World IBD Day (May 19th)!

Today is World IBD Day!

What does that mean? Sharing information, stories, spreading awareness all around the world about what IBD is as it’s an invisible illness.

So what exactly is IBD you ask? IBD short for Inflammatory Bowel Disease is chronic inflammation of the digest tract and includes diseases such as Crohn’s and ulcerative colitis. Symptoms of IBD may include: feelings of urgency to go to the bathroom, abdominal pain and cramping, blood and mucous in the stool, diarrhea, fatigue, and so much more.

Not everyone’s experiences with either Crohn’s or ulcerative colitis are the same and some people may have more or less symptoms with their IBD. Some may very well experience remission for longer periods of times than others. Remission is considered when the disease is not in an active state aka in a flare up. Medication is used to help keep the bowel from flaring up, not to say it prevents flare ups but like my GI had said in the past it’s helping prevent the flare ups from being worse and more often than without medication.

Medications to help reduce inflammation of IBD range from anti-inflammatory drugs (corticosteroids & aminosalicylates), immunosuppressants, and biologics (TNF-alpha inhibitors). Sometimes antibiotics, anti-diarrheal medication, pain relievers, and supplements will also be included with medications to help.

Surgery is usually considered the last option once medications have failed. For people like me, with ulcerative colitis, the surgeon will remove your colon and rectum (proctocolectomy) giving you an ileal stoma in your abdomen where output is collected by a ostomy bag. In most cases after a period of healing time the surgeon will then form what’s called a j-pouch with a portion of your small intestines (ileal pouch anal anastomosis) attaching it to the anal stump and removing the ileal stoma. Depending on the surgeon and how ill you may be, these surgeries may be done in several steps.

My surgeon’s plan was to do a 3 step process, listed below. However, I have only had 2 of the 3 surgeries and honestly not in a rush at this time for surgery #3. I’m loving my little stoma and ostomy bag right now.

  1. Remove my colon and give me a temporary end ileostomy (this stoma sticking out of the abdomen is the end of the small intestines). I was very ill and he didn’t want to put me through more than I needed so he left my rectum for the time being to rest. It still had very active disease but without it being hooked up I wasn’t rushing to the bathroom like I was before.
  2. Remove my rectum, up to the anal stump, form the j-pouch with a portion of the small intestines and give me a new loop ileostomy (since the stoma originally sticking out was going to be part of the j-pouch).
  3. Remove the loop ileostomy and connect it back up so the small intestines are hooked up for me to go to the bathroom like I used to.

People with Crohn’s disease may have a variation of different surgeries, from bowel resections, ileostomy surgery, j-pouch surgery, as inflammation with Crohn’s can be found anywhere from the esophagus to the anus. Most people after surgery will still have to take some kind of medication to help manage their Crohn’s.

Living with IBD has been hard. Hard because it’s invisible and you can’t see what’s going on in my insides. People may have noticed back when I had flare ups, before my ileostomy surgery, me rushing to the bathroom or going back and forth to the bathroom but that’s it as far as physically seeing something abnormal. It’s hard for people to understand that when you say you don’t feel good or that your “tummy hurts” it’s not a normal pain. My colon would cramp up and the pain was excruciating, causing me to be nauseous. It’s hard when people can’t physically see what’s wrong with you. You look ok, so you must be fine right? Wrong.

Life with my ileostomy has been great! Sure, I’ve had some ups and downs including an emergency surgery due to adhesions that had formed behind my stoma, but I no longer have that colon cramping now that my colon is gone. I do still struggle with hydration because I do still have diarrhea off and on. My stoma likes to do things her own way and sometimes I’ll have diarrhea and just can’t keep up with the liquids causing me to feel not well the next day. I’m getting better at managing it as best as I can with medication my surgeon prescribed me to help slow my output when it starts getting looser to diarrhea. I also make sure to use oral rehydration salts that are added to water to help with dehydration.

I hope this post helps give you a better understanding of what IBD is and what individuals with IBD can go through. You may not even know someone is going through this. So, just remember to be kind y’all. It is something that costs nothing and could really help someones day.

Until next time,

Lyndsey

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