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.

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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.

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Out of the Bag: Blockages

Ostomy ostomies out of the bag Stolen Colon crohn's blogA couple of months back, I wrote a post on here about dealing with some minor blockage pain. The other night, I got a rude awakening. I was dead asleep, but was woken up around 2:30 in the morning with a horrible pain in my stomach and the feeling that I was going to throw up. On top of that I had a very full bag that was entirely liquid.

On any given night, I may wake up once to empty my bag, but it’s usually after 4 a.m. Oftentimes, I don’t have to deal with it at all until I wake up for the day.

I got up to empty the bag, but couldn’t shake the nauseous feeling. I even took a zofran (for the nausea), but it made absolutely no difference. About 20 minutes after emptying the bag, it had filled up with liquid again. Altogether, in about an hour’s time, I emptied the bag 4 times, the final two times it was clear liquid. At first, I had thought I had food poisoning, but by this point I was pretty sure it was a blockage.

I tried massaging my stomach, which seemed to help after a while. I had also heard that you should try moving into different positions to help move things around. The only other thing I could think of would be to take a warm bath, the try to relax the stomach muscles, but it was the middle of the night and I was still half asleep. I was very concerned at the time that I would have to go to the emergency room.

The best thing I found was to relax as best as I could and keep rubbing my stomach. Eventually, I was able to get things moving again and even fall back asleep. The next morning, I still felt a little out of sorts and was putting out only liquid. I had a smoothie and coffee for breakfast, just to help things along. It wasn’t until the afternoon that things got back to normal.

It was a really scary night and honestly, it hurt worse than I had imagined. The hardest part is just not knowing what to do. The last thing I want to do is to head to the hospital in the middle of the night when there’s no real need. But I also don’t want to cause any bigger issues because I don’t want to do that.

This has made me realize even more how important it is to be careful while I eat and to thoroughly chew everything. And possibly the most important thing: drink lots of water!

Can’t catch a break

Actually, that’s exactly my problem. I did catch a break. In my radius and ulna, that is.

I had my first cycling incident this weekend. I was out with a couple of ladies in Apex, ridingstephanie hughes splint broken arm radius ulna bones stolen colon crohns ostomy blog through some of the back roads. We were having a lovely time, it wasn’t too cold and it was the first long bike ride I had done in a while.

We were on our way back and had ridden about 8.5 miles when we had to climb up a small hill. Nothing too big, but as I made my way up I needed to downshift. But when I shifted, my chain locked up. I thought it had actually come off at the time, but either way, I had to stop. Unfortunately, right at that moment I had a truck driving pass me, so I couldn’t step off to my left. I had to step off towards the shoulder, but there wasn’t any shoulder… only a ditch.

It was a slow fall. I didn’t fall hard, but it was a bit of a ways to go. Instinctively, I put my hand out to catch myself, but it was farther of a fall than I anticipated, so I think I braced myself for something shorter. As soon as I went to get up I realized something was wrong. My hand was already swelling and I didn’t even dare to try to rotate it.

The ladies came to help me up and even made me a splint out of a portable bike pump. I could still wriggle my fingers, so at least I knew I still had circulation. I called Jarrod to come pick me up to go to the emergency room. It was awful that we were so far away, but he got there pretty quickly and got me to the doctor.

After lots of X-rays and examinations, it was determined that I have a small fracture at the end of both my radius and ulna in my right arm. Thankfully, none of the small bones in my wrist were broken and it appears that everything is still where it is supposed to be. Therefore, a few weeks in a cast should get me right back on track. I am currently in a splint, but will be going to an orthopedic later this week and they will likely put me in a real cast.

It has been tough the past couple of days. It hurts a lot. They gave me pain meds, which help, but don’t get rid of the pain. Also, I am very right-handed, and trying to do things with my left hand (such as typing this blog post) are difficult. Not to mention just how bulky this splint is and that it gets hot and itchy.

I am upset that I won’t be able to ride or swim or run for a while. However, I am very thankful that things aren’t worse. My Vegas race is over; I don’t have any others on the immediate horizon. Of all times for this to happen, this is actually a pretty good time. But I doubt I will be able to finish up my Christmas decorating and wrapping of presents. I’m definitely going to be working on my patience in the coming weeks.

So does this mean I’m “officially” an athlete?

Still feeling it

It has officially been more than a week since my half-marathon in Vegas and I still am walking around like a gimp. I’ve mentioned several times how my hip was bothering me before the race and has been ever since.

Thankfully, it was feeling good enough during the race to not slow me down too much. But now that I’m home, I’ve been limping around for the past week. I keep getting smart comments from people about how I’m still walking funny from my race, but it’s starting to get less funny now.

I’m sure it happened because I wasn’t properly stretching in my training. I’m realizing now how important that aspect is. Everyone who runs is always saying how important stretching is, but I don’t think you every quite grasp the concept until you injure yourself.

I tried to go for an easy jog today. I made it about 3 steps jogging and realized it wasn’t running stretching recovery foam roller stolen colon stephanie hughes crohns ostomy bloggoing to happen. Instead, I went for a quick 10 minute walk to warm up my muscles, then spent the next half-hour or so stretching and rolling on my foam roller. And I’m not lying, that foam roller is pretty amazing. I’m not sure exactly how it works, but it helps to relax overactive muscles. Already, I’m noticing a difference in my hip. It’s not back to 100%, but it’s definitely better.

I suppose for now I will just plan on focusing on swimming and cycling and slowly move back into running. It’s probably smart to take that part easy. Plus, I’ve neglected the swimming and cycling since I’ve been so focused on the running. I’m having to reign myself in for now so I don’t overdo it. I will definitely not be cutting my stretching short in the future.

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.