Today is Tuesday, May 19th 2015 and it’s World IBD Day! What exactly does that mean? No, it’s not a day to celebrate Inflammatory Bowel Disease. Honestly, outside of all the great people that I now consider to be part of my IBD family I can’t think of another reason to celebrate IBD. It’s a horrible disease that wrecks havoc on every part of your being… Heart, mind, body, and soul. Instead, it’s a day to raise awareness so that the general public will understand a little better what those suffering with this disease go through.
First, let’s talk a little bit about what Inflammatory Bowel Disease is. IBD is an autoimmune spectrum disease. While researchers believe there could be hundreds of different kinds of IBD, it is mainly comprised of two particular diseases, Crohn’s Disease and Ulcerative Colitis. Crohn’s Disease can affect any part of the gastrointestinal tract ( Mouth to Anus ) while Ulcerative Colitis mainly affects the Large Intestine / Colon. Basically, your immune system is attacking itself which causes inflammation throughout your GI tract.
What are some of the symptoms / effects of IBD:
- Severe Anemia – So severe that Blood Iron transfusions are needed at times
- Severe Fatigue – While you might feel fine one day, just brushing your teeth the next day can be an extreme challenge
- High Fevers – Fevers can range anywhere from 100 degrees to 106 degrees on any given day. My son, at the age of 6, dealt with 106.5 degree on more than one occasion.
- Strictures and Blockages – Because the inflammation builds up and narrows your intestines, strictures and blockages can be common. Extreme pain plus the need to surgically repair the strictures and blockages can be necessary.
- Severe Pain – Did you know that the inflammation caused by IBD can move to your joints as well, causing arthritis, rheumatoid arthritis, plus a host of other joint pain and swelling.
- Surgeries – Surgeries can be common for those living with IBD. For Crohn’s Disease patients, having to undergo multiple surgeries to remove parts of the small bowel due to strictures is common, which can leave the patient with short gut syndrome. For Ulcerative Colitis patients, it can mean removing the entire Large Intestine / Colon, a vital organ. In many cases, it can leave the patient with needing an ileostomy or a colostomy.
- Extraintestinal Manifestation – This is prevalent in both Ulcerative Colitis patients and Crohn’s Disease patients leaving them with ocular problems, renal problems ( perianal disease ), fistulas, and even pulmonary problems.
- Severe Depression / Anxiety – Did you think that IBD just affected the physical body? Not even close! It attacks the patient mentally and emotionally too! Leaving the patient depressed, full of anxiety, feeling alone in the world, and completely embarrassed. So badly, that the patient will do anything to not want to leave their own home.
- Frequent and Urgent Need to use the Restroom – The frequency can be so often that a patient can use the restroom 20+ times a day. In a lot of cases, this leaves the patient unable to sleep at night because of how many times they are going all day / night long. Frequent accidents as the need to go is so strong and quick that even a bathroom 5 feet away isn’t close enough to ensure an accident won’t happen.
What are some of the treatment options for those living with Inflammatory Bowel Disease? Because there is no known cure for IBD ( or a known reason why someone gets IBD ) the best a patient can hope for is a treatment plan that will put the patient into remission. IBD is NOT a “cookie cutter” disease. Meaning, that what works for one IBD patient, might not work for another. It can take long periods of time ( sometimes even years ) to figure out what will help put a patient into remission, leaving the patient suffering in the mean time. Here are some of the different treatment plans as of today:
- 5-ASA’s – Also known as Aminosalicylates. Some of these drugs are known as Asacol, Lialda, Pantasa, Colazal, and Dipentum. For some mild cases of Ulcerative Colitis and a form of Crohn’s Disease called Crohn’s Colitis these meds can be helpful. The side effects from these meds include digestive distress, headaches, kidney and pancreas problems.
- Corticosteroids – Or also known as the “evil” Prednisone. The drugs are usually used for moderate to severe Ulcerative Colitis and Crohn’s Disease, and while it can be effective in helping to control symptoms, the side effects of this med can be devastating, especially over long periods of time. A puffy face ( also known as Moon Face ), excessive facial hair, night sweats, insomnia, and hyperactivity are just some of side effects from steroid use.
