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
Haha that gave me such a great laugh! Thank you soo much for that! And yes I am subscribed to r/crohns :)
What's the story with your butt now? Is it all dusty and full of cobwebs?
Haha gross no way! :p Understandable question though. It's kept clean.
Does it serve any purpose right now? Also do you find yourself dehydrated without your large intestine to absorb water?
No there is no purpose to my butt now. Haha. And yeah I have to drink a lot more water then the average person does in order to stay hydrated.
Whoa. You're awesome for being positive. I would probably have fallen into a mega-depression after that.
- any foods that you can't eat?
- how, and how often do you empty that bag? [morbid sense of curiosity etc]
- has it impacted your social life, and if so, how? [getting drunk, long nights out etc]
- what are your emergency plans in case the bag, well, ruptures?
- how is the inside body//outside body site protected from pathogens?
Thanks for the IAMA, it's very interesting. Hope your luck improves, and that you get chosen for the surgery should you want it!
Thank you :)
- There are foods I don't like eating because I don't like the way they process. Corn, peas, carrots mainly.
- I empty the bag whenever it gets partially filled with fluid. I change the appliance itself 1-2 times a week for hygiene purposes.
- I surprisingly have a very difficult time getting drunk because the absorption is not there anymore. Last time I tried to drink was 21oz of alcohol before I felt a "buzz". I do still enjoy my sleep as much as everyone else does though, so that hasn't really changed.
- I always carry an extra pouch and flange with me in case of emergencies.
- The pouch and the flange cover the ostomy entirely as well as some of the skin on my stomach. As far as the inside of my belly, the small intestine itself (which is called the stoma) is brought out and sewed onto my belly so there is no contact with the inside of my body.
Thanks for your questions! Hope I answered them for you! :)
Girls don't poop... ಠ_ಠ
Haha surprisingly you are not the first person to say that to me... Sorry to burst your bubble.
Sorry to burst your bag? O.o
Haha, I see what you did there.
So when you call somebody a "sack of shit" you really know what you're talking about?
You sound incredibly brave. Chin up!
Haha that is true! And thank you very much I appreciate it :)
"If you don't know what an ileostomy is I will explain briefly."
if that was the brief version... I think the long version would make one helluva movie.
Haha it was the shortest way I could explain it without running the risk of confusing people.
Have you stuck your finger in the hole yet?
hahaha eww no :P That would gross me out. ahaha
My wife suffered from UC/Crohn's also. Her story is very similar to yours in that her condition was severely advanced before it was detected/treatment began. She also had to have surgery to remove her colon and had an ileostomy created.
She was also @ 3 months pregnant when she was diagnosed which impacted the treatment options. She too tried steroids and remicade, both unsuccessfully. By the time she was taken to surgery she was receiving 3 units of blood a day and passing it through. She hovered near death for over a month before they performed what turned out to be a life-saving surgery.
What I would like to ask is how large of an incision did they make in your abdomen for your surgery?
My wife had a 14 inch incision running from her sternum to just above her pubic mound that had to be held closed by 10 gauge steel cable/staples.
I'm so happy to hear your wife is better now! That is a very encouraging story. The incision on my stomach sounds the same length as your wife's incision. Mine is still VERY visible.
..Can we see it?
hahaha google it :P
Well then, can't say I am glad I did that.
Haha yeah its kinda gross. Google pictures makes everything more disgusting then it really is.
Some were innocent and educational... then there were some, that I assume, went horribly wrong and look like something out of an 80s horror movie.
Yeahhh some probably look like they met the doctor from the Human Centipede. :P
And then I stumbled upon a collection of "sexy" photos of girls posing with it... so I guess Google came back around full circle.
Haha a friend of mine is an ambassador for IDEAS and Uncover Ostomy and she is so beautiful you don't even see the ostomy.
It is definitely harder to hide at the beach. I've gone with wearing tankini's instead of bikinis just for the extra coverage they give. There are many sites on the internet where you can actually buy speciality bathing suits for girls with ostomies. If you can not live your life to the fullest without the ostomy and it becomes your only option then it is worth the things you need to overcome while living with it. It will be hard at first but I promise it is worth it.
Do you think that seeking help from a naturopath negatively affected your prognosis? It seems like you went an awful long time before being diagnosed properly.
I don't think it was negative but I also don't think it did me any good either. And I went about 8-9 months without an firm diagnosis.
Glad you're OK.
Thank you :)
I enjoyed reading your story and I am sorry for what you had to go through. Why did they start you on chemotherapy? Did they assume you had colon cancer without verifying it first?
Thank you :) They had me on chemo because Crohn's and Colitis are auto immune diseases and chemo counteracts that. Or at least its supposed to.
- You have never felt what weird is until you've felt your stomach fart. And no the bag just expands with air.
- The only time I've ever smelt the poop is when I'm using the washroom, to empty it.
