What is Inflammatory Bowel Disease? Part 2 – Ulcerative Colitis

Aug4

Last month I talked about my disease, Crohn’s Disease. This month I will attempt to tackle the other most common disease with IBD, Ulcerative Colitis. Of course, I don’t have it so it will be hard to put my own feelings into this so it might read more like a medical journal. I apologize for that but I want you, the reader, to understand that IBD isn’t just one disease and we all go through life with IBD differently.

What is Ulcerative Colitis?

The first thing you should know is that Ulcerative Colitis or UC isn’t better or worse then Crohn’s. It is just different. Crohn’s can affect any area of the digestive track but UC only occurs in the colon. You know this by the name of the disease. Colitis actually means inflammation of the colon. Someone with CD might hear they have Crohn’s Colitis and get confused. This just means that the Crohn’s is in the colon. With UC, not only is the colon inflammed but also has ulceration. The other difference between the CD and UC is that CD can affect all layers of the bowel wall but UC will just affect the lining of the intestines.

what-is-ulcerative-colitis

Diagnosing

The first step in diagnosing UC is usually doing blood and fecal matter tests. They will test your stool for reasons for diarrhea and blood like bacteria, viruses and parasites. The next step would be endoscopy. This might consist of a sigmoidoscopy or a total colonoscopy. During the scope, like with CD, the doctor will probably take a biopsy.

Symptoms

While both UC And CD are IBD, they don’t have all the same symptoms. Crohn’s seems to have a lot more since it affects more of the body. There are many that they do share though.

Bowel movement become looser and more frequent – Diarrhea is common and like CD is hard to control.
Blood stool – Because of the ulceration and inflammation, there will be blood in the stool.
Abdominal pain – Because this is a gut disease, there will be pain in the abdomen. At times it can be crippling.
Lack of appetite – Of course, because of what is going on in the colon, you might not have much of an appetite. Many people actually feel pain when they eat also and tend not to eat to avoid the pain.
Weight loss – Between not eating and diarrhea, wight loss is expected and does happen. With many people it can be a drastic weight loss.
Fatigue – Because your body is fighting itself, you will feel tired. There are times when a person with UC will have no energy. This is normal.

Cause of Ulcerative Colitis

The big question of the day….what causes UC? The answer to this is….no one knows. Sadly, it is not know what causes UC or any IBD for that matter. Some say it is the environment, while others will say genetics and still others will say it is the food we eat. To date, there have been no hard evidence showing what causes Ulcerative Colitis. There have been studies done on this however. Once study was done by CCFA:

Research sponsored by CCFA has led many scientists to believe that ulcerative colitis may be the result of an interaction of a virus or bacterial infection of the colon and your body’s natural immune system response. Normally, your immune system will cause temporary inflammation to combat an illness or infection, and then the inflammation will be reduced as you regain health. In people with ulcerative colitis, however, this inflammation can persist long after your immune system should have finished its job.

Like CD, UC affects many people. In the USA alone there are around 700,000 people affected by UC. It is equally distributed between men and women so sex is not a factor. Unlike CD that usually shows up early in life usually in your teenage years, UC is usually diagnosed when the person is in their mid 30’s. That isn’t to say you can’t get it at an earlier age as there are many kids with UC.

Medicines

Again, to make it easy, I will quote from the CCFA’s website on the types of medicines used:

Aminosalicylates (5-ASA)

These include medications that contain 5-aminosalicylate acid (5-ASA). Examples are sulfasalazine, mesalamine, olsalazine, and balsalazide. These drugs are not specially approved by the Food and Drug Administration (FDA) for use in ulcerative colitis.. However, they can work at the level of the lining of the GI tract to decrease inflammation. They are thought to be effective in treating mild-to-moderate episodes of ulcerative colitis and useful as a maintenance treatment in preventing relapses of the disease. They work best in the colon and are not particularly effective if the disease is limited to the small intestine.