- Immune System Suppressors – These more serious drugs are used to treat moderate to severe Ulcerative Colitis and Crohn’s Disease. These drugs include Imuran, Remicade, Humira, Simponi, Entyvio, Methotrexate, and Stelara. Each one of these drugs carry their own side effects, but the common one amongst most of them is the chance of developing lymphoma ( a type of cancer ) and other kinds of cancer. They also leave the patient extremely susceptible to tuberculosis, hepatitis B, and infections.
What you need to know about Inflammatory Bowel Disease:
- There is NO KNOWN CURE for IBD – If you search the internet, you might find books or people selling a “cure for IBD”. These “cures” are absolutely FALSE! While researchers are working hard to better understand IBD, find better treatments for IBD, understanding the cause of IBD, and trying to cure it, it has NOT happened yet. Do I hope and pray in my lifetime that we will see a cure for IBD, not just for my son, girlfriend, and the 5 millions other people living with it around the world… ABSOLUTELY! But until that happens, we need to continue to raise awareness and help researchers find the true cause and cure for this disease
- The removal of a vital organ / large intestine is NOT a cure for Ulcerative Colitis – Some medical professionals, non-profit institutions, and others feel that if you remove the large intestine, you essentially cure Ulcerative Colitis. This could not be further from the truth! First, a cure is to return to how life was prior to contracting the disease. There’s no way to return to life prior to Ulcerative Colitis when you no longer have a vital organ like the large intestine / colon. Second, Ulcerative Colitis is an autoimmune disease where the immune system attacks the large intestine. Just because you removed the large intestine doesn’t mean you have fixed or changed the immune system. The removal of the large intestine is nothing more than a treatment option when all other treatments have failed an Ulcerative Colitis patient. Lastly, a colostomy, ileostomy, J-Pouch, and other types of having the small intestine pass stool outside your body have a whole host of there own issues. Abscesses, fistulas, and strictures can still occur. While these treatments can allow an Ulcerative Colitis patient to live a better quality of life after having them done, don’t be fooled that you are “cured”.
- Mental Health – The mental health aspect of IBD is FAR reaching. It not only affects those living with IBD, but it easily affects caregivers, family members, and friends too. There isn’t enough attention paid to the mental health aspect of IBD and that needs to change!
There is so much more that I can talk about to help you understand what life is like with IBD but I doubt anyone wants to read a novel in this blog post. Knowledge is Power and the more you know about IBD, the more you can help! I would ask that you visit the following links to get an even better understanding of IBD outside of this blog post:
- The IBD Round Table Discussion – A monthly podcast that brings together the leading IBD Advocates to talk about Crohn’s Disease and Ulcerative Colitis. There is something for everyone in these podcasts… From the patient, to caregivers, to the general public wanting to know more. Find it at http://youtube.com/fgarufijr and on iTunes at https://itunes.apple.com/us/podcast/ibd-round-table-discussion/id657187444
- JournalingIBD – Marisa Lauren Troy is the found of http://JournalingIBD.org . Living with Ulcerative Colitis for over 15 years and having 14 major surgeries, she is a wealth of knowledge and experience with it.
- Inflamed-And-Untamed – Sara Ringer writes the blog http://inflamed-and-untamed.com along with her IBD videos on YouTube at https://www.youtube.com/user/bedroomdancing911
- Crohn’s Guy – Ryan Stevens writes the blog at http://www.crohnsguy.com/ plus swam Lake Erie to help raise awareness for IBD. You can watch an amazing video of his swim at http://bit.ly/1EDGPkF
- AboutIBD – Amber J. Tresca of AboutIBD is a leading writer / blogger when it comes to IBD. You can find her at http://ibdcrohns.about.com/bio/Amber-J-Tresca-8403.htm
- DanSharpIBD – Dan Sharp, a Crohn’s Disease patient, and IBD advocate is the writer of http://DanSharpIBD.org . You’ll find extremely valuable information on IBD plus a lot about the science behind it.