ILEOSTOMY

Since I lived with an ileostomy, its only fair to devote a blog to it. I realize that at first thought it seems gross to have your poo coming out into a bag on your stomach. However, I must point out that there are a lot of people who live with an ostomy- and it is NOT the end of the world! Life goes on, even when something drastic happens to a person's anatomy. Given the choice, anyone would most likely choose to be “normal”, but sometimes we must accept reality and move on with life...

Living with an ileostomy was quite an adjustment for me. Its not something I liked to talk about because it was pretty personal stuff! Barely anyone knew that I had one and I wanted it that way. I didn't want anyone to view me any differently than before and I sure didn't want any more awkwardness than what I was already dealing with! There was only one time that a friend came barreling over to give me a hug and I quickly had to turn to the side to avert a full frontal SLAM...How do I put this?... “Stop, I am DELICATE!”

EMBARRASSING NOISES

Certain foods cause gas, but the air no longer exits out the 'ol rear end. With an ostomy, gas can't be held back, since it exits into the bag. According to my ostomy, Bible study prayer time was one of THE best times for growling digestive noises, and of course- passing gas. Pure awesomeness. Hahaha.

EMPTYING THE BAG – A task that is done about 7-10 times a day. Quite the hassle, I must say. This is an acquired skill that unfortunately requires experience to perfect...if you catch my drift... If you let the bag get too full, it can be a disaster to empty into the toilet. Even if you don't lay enough toilet paper on top of the toilet water before you empty, you will get splashed - by your own yeahhh.... Grossed out? Get over it- I had to LIVE IT.

FOOD AND ILEOSTOMY

Everything I consumed eventually ended up in the bag. Therefore, I had to be very watchful of what I ate. Certain foods cause the stool to thicken up and other foods cause the opposite problem. Based on dietary choices, the bag can get quite heavy, which can be uncomfortable, since it is hanging off the stomach. It was a constant effort to try and keep things the right consistency, so that I would be able to actually absorb the nutrients from my food. I had to be careful though because if things got too thick, I could get a intestinal blockage.

DOWNSIDES

*The smell- The Hollister Brand appliances that I used are the best available. They are “odor proof/smell resistant”, but I always felt like I carried a faint smell around with me. I was probably just imagining it, but then again who knows?

*Obsession with checking the bag. I would constantly be patting my stomach to feel how full the bag was getting. If I was around friends, I would try to be inconspicuous by keeping it empty.

UPSIDES

Don't get me wrong, having an ostomy isn't all terrible. Everything was just so unfamiliar to me at first. All these weird issues that nobody ever warned me about kept a constant shock to my brain. One upside is that there was
*NO urgency to rush to the bathroom anyomore! Sure beats living with Ulcerative Colitis, where I was rushing to the bathroom 10-20 times a day! I mean yeah, if the bag gets too full, it and can be problematic. Overall though, if I needed to empty it, I could usually wait quite a while. There were times that Jim said something like “Lucky, you can poop whenever you want. I don't have that luxury!” That's right, normal peeps, be jealous of all the ostomates out there!
*Built in hand warmer! Our intestines have a very warm body temperature. In the winter if my hand was cold, I could simply place my hand in my pocket and tada- Toasty! and so discreet!

ALL I WANT IS WATER!!!!

Life without a colon to help absorb liquids is tricky! One of the biggest frustrations that I had living with my ileostomy was staying hydrated.. It was a continuous battle...

RULES FOR LIQUID INTAKE

Rule #1 SIP - don't chug. I carried a water bottle with me all day long and would continuously sip throughout the day. Rule #2 Never drink anything on an empty stomach...or it will come rushing through the small intestines and into the bag not long after. The reason for this is because our intestines actually use water to break down the things moving through. Since it literally took more water to process water, I would become DE-hydrated from drinking water. Confused? Yea, it sucked! Some times I would become sooo thirsty and over-do the liquid intake and really pay for it later. The bag would fill up with more liquid than I even drank! How's that for fair?!? When this happened, no amount of potatoes, rice, or any other “stool-thickening foods” could fix it. I specifically remember one night I had this problem...I had to get up every 15 minutes for about 6 hours straight to empty the bag. Eh- who needs sleep anyway, right? Especially not a recovering surgery patient, huh? Helpful tip - If you find yourself dehydrated and frustrated, drink Pedialyte instead of water. I know its intended for toddlers with diarrhea, but all the extra sodium will benefit you in the process.