Corticosteroids

Prednisone, methylprednisolone and budesonide are steroids that are available orally and rectally. Prednisone and methylprednisolone nonspecifically suppress the immune system and are used to treat moderate to severely active ulcerative colitis. (By “nonspecifically,” we mean that these drugs do not target specific parts of the immune system that play a role in inflammation, but rather, that they suppress the entire immune response.) These drugs have significant short- and long-term side effects and should not be used as a maintenance medication. Budesonide is a steroid that is used to treat localized inflammation. It has the benefit of minimal systemic exposure with far fewer risks and side effects. Because corticosteroids cause the adrenal glands to slow or stop the natural production of the human steroid cortisol, they cannot be stopped abruptly. If you cannot come off steroids without suffering a relapse of your symptoms, your doctor may need to add some other medications to help manage your disease.

Immunomodulators

This class of medications modulates or suppresses the body’s immune system response so it cannot cause ongoing inflammation. Immunomodulators generally are used in people for whom aminosalicylates and corticosteroids haven’t been effective or have been only partially effective. They may be useful in reducing or eliminating the need for corticosteroids. They also may be effective in maintaining remission in people who haven’t responded to other medications given for this purpose. Immunomodulators may take several months to begin working.

Antibiotics

Antibiotics may be used when infections—such as abscesses—occur. They can also be helpful with fistulas around the anal canal and vagina. Antibiotics used to treat bacterial infection in the GI tract include metronidazole, ampicillin, ciprofloxacin, others.

Biologic Therapies

These therapies represent the latest treatment class used for people suffering from moderate-to-severe ulcerative colitis. These treatments are called biologics because, unlike chemical medications, they are made out of material found in life, usually proteins. Many biologic treatments are proteins called antibodies, which normally are part of the body’s immune defense. The antibodies used for biologic therapy have been developed to bind and interfere with the inflammatory process in the disease.

Another thing, like CD, that can help is a change in diet. Again, food does not cause or heal UC but can help in the body to heal itself. Some foods might make it hard on the intestines like high fiber so a low fiber diet might help some people.

Surgery

In UC patients, there might come a time when meds and diet doesn’t help anymore. When this happens surgery is usually the next option. Sadly there is no simple surgery and the results are the removal of part or all of the colon and possibly the rectum. I will get into this more in another post.

One thing I do want to say about surgery, and I know many people will disagree with me on this, but even if you remove the disease from the colon, you are not cured. Like CD, UC doesn’t travel so if you remove the disease intestines, yes, the actual disease is no longer there. Because the disease is more then just in the intestines, you still carry the disease within your blood and DNA. Also, some would say removing the colon and wearing an ostomy isn’t a real cure either because you are exchanging one problem with another.

Types of Ulcerative Colitis

Like Crohn’s, there is no one type of UC. Instead there are a number of different types, depending on the location of the disease. According to medicinenet.com the different types are:

Ulcerative proctitis refers to inflammation that is limited to the rectum. In many patients with ulcerative proctitis, mild intermittent rectal bleeding may be the only symptom. Other patients with more severe rectal inflammation may, in addition, experience rectal pain, urgency (sudden feeling of having to defecate and a need to rush to the bathroom for fear of soiling), and tenesmus (ineffective, painful urge to move one’s bowels caused by the inflammation).
Proctosigmoiditis involves inflammation of the rectum and the sigmoid colon (a short segment of the colon contiguous to the rectum). Symptoms of proctosigmoiditis, like that of proctitis, include rectal bleeding, urgency, and tenesmus. Some patients with proctosigmoiditis also develop bloody diarrhea and cramps.
Left-sided colitis involves inflammation that starts at the rectum and extends up the left colon (sigmoid colon and descending colon). Symptoms of left-sided colitis include bloody diarrhea, abdominal cramps, weight loss, and left-sided abdominal pain.
Pancolitis or universal colitis refers to inflammation affecting the entire colon (right colon, left colon, transverse colon and the rectum). Symptoms of pancolitis include bloody diarrhea, abdominal pain and cramps, weight loss, fatigue, fever, and night sweats. Some patients with pancolitis have low-grade inflammation and mild symptoms that respond readily to medications. Generally, however, patients with pancolitis suffer more severe disease and are more difficult to treat than those with more limited forms of ulcerative colitis.
Fulminant colitis is a rare but severe form of pancolitis. Patients with fulminant colitis are extremely ill withdehydration, severe abdominal pain, protracted diarrhea with bleeding, and even shock. They are at risk of developing toxic megacolon (marked dilatation of the colon due to severe inflammation) and colonic rupture (perforation). Patients with fulminant colitis and toxic megacolon are treated in the hospital with potent intravenous medications. Unless they respond to treatment promptly, surgical removal of the diseased colon is necessary to prevent colonic rupture.

forms-of-ulcerative-colitis

Like Crohn’s, getting a diagnosis of Ulcerative Colitis does not mean your life is over. With treatment you can go on to live a long and prosperous life. I know many people with UC that go on to run marathons, climb mountains and participate in iron men competitions.

