Yesterday, one of my good friends from the Inflammatory Bowel Disease (IBD) community pointed out a few things about the video that was associated with the 23andMe blog. The video is over an hour and it is done in a very easy to understand, informative manner. My problem and where I got a little nuts was… this doctor claimed that your colon is an “extra organ” and your small intestine will just take over following a total colectomy. She went on to say her ulcerative colitis patients couldn’t believe they were cured and how they wished they had not waited so long to remove their large intestine. The sole purpose of the large intestine, she says, is to store water. What about holding stool inside of the body? Umm, that is kind of a major thing.
Now, I know that removing my large intestine was the best thing I could have done. Heck, it was my only option. I do understand that everyone’s views of medication are different and some may want to go straight to surgery instead of dealing with medications. But, studies show that the majority of ulcerative colitis patients would rather be treated with harsh medications including immunosupressants, corticosteoids, biologics, and chemotherapy than have their large intestine removed.
The reason for this is simple: Having your large intestine removed leaves a patient open to the possibility of needing an ileostomy if complications arise.
I understand what this doctor meant in that obviously you can exist without a large intestine. This blog is coming to you from a colon-less gal so no one is debating that. BUT, to make it sound like it is such an easy surgery where you go about your merry way afterwards is disgusting to me. For a doctor to trivialized such a devastating, painful and life altering surgery (and therefore, disease) is terrible.
Also, from an education and awareness standpoint..what is she doing to the community with that lie?
Even my friends with Crohn’s Disease notice they are missing large intestines. Some more than others obviously but still, you notice.
And a colectomy is a major surgery! Usually, it is done in two or three separate surgeries, of which the patient needs to have a temporary ileostomy for a little while before everything can be hooked up. When a patient’s small intestines is ready to be connected to a Jpouch, or the rectum, or a different type of pouch, there is still no telling what will happen. Your small intestine may, theoretically, be able to take the place of your colon but it is not meant to. And oftentimes, the small bowel will react to taking on too much.
I started out getting angry at this whole thing because I was in a bad mood yesterday. Mostly, it had to do with personal things but to see that coupled with not sleeping (largely, I believe because of my ostomy) made everything seem worse. How dare someone say removing your large intestine is a cure? Or even worse, that it is no big deal?!
You guys wanna know what happened to me a couple nights this week? I woke up with sh*t all over the place from my ostomy leaking. Both of these times, I had changed the appliance that night.
Last night, I decided to really try and let go of my fear of the ostomy leaking and just sleep. I took more meds than usual and I allowed myself to fall into as deep a sleep as I possibly could. I slept so much better!
…until I realized my ostomy had leaked AGAIN.
The leak was worse this time too. Lately, I have been quick do the laundry and get rid of any signs that anything ever occured.
So, I ask you Dr. Choi, does this sound like NOTHING to you??
Here’s the video
The part I am referring to is about 47mins in or so.
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