If you follow me on twitter (@JournalingIBD) or facebook, you’ll see that I have been pretty driven to have The Crohn’s Colitis Foundation of America (and then hopefully the organization in Canada, CCFA) to remove the word “cure” from their website when it comes to ulcerative colitis.

The website says the following about ulcerative colitis:

“In one-quarter to one-third of patients with ulcerative colitis, medical therapy is not completely successful or complications arise. Under these circumstances, surgery may be considered.

This operation involves the removal of the colon (colectomy). Unlike Crohn’s disease, which can recur after surgery, ulcerative colitis is “cured” once the colon is removed.Depending on a number of factors, including the extent of the disease and the patient’s age and overall health, one of two surgical approaches may be recommended. The first involves the removal of the entire colon and rectum, with the creation of an ileostomy or external stoma (an opening on the abdomen through which wastes are emptied into a pouch, which is attached to the skin with adhesive).

Today, many people are able to take advantage of new surgical techniques, which have been developed to offer another option. This procedure also calls for removal of the colon, but it avoids an ileostomy. By creating an internal pouch from the small bowel and attaching it to the anal sphincter muscle, the surgeon can preserve bowel integrity and eliminate the need for the patient to wear an external ostomy appliance.”

Now, the majority of that IS true. But when you say “cured” (even if it is in quotation marks), it gives a false impression to not only the general public but to patients and caregivers as well. The CCFA is the first thing that pops up when you do a google search for Crohn’s disease or ulcerative colitis. So of course, most newly diagnosed patients/caregivers are going to begin there when they are ready to start learning more about their disease.

I won’t go into anymore details about my experiences following the removal of my large intestine in an effort to cure myself because I think I have made my point already in this post: Can Ulcerative Colitis Be Cured?

I did, however, think of something else while watching a video about a medication for ulcerative colitis yesterday.

All of the medications and treatment plans that I went through were put in place largely by my parents and doctors, with me having some say given my age and lack of real understanding.

Thinking about it now, I would venture to guess that I may have just skipped all of the awful medications (prednisone, 6pm, asacol, Remicade, suppositories, etc) and natural grossness that was forced down my throat to “heal” my insides. Especially after seeing how severe my disease was. {Being in and out of the hospital, missing key events including school, taking state exams in the hospital, needing blood transfusions, etc} If I was diagnosed right now at the age of 27, looking at all my options:

1) No meds/Go Natural Way- well all know that doesn’t work for 98% of patients but I am sure I would have tried this first, saw my case was too severe and moved on.

2) Medications- I would be essentially committing to medications with scary side effects for the rest of my life. As a young adult, who is otherwise healthy, why would I EVER want to go that route when I could be cured through surgery? Sure it would be a tough recovery but if what they say is true, it is worth the months of pain and adjustment period. After all, given my age, I could be alive another 70 years (knock, if I am healthy) so why not deal with the problem now so I never have to think about it again? Plus, I may want to have kids someday and being on very potent drugs can’t possibly be good when you are pregnant.

3) Surgery- I am cured. No disease. I have something made out of my small intestine that takes the place of my colon. Doctors told me I won’t even know it is gone aside from not feeling the symptoms of ulcerative colitis anymore (WAHOO!) And I go back to my life the way it was before I even heard of this wretched disease.

Hmmm… this is not really a difficult decision to make.

If you are a newly diagnosed patient, who is not frequenting support pages on social media (which would allow you to see the complications that can and often do arise following a total colectomy), this patient would most likely go straight for surgery. Of course, most GI’s would recommend trying every medication possible before going the surgery route. It is, of course, a last resort. But not if the scnerio/picture I painted above is in your mind. Surgery seems like the best and most practical option for my future if I had no other knowledge on the subject. And let’s face it, the CCFA may be the only resource someone has; at least in the beginning when they are struggling with acceptance and just need some guidance/basic information.

I never want to discourage any ulcerative colitis patient from having their large intestine removed. I don’t regret it for one second. It was destroying me and I would have died with it. I am also not trying to shatter anyones hope that this surgery will be the miracle they are hoping for. And I really and truly hope it is… for everyone. I am just trying to show the reality and raise some awareness and proper education about what so many of us deal with.