What is Inflammatory Bowel Disease? Part One: Crohn’s Disease

Jul14

I have been sitting here thinking about what to write and it hit me that I don’t think I have ever done a post on just what Crohn’s Disease or IBD is. So, what better time then now to talk about it.

WHAT IS CROHN’S DISEASE?

Let’s start with IBD or Inflammatory Bowel Disease. IBD is a broad term used for many diseases. They are chronic and incurable disease and usually make life a living hell for many of us. The two main diseases under the umbrella of IBD is Ulcerative Colitis and Crohn’s Disease. I won’t get into Ulcerative Colitis or UC yet. Maybe on another post.

Crohns

Crohn’s Disease was first described in 1932 by a number of doctors in a paper. Because the author’s were listed alphabetically, Dr Burrill B Crohn was listed first and the disease got named after him. The other doctors involved were Dr. Leon Ginzburg and Dr. Gordon D Oppenheimer.

Crohn’s Disease can affect any area of the digestive tract from the mouth to the anus. It is most commonly found in the intestines and usually affects the end of the small bowel (ileum) and the beginning of the colon. CD can affect the intestines in a number of different ways. Of course, the most obvious is that there is inflammation. It can affect the thickness of the intestinal wall. One major thing about this disease is that it can skip areas.

SYMPTOMS

When active, there are many symptoms that can occur. They can include some or all of the following:

Cramping and pain in the abdominal area
Rectal bleeding
Diarrhea
Frequent and urgent needs to move the bowels
Constipation – this can lead to an obstruction
Nausea and vomiting
Low grade fever
Weight loss
Fatigue
Night sweats
For women – a loss of menstrual cycle

Besides those symptoms, Crohn’s can cause extraintestinal manifestations including but not limited to:

Cataracts
Mouth sores and ulcers
Arthritis
Ankylosing Spondylitis
Sacroilitis
Osteoporosis
Gall Stones
Uveitis and Episcleritis
Pyoderma gangrenosum
Erythema nodosum

CAUSES OF CROHN’S

So what causes Crohn’s Disease. Well, I wish I had a simple answer. Truth is, no one really knows. We know it is hereditary and it has been linked to a gene so we can say it is genetic. Some say it is an autoimmune disease, which means the body is turning on itself and fighting something that isn’t there, however there has never been enough proof on this. Some say diet will cause it but again, there is no one food or drink that can be linked to the disease. Stress has been a factor. So can environmental factors. Truth is we really don’t know what the trigger for the disease is and the number of patients with the disease is growing every year.

So you suspect you might have the disease but you don’t know. Well, the way to find out is to see a doctor. For your initial diagnoses I would suggest seeing your internist first and let them rule out other illnesses and problems. If they suspect IBD, then the next person to see is a gastroenterologist or GI. They will preform a number of test and will most likely include a colonoscopy. This entails inserting a think flexible tube called a colonoscope into your anus and up into the colon. The scope has a small video camera on it and is used to take pictures of your colon. Your GI will most likely take biopsies of your colon to test it for IBD as well as other issues like cancer. While other tests are also used, like stool tests, MRI’s and sigmoidoscopies, the colonoscopy gives the best view of the intestines.

colonoscopy

Once diagnosed, you will go through many emotions. You might feel like your life is over. You might feel relieved to have answers. You most likely will still feel sick because even though you are diagnosed, you haven’t been treated yet. This leads me to treatment options. Now as I said earlier, Crohn’s is not curable (as of yet) so you will have to be on some sort of medicinal treatment for the rest of your life. I know some people will argue with me over this, but we won’t get into that just yet.