- There are foods I don't LIKE too eat, such as peas, corn and carrots, just because of the way they disgest.
I had to look up what a j pouch was, very interesting. Any reason you wouldn't go down that path?
Just not sure if I want to go through another surgery.
Scanned through it quickly, hopefully no one asked this already - have you been with a guy yet? Are there any physical issues to deal with, or is it all psychological?
For me it was all psychological. I was totally petrified that there would never be a guy that could handle it. I was wrong. There are actually people out there that don't just care about appearances. I've been blessed to find this out and no longer have to deal with the paranoia. Physically there are no intimacy boundaries.
Do you have any religious beliefs?
Technically I am a Christian, although I feel that there are now negative connotations associated with that now. I attend a Nazarene church which was the absolute best thing for me when going through this. It helped me realize that when you go through tough times there are going to be people that will do absolutely anything to help you get better.
Sounds like you've been through quite an ordeal. I have Crohn's disease myself, and know how painful it can be, but my experience hasn't even come close to what you've experienced. It sounds like you're really brave and doing well now that you've had surgery, so that's great!
I know somebody who has ulcerative colitis and had his colon out and had a bag put in, but has now had re-constructive surgery (not sure if it's a j-pouch), and he's doing really well. It of course means further surgery and risk but he's happy with it as far as I know.
Now my questions!
- Are you still in university? If so, what are you studying?
- Does your ostomy cause you many problems in day-to-day life?
- Have you had any embarrassing incidents relating to your ostomy?
- Do you have to take care to make sure that your bag can't be seen under your clothes?
Thanks for your encouragement!
- I took a year off to work, I'm working in a call center and I actually love it. In the fall I hope to go back to school for Journalism.
- As with everything that happens health-wise there are sometimes complications. I've been in situations where I've had my pouch practically bust open on me. But it is much better then what I was dealing with before the ostomy.
- I guess the above answer would qualify as embarrassing which it certainly was. Intimacy was a big issue for me at first as well, just being concerned that a guy wouldn't be able to handle being with someone who has this thing on their stomach.
- Clothing was a big deal for me at first then I realized that I was probably being more paranoid about it then I need to be. I was never the kind of girl who enjoyed wearing skin tight clothes anyways, I've always been a jeans and t-shirt dresser. So not much has changed since then although some kinds of jeans are uncomfortable to wear because of the placement of my ostomy.
Hope that answered your questions! Let me know if there's anything else, I'd be happy to answer :)
You say you've "always been sick," how do you mean? Like sickly in general, or you experienced GI symptoms to some degree all your life previous to this? What finally made you go to the doctor and end up with a diagnosis (what symptoms)?
I mean that anytime I had the flu it did not normally result in throwing up but more out the other end. I finally went to the doctor when I was beginning to pass out due to anaemia because I was losing a lot of blood in my stool.
One of my best friends actually went through the exact same series of events. He said the weirdest thing was getting used to actually using his asshole after his surgery for the j-pouch. Can never have too many poop jokes.
Haha I know right? I always say that if I can't laugh and joke about it I'd probably just cry :P
Do you miss not being able to poop like a normal person ?
Sometimes. I can't even remember what it feels like now :P
Thanks. I wish you the best of luck. You have been through so much, but you bear your scars like a champ. :D
Thank you very much :)
You have my sympathies for what you've been through. I'm almost ashamed to admit that I have Crohn's. Not because of the inconvenient and sometimes embarrassing symptoms I have, but because the severity of my symptoms are a mere fraction of what you've been through.
At least the toughest part is in the past now. Best of luck to you with all that you do.
As for questions...
Can you eat anything you want now?
Do you have trouble absorbing nutrients and/or keeping a healthy weight?
I do eat most things. I don't like carrots, corn and peas because of the way that they digest. And as far as absorption I do take a lot of vitamins daily to make sure I am getting everything I need to stay healthy.
I am on Methotrexate for arthritic psoriasis. It sucks balls.
What a story man. Your way tougher than me. I know a guy that had one of those for a time. I thought I'd kill myself for sure if was to have one.
Hats off to you.
Thank you very much :) Good luck with your treatment!
Def mad props for staying positive. Keep it up, I'm sure I speak for all of us when I say that we wish the best for you : )
Thank you very much :)
All of this must of cost an arm and a leg. In addition to your colon that is.
Plus side to the Canadian health care system :P
You brave soul. I have Crohn's so I know the pain... I'm supposed to start Humira tomorrow actually.
I really just wanted to know if you knew why you didn't react to any of the drugs or not? If you're a good candidate for the Jpouch then you would think some form of medication would have helped you at some point, right? Maybe you were so far gone by the time they figured it out that you didn't really have a choice?
You are correct I did not respond to the treatments properly because my condition was too far gone. I do with you all the luck in the world with Humira and I hope that you are able to live a more full life because of it :)
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