Rule #3 Always eat food with anything you drink! The food helps absorb liquids. (See explanation above)

TYPES OF ILEOSTOMIES 

There are 2 different types of ileostomies that surgeons constructed from my small bowel. I had an “end ileostomy” after my -->first surgery<-- . With the "end ileostomy" one end of the intestine is pulled out through the abdominal wall and sutured in place, forming what is called a “stoma”. The other end, the end that would travel downstream to your large intestine and eventually out of your anus, is closed off and left inside the abdomen. Food traveled through the entirety of the small intestines and eventually exited into the bag.

After my -->second surgery<-- I had a “loop ileostomy”. Essentially the intestine is pulled through the abdominal wall and slit open. Food travels through the upper half of the small intestines and then into the bag. The lower half of the small intestines were not in use, so that it could heal up from the reconstruction surgeons performed on it! Surgeons left both “ends” of the intestine where they could be easily accessed for reattachment later. The reason behind doing that was to make my next/last “reversal” surgery easy. Both ends would simply be sewn back together, dropped back into the abdomen and the hole where the ileostomy was would be closed up.

"LOOPY"

I named my second loop ileostomy “Loopy”. Why did I give my second ostomy a name, but not the first? Probably because he had so much personality! Loopy was a temperamental jerk; he had lots of problems with rejecting stitches and eroding skin. When I had my first ileostomy, I was able to use flat appliances, which was great. With Loopy though, I had to use a curved appliances, which was less favorable because it tended to stick out a bit more. This made me even more self conscious about what clothes I wore.

ERODING SKIN?

Let me explain eroding skin... With no colon to go through, waste is a lot more acidic and harsh. If the circle of skin where I put my appliance onto was just a tiny bit too big, the surrounding skin would erode. It would literally be eaten up by the harsh waste that would sit on it day and night. Like lemon juice on an open wound...this was just ONE annoyance I dealt with. There are tricks to healing up eroded skin, and I sure wish someone would have mentioned them to me sooner! One of the best things out there for eroding skin (I'm sorry-I can't remember the name of it), is a very, very, literally paper-thin putty (not the regular putty). It is very absorptive and acts as a barrier between the skin and the stool. You can put it right over the eroding skin when you change the appliance, and it should give it a chance to heal up. I got a big square sample of the magical thin putty stuff from a local ostomy nurse. Also eating lots of protein helps things heal quicker! (Chicken, eggs, tofu, peanut butter, etc..)

CHANGING THE APPLICANCE –

Done twice a week, this process took me about an hour at first. Biggest hassle ever. The problem with an ostomy, is that it does what it wants, when it wants. There is no “Pause” button for foods moving through. I found that it was best to change my appliance in the morning, when my stomach was emptiest. Even just drinking a sip of water, it filters first through the intestines and then onto other organs. I spent HOURS in the shower, crying and pleading with my ileostomy, “Please be nice, please, please??” I would yell and scream at the red knob on my tummy. There were good days and bad days, but I had the bag change down to a SCIENCE near the end!....

THE ART OF BAG CHANGE

(A few tricks I feel obligated to share)

Here's what my morning looked like on days I was due for a change:

1. Take 2 Imodium (to slow things up) 30 minutes prior to breakfast.

2. Eat a small portion of hash browns for breakfast (to thicken things up). NO water or liquids, except that used to take the Imodium with.

