IAMA 19 year old girl living with an ileostomy.
If you don't know what an ileostomy is I will explain briefly. It is a small opening constructed by bringing the end of small intestine out onto the surface of the skin. Intestinal waste (aka Poop) passes out of the ileostomy and is collected in an external pouching system stuck to the skin. Ileostomies are usually sited above the groin on the right hand side of the abdomen. I've been living with this since May 19th, 2011 and it has been difficult getting used to living with this thing on my stomach. It did however save my life so I cannot really complain.
Here is my story. I think I've always been sick, but it wasn't severe until 3 years ago. First my family doctor diagnosed me as lactose-intolerant, so I cut dairy products out of my diet for 6 months before going back to her to say nothing had changed. After that I decided to see a naturopathic doctor, a doctor who prescribes natural medicines. She did not have a straight forward answer for me either but had me take all these different pro-biotics and herbs. Certain things seemed to help but over all I was still experiencing the same symptoms.
Finally I had a Colonoscopy. This revealed massive ulcers all through my large intesting(colon). This lead the doctor to believe I had either Ulcerative Colitis or Crohn's Disease, unfortunately the ulcers were so bad that he was unable to diagnose it as one or the other. So I started taking steroids (not the baseball player with a complex roids). I was on these steroids for about 6 months, the side effects sucked. Massive weight gain, puffiness, mood swings, kind of like PMSx100. After that 6 months the doctors decided to do another colonoscopy to see if the steroids had been working. They hadn't.
The next step was a chemotherapy treatment called Methotrexate. This continued again for 6-7 months with even worse side-effects, nausea, abdominal pain, fatigue, fever, dizziness, and slight hair loss. Nothing changed during this period of treatment so I began treatment of two other drugs, first Remicade then as a last effort, Humira. Remicade was a treatment done through IV every two weeks and Humira was self-injected over the same time period. After 5 months of these treatments my specialist concluded that neither of these drugs were changing my health for the better, and I had gotten worse over the period of time that had passed while taking all of these different medications.
The final step to be taken was to have my entire colon removed and replaced with an ileostomy. May 19th, 2011 I went into surgery, I really would not be able to explain much from that day or the two that came after it. All I know is what I was told about it and what I can remember.
What I remember is not being able to stay awake, and a lot of throwing up. At this point I had developed toxic megacolon (also known as toxic colitis), meaning that holes had developed in my colon that was allowing the waste passing through to seep into the rest of my body. I was rushed into emergency surgery that lasted 4 hours. The last thing I remember for that day was that the anesthesiologist was having issues putting me under because I couldn't stop throwing up, she asked to take one deep breathe, and that was it. I don't know exactly when I woke up in recovery but I remember it was not pleasant. Catheters' suck.
The first thing I remember doing was touching my stomach. There was this thing there, a bag, attached to my skin by a small circular flange. Over the next few days I had to start eating again, not fun considering the constant nausea. After the few days in recovery I was sent to another area of the hospital for more recovery and physio. That took two weeks. I remember one day in particular where I must have eaten something bad because I threw up, a lot, and let me tell you that when you have a belly full of staples, throwing up is even worse then it normally is.
So the entire recovery process took about two months. Now I'm eating normal food and able to have a life outside of spending 12 weeks in the hospital. I graduated high school, something I didn't think was going to be possible after missing so much school (in my grade 12 year I spent a total of 48 full days in school), and I went to University. It's almost been two years now and I am feeling good. My doctor told me that I am a good canidate to have reconstuctive surgery (j-pouch), which would mean getting rid of the ostomy, something that I am seriously considering.
This is the first time I've written all of this down and I thought, "hey what better way to share it then on reddit?" so I could hear everyone else's stories and share mine as well. I'm sure there are things I've forgotten or just left out entirely but this is way longer then it should be anyways. Thanks for sticking with me and if you have any questions go for it!
EDIT: Wow this is crazy! Thanks to everyone for your support and questions! I have to work now but I will return later and try to answer more questions! Thanks again! :)
EDIT2: Just wanted to make a note that I really appreciate all the encouragement I've been getting from everyone. There are rough days, so I guarantee I'm not always as strong or happy as I may come off in this post but I really really appreciate everyone's comments! I will continue trying to answer as many questions as I can. And my apologies to anyone that may feel grossed out, that was not my intention in posting this at all.
-If you have a specific question that you don't feel comfortable writing as a comment and I didn't get too it as a PM feel free to tweet me too! (@lynN34m4CK4Y) I'm still responding to questions so I'll try my best to get to everyone! I'll be as honest as I can with all questions :)
- Many people have asked for a picture. I did not post one originally because I did not want people to feel grossed out. I will post one now but here you go: http://imgur.com/WlLzt Please do not be rude. I am only posting this for the people that are actually curious, not those just trying to be mean