MEDICINES

As far as medicine goes, there are a bunch of different types. For this I will quote from The Crohn’s and Colitis of America’s page:

Several groups of drugs to treat Crohn’s disease today. They are:

Aminosalicylates (5-ASA)

These include medications that contain 5-aminosalicylate acid (5-ASA).Examples are sulfasalazine, mesalamine,olsalazine, and balsalazide.These drugs are not specially approved by the Food and Drug Administration (FDA) for use in Crohn’s. However, they can work at the level of the lining of the GI tract to decrease inflammation.They are thought to be effective in treating mild-to-moderate episodes of Crohn’s disease and useful as a maintenance treatment in preventing relapses of the disease. They work best in the colon and are not particularly effective if the disease is limited to the small intestine.

Corticosteroids

Prednisone and methylprednisolone are available orally and rectally. Corticosteroids nonspecifically suppress the immune system and are used to treat moderate to severely active Crohn’s disease. (By “nonspecifically,” we mean that these drugs do not target specific parts of the immune system that play a role in inflammation, but rather, that they suppress the entire immune response.) These drugs have significant short- and long-term side effects and should not be used as a maintenance medication. If you cannot come off steroids without suffering a relapse of your symptoms, your doctor may need to add some other medications to help manage your disease.

Immunomodulators

This class of medications modulates or suppresses the body’s immune system response so it cannot cause ongoing inflammation. Immunomodulators generally are used in people for whom aminosalicylates and corticosteroids haven’t been effective or have been only partially effective. They may be useful in reducing or eliminating the need for corticosteroids. They also may be effective in maintaining remission in people who haven’t responded to other medications given for this purpose. Immunomodulators may take several months to begin working.

Antibiotics

Antibiotics may be used when infections—such as abscesses—occur in Crohn’s disease. They can also be helpful with fistulas around the anal canal and vagina. Antibiotics used to treat bacterial infection in the GI tract include metronidazole, ampicillin, ciprofloxacin, others.

Biologic Therapies

These medications represent the latest class of therapy used for people with Crohn’s disease who have not responded well to conventional therapy. These medications are antibodies grown in the laboratory that stop certain proteins in the body from causing inflammation.

One medicinal treatment I won’t go into, but has helped many, is medicinal marijuana. It isn’t legal in every state so it isn’t an accepted practice yet. However for people that have used it to treat their Crohn’s will swear it is probably one of the best things to help them.

Besides medicine, many people found by changing how they eat can help with pain and help bring on and stay in remission. Again, there are a lot of different diets, like drugs, and there is no one diet that works for everyone. Some of the biggest diets used though are the Paleo diet and Gluten Free diet.

SURGERY

When everything fails, and you just don’t get better, surgery might become an option. With UC, it has become a sort of cure because once you remove the disease part of the intestines, you remove the disease. With Crohn’s though, this isn’t true. As I mentioned earlier, the disease can jump around and skip areas. Surgery with Crohn’s is usually the last option because even if they remove the area that is bad, there is nothing from having it appear elsewhere.

Some things to know about surgery:

About 70% of people with Crohn’s will at some point require surgery
Approximately 30% of patients who have surgery experience recurrence of their symptoms within 3 years and up to 60% will have a recurrence within 10 years

Now there are a number of reasons to have surgery. One reason is to help correct and treat for fistulas, fissures or obstructions. Some people will have their colons removed and may get a J pouch or an ostomy.

Types of Crohn’s

Now you know a lot more about this one disease and I will now throw you a curve ball. Crohn’s disease can be called a number of different names. This is because they usually call it based on where the disease is and this can change over the years. to best describe the names I will again quote from the CCFA:

The following are five types of Crohn’s disease, together with their presenting symptoms:

Ileocolitis

The most common form of Crohn’s, ileocolitis affects the end of the small intestine (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 (granulomatous) 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

So there it is in a nutshell. You now know what I have been blogging about for a number of years now. The one thing I do want you to take away from all of this is if you do get IBD…your life is not over. Yes there are some that do die from the disease and there are others that have a lot of issues and problems and find living a major hassle. For the majority of people though, we do what we have to and live our lives. There is a lot of support out there and you just have to reach out if you want it. The IBD community is really big and we love to support one another.

