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My New Digestive System

By — One of many Ostomy Wound blogs on SmartLivingNetwork.com

Fair warning if you're used to my other blogs: this isn't about gardening.

The Setup

In June, I was diagnosed with colitis; likely Crohn's disease, but possibly ulcerative colitis (UC). The colitis was being caused by my immune system attacking my colon, and it gave me a ton of bathroom issues and pain. I started taking a steroid medication to help keep my immune system from doing that, and it helped. It unfortunately had side-effects like terrible acne, irritability, and made me feel hyper much of the time.

After a few months, my doctor wanted to put me on a more heavy-duty medication that further disabled the immune system. I felt that the medication was unsafe and didn't feel comfortable with the risks associated with it; instead, I was prescribed an anti-inflammatory medication mainly used to treat Crohn's and UC.

The Flare-Up

Inflammatory bowel disease (IBD) can "flare up" at times, causing worse symptoms than usual. Around the beginning of September, I had my first major flare-up of what I thought was Crohn's disease. Upon consulting with my doctor's office, I increased the steroid medication. I also did what others with IBD recommended, and limited myself to liquids and soft foods.

When those steps didn't help and I was still in pain, having fevers, and feeling dehydrated and tired, I ended up going to the emergency room at my local hospital.

Surgery vs Medicine

My condition was monitored and I was kept on IV nutrition for a week in order to give my digestive system a chance to recover and rest. Unfortunately, those measures didn't help as much as they have in other cases, and I was left with a choice: surgery to remove my colon or "rescue medication".

The rescue medication had many of the same risks and side-effects as the immunosuppressants I mentioned above, and made me uncomfortable. Additionally, x-rays and scopes of my digestive system showed two major points:

With that knowledge, a second opinion from another doctor (for good measure), and some solid research on my two options, I asked for a surgical consult. Within a week of going to the emergency room, I had my surgery: a total colectomy with ileostomy.

Cured!

A colectomy (removal of the colon) is sort of considered a cure for UC. Without a colon, there's nothing for the immune system to attack, and everything is kind of back to normal. I say "kind of" because now I have an ileostomy. An ileostomy is where the ileum (end of the small intestine) exits out of a hole in my stomach. The hole/protruding bit of ileum are called a stoma. I have to wear an appliance on it, but it doesn't feel anything and is hardly noticeable under my clothing.

I can eat just about anything I want now without fear of excruciating pain or bathroom troubles. I do have to take in more salt and water since those were things the colon helped absorb before, and now the stomach and small intestine have to do some double duty. There are also a few foods to avoid, since they're things that the colon used to help digest, like high-fiber foods, nuts, and popcorn.

Points to Take With You

I had a lot of help and support from friends and family through my ordeal, but I learned some things that are useful for anyone with IBD, or any illness for that matter:

  1. If you don't feel comfortable taking a medication, you don't have to take it. The world of medicine has many options for treating different illnesses in different ways, and you should never be stuck with only one option.
  2. Likewise, you have the same options when working with doctors. At any time, you can always opt to find a new doctor if you're uncomfortable with your current one, or even if you just want a second opinion. A second opinion is especially good because it can either back up a decision you and your doctor were leaning toward, or alternately it could unearth new options your current doctor had not considered.
  3. Always get as much information as you can, especially before making major, life-changing decisions. before choosing surgery, I spoke with my general practitioner, two different gastroenterologists, two surgeons, and friends and family that also have IBD. I also did research online, seeing how a few bloggers with IBD dealt with surgery or with medications, and looked at what major universities and health organizations (such as Mayo Clinic) had to say on each choice. With all the information I had, I was able to clearly list the pros and cons of each choice, and I was confident in my decision.

In a perfect world, no one should have to deal with a chronic illness like IBD. IBD is rough, but it doesn't have to mean the end of a normal life, and I hope that sharing my experience and my three tips will help.


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