Approximately 30% of patients who have surgery for Crohn’s disease experience recurrence of their symptoms within three years and up to 60% will have recurrence within ten years.

Prognosis

Crohn’s disease is a chronic condition for which there is no cure. It is characterised by periods of improvement followed by episodes when symptoms flare up. With treatment, most people achieve a healthy weight, and the mortality rate for the disease is relatively low. However, Crohn’s disease is associated with an increased risk of small bowel and colorectal carcinoma, including bowel cancer. It can vary from being benign to very severe and patients could experience just one episode or have continuous symptoms. It usually reoccurs, although some patients can remain disease free for years or decades. Most sufferers live a normal lifespan.

This post is merely a conglomeration of information from CCFAUNC School of Medicine, and Wikipedia. Since this is not an academic paper, some of the information I took straight from these sources without worrying about putting it into my own words. I am in no way trying to plagiarise and pass this off as my own work.

A lesson in IBD: part 1

CCFA crohn's colitis awareness week stolen colon

On November 14, 2011, the U.S. Senate passed Senate Resolution 199 (SR 199): “A resolution supporting the goals and ideals of Crohn’s and Colitis Awareness Week, December 1-7.” 

This week is all about spreading awareness for inflammatory bowel disease, and while that’s really what I hope to do every day of year, this week is an important one to recognize. So in honor of Crohn’s and Colitis Awareness Week, I thought I’d provide some information on these disease that some may not know.

Inflammatory bowel disease (IBD) usually refers to either Crohn’s disease or ulcerative colitis. As the name would indicate, these diseases are marked by inflammation in the digestive tract. Crohn’s and colitis are auto-immune diseases, meaning that the white blood cells that usually attack foreign invaders, like bacteria and viruses, mistakenly start attacking healthy body tissue.

Crohn’s disease was first recognized in 1932 when Dr. Burrill Crohn and his colleagues  published a paper titled “Terminal Ileitis: A new clinical entity.” Today, it is estimated that 1.4 million Americans are living with IBD.

The cause of IBD is not known, but heredity, genetics and environmental factors are thought to play a role. IBD tends to run in families, so those with an immediate family member with it are more likely to develop IBD. Studies show that 5-20% of diagnosed individuals have an immediate family member with IBD. (Personally, I have a 2nd-degree family member who had Crohn’s: my grandfather.) The risk is greater with Crohn’s than with ulcerative colitis. They are more common in developed countries rather than undeveloped countries, in urban rather than rural areas, and in northern rather than southern climates.

Symptoms of IBD include persistent diarrhea, rectal bleeding, urgent need to move bowels, abdominal cramps and pain, sensation of incomplete evacuation and constipation, which can lead to bowel obstruction.  (Many of these symptoms also present in irritable bowel syndrome or IBS, but those with IBS do not have inflammation.) Other symptoms that can stem from IBD are fever, chills and night sweats, loss of appetite and significant weight loss and fatigue. Crohn’s disease and ulcerative colitis can both cause symptoms outside of the digestive tract, including liver problems, arthritis, skin manifestations and eye problems.

IBD is generally diagnosed by a combination of symptoms, lab results (blood, stool, urine, biopsy samples) and colonoscopy/endoscopy.

Below is a comparison of a healthy colon and an inflamed colon. You can see how raw the lining looks.

healthy inflammed colon stolen colon crohns ibd blog

Crohn’s vs colitis

Crohn’s disease can affect any part of the digestive tract, from the mouth all the way to the anus. Crohn’s most commonly affects the end of the small bowel (the ileum) and the beginning of the colon. It can affect the entire thickness of the bowel wall and it can cause patches of inflammation, leaving healthy areas in between.

Ulcerative colitis is specific to the large intestine. It only involves the innermost lining of the colon and does not occur in patches, as Crohn’s disease can.

This post is merely a conglomeration of information from CCFAUNC School of Medicine, and Wikipedia. Since this is not an academic paper, some of the information I took straight from these sources without worrying about putting it into my own words. I am in no way trying to plagiarize and pass this off as my own work.