Meet Dr. Frank J Sileo

May3

In an effort to switch things up and get you, my readers, more involved, I have brought in a great person to hopefully shake things up here.

I want to introduce Dr. Frank J Sileo.

Frank

Dr. Frank J. Sileo is a New Jersey licensed psychologist and is the Founder and Executive Director of The Center for Psychological Enhancement, LLC located in Ridgewood, New Jersey. He works with children, adolescents and adults. He received his Doctorate in psychology from Fordham University in New York City. He received his Master of Science degree from Fordham University and his Bachelor’s degree from Iona College in New Rochelle, New York. Dr. Sileo has been in private practice in Ridgewood, New Jersey since 1995. Since 2010, Dr. Sileo has been consistently voted one of New Jersey’s Favorite Kids’ Docs by readers of New Jersey Family magazine.

Dr. Sileo is an award winning author and an active public speaker. He is the author of five, soon to be seven children’s picture books: Toilet Paper Flowers: A Story for Children about Crohn’s Disease, Hold the Cheese Please! A Story for Children about Lactose Intolerance, Bug Bites and Campfires: A Story for Kids about Homesickness, Sally Sore Loser: A Story about Winning and Losing and Don’t Put Yourself Down in Circus Town: A Story about Self-Confidence. Sally Sore Loser is the recipient of the Gold Medal Award from the prestigious Mom’s Choice Award. His sixth children’s book, to be released in February 2017 is on teaching mindfulness to kids. His seventh children’s book on a type of bullying will be released in the fall of 2017. He has written extensive general interest articles and has been quoted numerous times in various local and national newspapers, magazines, podcasts, websites, radio and television.

Dr. Sileo will be posting on here from time to time. You may be wondering what makes him qualified to talk to you about IBD. Well, that is easy to answer. He is a Crohnie. He has also on the board of CCFA in NJ and nationally. He speaks across the country for CCFA on the psychological effects of IBD on patients and caregivers.

Let’s welcome Dr Frank Sileo aboard and feel free to leave a comment if you want him to discuss anything specific.

Happy New Year – A look into 2014

Jan16

Wow, it has been awhile since I posted anything. I am sorry for that everyone. Life has been real busy, especially at work. A lot of good things are happening though so even though I am busy, it is a good thing.

I recently started working with The Intense Intestines Foundation (www.intenseintestines.org). I don’t want to say just yet what I am working on but I will definitely reveal that in a couple of months once all the details are worked out. I will say it has to do with supporting others with IBD and I can not wait to get started. I also have been working with The Crohn’s Journey Foundation (http://thecrohnsjourneyfoundation.org/). Again I can’t say just yet what it is I am working on but that will be revealed next month if all goes well.

So how was everyone’s holiday season? Did you have fun and do anything special? I know a lot of people I talk to online spent it in the hospital. Myself, I spent it on a cruise down south. My wife and I took a Christmas cruise to Florida and the Bahamas. It was reflecting on the cruise that got me to write this blog. I was wondering how many of you with IBD find it hard to travel and go somewhere?

This was my first cruise where I am gluten free. We had done some research and had read that there would be plenty of options for food for me. I really didn’t worry about it. I should have. My first clue was when we first got on the ship and went to lunch. The only thing listed as gluten free was the mashed potatoes. Good thing I know what normally has gluten in it so I was able to play it safe. This theme of lack of gluten free items would carry on throughout the cruise. Most of the desserts were not gluten free. I started to get annoyed because the reality is that it isn’t hard to do. They did have GF bread and it was ok. My dinners were altered to be GF and I was happy for that. But for desserts, they could have made a flourless chocolate cake. I am sure many people would eat it.

Overall, I had fun on the cruise. We went to Cape Canaveral in Florida, Nassau Bahamas and their private island in the Bahamas. I was lucky and had no major issues with my Crohn’s. I was able to go out and have some fun. I even was able to indulge in a little alcohol…ok…it was more then a little. I did worry at times that I might have some problems but luckily my guts stayed quiet.

