Crohn's and Colitis Awareness Week

Every year, from December 1 through December 7 is Crohn’s and Colitis Awareness Week. Crohn’s disease makes up part of IBD - Inflammatory Bowel Disease - which is made up of Crohn’s and Colitis, as well as Ulcerative Colitis.

IBD is a group of chronic intestnal disorders characterized my inflammation of the digestive tract. For Crohn’s disease, that means from mouth to rectum/anus. Ulcerative Colitis is usually kept in the colon, rectum, and anus. Some symptoms include abdominal pain, diarrhea, constipation, fatigue, and weight loss. Of course, there are other symptoms. The conditions of IBD are caused by an overactive immune system that attacks the gut. There is no cure, but treatments like meds, diet changes (possibly), and, finally, surgery can help manage symptoms and the disease into remission

I was diagnosed with Crohn’s disease in 1996. I had symptoms before then: abdominal cramping, leg cramps, diarrhea, and not just diarrhea, but bloody diarrhea. The toilet bowl was covered in blood. Yes, a little bit of stool, a lot of blood. I have Iron Deficiency Anemia, and have had multiple blood transfusions. That is how much blood I was losing. I was so weak, I could hardly walk by myself. At one point my father had to carry me into the er. I still have to get iron infusions every so often, because I cannot tolerate iron tablets, and honestly, the iron liquid that you drink is nasty as fuck!! So, iron infusions is what I get. One time, I experienced anaphylactic shock.. My throat closed so fast and i was gasping for breath. Egg was sitting next to me and saw my obvious distress. She got the nurses, and they slapped me with two epi pens, which finally opened my airway, as I gulped in sweet air, relief flooding across my face. Scary, no??

I have taken just about every medication that is on the market, excepting any that have come out within the last two years, as I have been on RInvoq for almost two years. Usually meds crap out on me after two years, so we will see how the RInvoq works. So far, so good. But, back to the beginning

I started my med journey by taking Prednisone for 6 years on and off. 3 years on, and if you know anything about prednisone, then you know about the bloating, the acne, but worst all, the extreme mood changes and swings. I also took mesalamine, pentasa, sulfasalazine (Amino salicylates - used for milder conditions, and often the very beginning of the med regimen, at least in 1996.) Next, is the corticosteroids like prednisone and budesonide. After these fail (at least how I had to do the step up method, whereas now, it is usually at start on biologics.) Next, we have immunomodulators, meds like azathioprine, methotrexate, and 6-mercaptopurine. Next up is biologics. And this is where a breakthrough of sorts happened. Instead of doing the step up management of meds, docs have been going straight to biologics, and adding adjunct meds, if needed. The first biologic released was Remicade, and I remember in 1998, while at the College of Charleston, I walked into an infusion room, lonely and scared. They put an iv in, and infused the medication over some time, either an hour or two. That was the gold standard at that time, but it was super expensive, and there were not a lot of discount programs. After Remicade, came another breakthrough - injections one could do in the privacy of their own homes. Now, some people still went in to have the nurse inject them, but I had Egg. And every two weeks, she injected me. More biologics showed up on the scene, and I was a lab rat for 3 of them. Yes, I was in three long-term studies for three different biologics.

Rinvoq is different in that it is a pill, and I have gotten away from the needle (at least, for Crohn’s.) I have had a bad record of meds failing every two years, so we will see how long this one lasts.

Surgeries - The most common surgery for Crohn’s disease is a small bowel resection. This is where they will take the diseased part of the intestine out, and then rejoin the intestine where they were cut. Relatively simple, right. Wrong. Anything can go wrong, and in 2007, I almost died from this surgery. I was in the ICU for 6 days. My family was called to my bedside. All very scary, and I think I have blocked most of that time period.

There are surgeries for multiple problems. I am sure yall have heard of ileostomies and colostomies. Strictureplasty - which is when there is a narrowing in the intestines. There are surgeries for perianal disease and so much more than I will touch on here.

So, I could write for hours and hours - but I won’t, lol. Instead, I am going to drop some pics and memes for more understanding.