I would like to know what some of your tricks are travelling. Do you pack extra clothes? Do you take certain meds to calm the guts? I remember take Lamodal on one cruise about 3 years ago. I helped me enjoy myself and gave me a life off of the toilet. Thankfully, I didn’t need it this time around.

Well, vacation time is over and it is a new year. I think this is going to be a great year. I myself am working on so many IBD related things. Besides IIF and TCJF I will be working with GYGIG again in June. I might do the CCFA Takes Steps this year. So much to look forward to this year. I hope to post more often and will let everyone know about everything that is going on. I do want to say that if you live in the NYC tri state area, we have some good things for you this year. But that is another post for another time.

Take Steps 2013

Jun3

Yesterday I participated in the Take Steps for Crohns and Colitis which is run by CCFA. Better yet, I volunteered. Last year I was wiped out from walking so I decided this year I would help out instead. Ok, that took its toll on my body even more. Today my back and neck are achy and my feet are sore. But it was soooo worth it.

One thing I like about the walk is the location. I was helping out at the Liberty State Park walk and the views from there are breathtaking.

After I take this in I head over to my assigned area, the food tent. This year I decided to put my talents to use. I helped get donated food for the walk. I was able to get some coconut water, vitamin water, Smartwater, fruit and chips.

After we got set up, I decided to look around before it got real busy. There were tents for some drug reps (Humira, Remicade), Team Challenge sign ups, the Kids Corner with bouncy house, and the DJ. All was quiet before the storm.

As you can see from the pictures, it looked like a storm was coming but luckily, the rain held off. The wind was pretty powerful though. With the almost 90 degrees and humidity, the wind was refreshing.

At 4:00, the walkers were off for a 2.15 mile walk. When they came back that was when the real fun began. Our tent got mobbed. Aside from what I brought, we also had sandwiches, cookies, granola bars, orange juice and spring water. Pretty much everything went.

One thing I have noticed about these walks, and it disturbs me a little is that everyone chats but no one really talks about the disease …. which is why we are all here. I was talking with one of the volunteers and he asked why I was there. I mentioned I had Crohns. He said his son has Crohns and that was it. No further discussion. It really hit me that although everyone comes out to bring awareness and come together, no one really wants to talk about it still. My only conclusion is because it isn’t just the patient but friends and family there also that they don’t feel like opening up. I can understand that.

This up coming weekend is Get Your Guts in Gear. I know a lot of the volunteers that will be there. I know we will be talking about it a lot more but we will also have fun and talk about other things. 2 weeks and 2 awareness events. It is enough to tire these old bones. After the walk, I feel achy. Hate to see what next week brings. Stay tuned for a recap.

World IBD Day 2013

May18

HAPPY WORLD IBD DAY!!!!!!

The time has come once again for us to celebrate our disease and spread awareness. This year I was inspired by CCFA’s poor attempt at marketing IBD. As you know from previous posts that I was not for their Escape The Stall campaign. I felt their campaign didn’t show just what our disease is or can do.

So, to keep this brief, I made my own video to show just what this disease is to us. I hope you enjoy it.

My Take on the Escape The Stall Ads

Jan11

Yesterday I read a blog by another blogger, Marisa, which can be found here. This lead me to a post written by Sara found here.

The reason I mention these two blogs is because they kind of opened my eyes to the new campaign going on by The Crohn’s and Colitis Foundation of America (CCFA) called Escape the Stall (http://www.ccfa.org/escapethestall/). The face being put to the campaign is Amy Brenneman who is known from such shows as Private Practice, NYPD Blue, and Judging Amy.

First, I applaud Amy for coming out of what I call the IBD closet. It is great to have another face to the disease. I am also very happy that the CCFA is finally putting ads and stories out there nationally. IBD is usually talked about quietly in dark corners. CCFA is now bringing out into the open and I am very happy and thankful for that.

I had read the reason for why they went with this campaign and at first it didn’t bother me. I admit I have used bathroom humor in the past as I have a page on Facebook called Bathroom Talk. But as I look into myself, I know I did it as a way to cope.

Over the past year I have learned so much about IBD. Crohn’s and Colitis is no laughing matter. Yes, a lot of us use laughter to cope with our chronic illness, but in no way should the illness be looked upon in a funny way. As the ads show, we spend a lot of time in the bathroom. Anyone with IBD knows this is a reality..but it is a small part of the disease. And this is where I come to the realization that the CCFA ads are not a good idea.

So many people with IBD are sick. They have no energy. They can’t do simple things like get out of bed. Some people are in constant pains. Belly pains, joint pains, muscle pains…just overall pain. There is nausea, fevers, rashes, and eye problems. We take horrible medicines that give us really horrible side effects with some of those being untreatable cancer. Many people with IBD have numerous scars from many surgeries. Some people spend months in a hospital bed hooked up to tubes. Many suffer from drastic weight lose and look like walking skeletons.

Now you are probably thinking, “Wow, people with IBD have it bad”. Well, yes we do. But looking at the new ads, all you would think is that we spend a lot of time on the toilet. When people put out ads for cancer we see bald people hooked up to chemo. When there are ads for emphysema we see broken down people hooked up to oxygen tanks. The no smoking ads in NYC show people with amputations, trach tubes, and just looking horrible. So where is our graphic ads?

When it comes down to it, seeing an underweight person with IV’s and an NG tube laying in a hospital bed with some surgical scars would be more effective than saying “Hey this person poops a lot. Help them out”. I recall when I first got diagnosed as a teenager with Crohn’s that my doctor told me that I would most likely have at least one surgery in my life due to the disease. Where is that fact in the ad.

I am grateful for all that CCFA has done and continues to do. I will be volunteering this year for their Take Steps walk and hopefully for Camp Oasis. But I have to say that I am shamed by their new and first national ads.

Day 25 #NHBPM – How have your goals as a patient / advocate / person evolved?

Nov25

Well, we are in the home stretch on the blogs and this is one that will really make me think. In the beginning of the month I didn’t give much thought to my post, now, I am spending probably too much time on them 🙂 This one will be no different.
When I first started down the IBD road, I didn’t give it much thought. I went through my years of being sick and I never had a goal in mind. I just wanted to feel better and live my life. I didn’t even know too much about the disease. Growing up in the 1980’s the only resource around was the local library and since there wasn’t much written about Crohn’s there wasn’t much to read.

Over time, decades would pass. During the 1990’s, I started feeling a lot better to the point that I went off all medicines. Since I didn’t know much about the disease, I didn’t know that this was a bad idea, and I didn’t see any point in learning more about my disease. I went through life ignorant of what I had.

With the coming of a new century, my life changed. In the 2000’s I started seeing a new GI who wanted me back on meds. This started my downward spiral with medicine. For some reason, I still never really felt the need to learn more about my disease or treatments. Time would go on and living 20 years would come with me still ignorant about my disease. I would go to some symposiums by CCFA and would read things here in there but by now I chose to just play dumb. Why not? I have been getting by without having to do much research.

By 2011, my life with the disease would change, and so would my goals. My father in law who suffered with UC in his life and had a ostomy bag passed away. This hit me because I looked up to him in my battle with IBD. He was an inspiration in how he lived his life. Second, I went into my biggest flare ever. I started going through depression and felt like my life was going downhill real fast.

I started to feel useless in my battle. After 23 years, I felt it was time. It was time to finally find out just what I am living with. I went online and realized just how much information was out there. My life was about to change. I was no longer going to be a patient, but an advocate. I won’t go into the big details as I have talked about them a number of times already in other posts. You know who I found online to be inspired by, who I learned from and just who could really help me.

After all is said and done, this blog now serves as my sounding board to help others. I have gotten some really good feedback to show that what I stated out to do is working. My main goal now is not educating myself but educating others. I want to let other IBDers know just what options they have with their treatments, how to find a good GI and mainly just let them know that they aren’t alone with their disease.

My Facebook friends list has more IBDers than real friends. Same for my Twitter account. I talk to more people with UC and CD then I have ever. Sometimes I learn some new information from them. Sometimes I help them. As 2012 draws to a close I look at where I have come from and how far I have traveled this year. I went from feeling depressed, lonely and useless to being strong, confident and helping others. I couldn’t have done it without the support of my fellow IBDers.

As for the future, I don’t know what it entails. I want to become more active with CCFA. I will probably work Camp Oasis this summer. Anything else…I don’t know. I guess we will have to wait and see.

Day 24 #NHBPM – “If I had more than 24 hours in a day…” (Or unlimited spoons or funds)

Nov24

Wow…more time on my hands. What would I do? I know of some other people with IBD that will love this post because they are limited to what they can do at the moment because of their disease. I however am not in that place right now. That doesn’t mean I don’t wish I had more time in the day.

So what would I do? Well, first I spend so much time right now working on this blog. It takes up not just time but energy. An extra hour would be great to help focus more on my words to get them right. I am usually distracted because I have the TV on or the wife is wanting some household chore done or something in life is just getting in the way. More time means…more time.

I would also like to do more volunteer work for the IBD community. I want to help with CCFA more. Because of transportation issues, any office is too far. The NYC office is close but I rely on mass transit so it takes forever to get home. New Jerseys office is just too far of a drive at this time. I don’t want to spend the gas. More time in the day would give me the time to spend for travel so I can help out more.

More time in the day would also mean more time with my loved ones. I can spend more time with my wife. There is nothing better than having more time with the person who you love. In life we never spend enough time telling someone how much we care about them. This extra time would help with that.

And then there is my online family. Facebook, Twitter…I love you all but don’t have enough time and sometimes energy to write to everyone. I wish I had an extra hour or two to connect with my IBD family to see how everyone is doing and help out where I can.

Even now, as I end this blog I wish I had more time. But reality is 24 hours. So let’s start the day.

Feeling the IBD Love

Aug10

This week I was asked to do a guest post for a great website..which leads into this weeks “Follow Friday”. Usually the advice I give can be used by everyone but I normally have adults in mind. Well, this week I am here to talk to the youth.

So, this week I want to single out a great website that is run by The Crohn’s & Colitis Foundation of Canada or CCFC. It is a site called The Gutsy Generation: (http://www.thegutsygeneration.ca/site/c.buLTK7OQLpK8E/b.6247843/k.C798/Connect.htm). The post I did can be found on their blog site which is http://thegutsygeneration.blogspot.com/.

Now I am not talking about them because I did a post for them. I am talking about them because they target a huge audience….the kids. Looking over their website, I was reminded of my own youth. I was 15 when I was diagnosed with IBD and essentially that is when my childhood ended. I remember the feelings and the pain like it was yesterday…yet it was 24 years ago. When I was first asked to write the post, I didn’t know what to write. I wanted to connect with the kids today that suffer, but wasn’t sure what to say. When all my memories started to flood me I said to myself….”That is what I am going to write”. I said from the beginning that I wanted to help people know they aren’t alone with their IBD and that was what I was going to do. By showing the youth out there that even us adults have gone through the pain and hurt…and survived it….I can help them to know that they also will survive.

It has been 2 days since I wrote the post and I still keep thinking about those first days. So much has changed thanks to the Crohn’s. I was a shy kid growing up. I didn’t have the best self-esteem and I was very unsure of myself. I was an average student and never knew my purpose in life. College helped me a lot to discover who I am, but my Crohn’s helped me become who I am. I had to get courage to overcome it. It helped me to speak up and speak my mind. I directed me where to go in my life because as we all know, a lot of what we do, we do tailored around the disease. When I got sick last year and then started doing research on IBD, again it moved me into a new direction. Here I am now, toting my wisdom and trying to help others.

I grew up alone with the disease. Back in the 80’s no one knew what IBD was. Worst of all, there weren’t many treatments for it. There was no internet so it was very hard to find people with the disease. All that I learned about my disease I learned through pamphlets from The Crohn’s and Colitis Foundation of America. They helped…but never really taught me about my disease. I grew up ignorant of what I have.

Now, things are different and websites like The Gutsy Generation exist. No one has to go at their disease alone anymore. All they have to do is reach out. The last paragraph of my post for TGG sums up my feelings and I will end this post with that paragraph:

“As I look back into the mirror, I can still see that 15-year-old. The lines are growing. The hair is changing. But I can see him in the eyes. I see the twinkle. I have made it 24 years with the disease. No matter what happens…I can live life. The disease hasn’t beaten me…and it never will. And that is the best advice I can give anyone….Never let it beat you…you are too strong.”