3. Wait 30 minutes and then hop in the shower. If you follow my directions, there is an optimal time frame in which you can clean your skin and have nothing coming out of the guts, but it doesn't last long.
4. Have as much prep work done before you get into the shower as possible! I actually had a side table set up to the side of the shower, with all my stuff on it, ready to grab when I needed it. (Adhesive remover wipes, putty, clean bag, sticky wafer circle, stoma powder, scissors, etc...) Have the circle cut out to the right size ahead of time, and have the putty rolled out and stuck onto the circle.

5. Remove the old appliance taped to your tummy! Like ripping a big band-aid off a wound– I found that adhesive remover wipes helped a ton. Actually I can't imagine not having them!

6. Clean the skin and stoma (ostomy) with mild soap. I used Dove unscented liquid. Side note- Hot water for some reason stimulates the guts, so don't be surprised when your “empty” guts start waking up. Side note - Some times I would be showering and forget that I had my insides on the outside. There I would be, enjoying a nice, relaxing shower and would accidentally run my hands down my stomach and then remember, “Ow, my intestines are stitched outside!” Always a horrifying moment, getting freaked out by reality! Haha!
7. Turn the water off and pat the area dry. If you don't get the appliance onto clean, DRY skin, your bag WILL leak- and nobody wants stool leaking onto their clothes. Thank God this only happened to me a couple times. The seal has to be PERFECT or you will re-live the same time-consuming frustration all over.
8. Patience- Don't get too frustrated. Sometimes my ostomy decided to start making a 'mess' right when I was 2 seconds away from being finished. GRRRR. Sometimes I just had to grab another fresh set of stuff and start all over.
9. Have a nice day and remember to drink some liquids to make up for not drinking earlier!

THINGS I MISS: (A list I made after surgery #1 when I was annoyed with having the bag)

*Independence- Not allowed to drive my car until 6-8 weeks after surgery.

*Having an income- I was a waitress, and since lifting was a restriction, I was moneyless. 

*Clothes- Imagine that there is a lopsided bag attached to your tummy and everything you wear only seems to make it MORE obvious. I literally lived in sweat pants, hoodies and baggy t-shirts, and my puffy vest. Comfy?- Yes. It was a bit of a struggle to feel womanly though, as I was 'scrubbed out' all the time. I really wanted to buy “Pajama Jeans- (the ultimate lazy person's pants), but my fiancee claimed he would disown me of I bought them. Haha! For the record, I still want pajama jeans!

*Sleeping on my stomach- Not an option when you have a bag perpetually filling up with “stuff” on your tummy.

*Sleeping through the night – The ostomy bag fills up overnight with gas. I would have to sleep-walk to the bathroom every night to empty my 'balloon' full of air and stuff. I'd heard nightmares of people's bag 'taking lift' while they were sleeping. I thankfully never awoke to this horrible scenario.

*Responsibility and busyness- My -->Recovery<-- time between each surgery was 12 weeks, times 3 surgeries = 36 weeks total. That's 9 months of being bored and broke!

*Snowboarding- One of my greatest joys. Only in my dreams this season!

* Cleaning- (Yes, I'm one of those weirdo people who enjoy domestic tasks)

SIDE STORY: Three weeks after surgery I decided that I should be ambitious and clean my kitchen cupboards, as we had found evidence of mice. [BAD IDEA]: DO NOT REPEAT my mistake! I ended up PULLING A STITCH... Never had I been in so much pain! It felt like a knife was tearing me from the inside out when I would move. Do you think I took it easy after my next 2 surgeries?? Yup, strict laziness was the new standard!! 

* Drumming- the 'ol Pearl drum set collected dust. So many times I want to bang out my frustrations on my drum set. Not recommended for the healing abs though! 

*Guitar – Poor Taylor slept in his case for over half a year. Too much awkward bending and twisting involved, not to mention the ostomy bag on the side of my body that the guitar body would lean against.

SCARS

My scars look pretty good today! I am pleased with how beautifully they healed up. The lower scar above my pelvic bone is where they took my colon out and did all their laproscopic internal reconstructing. The scar above my belly button is from a drainage tube left in after surgery, along with the other random scars all over my tummy. The scar to the right of my belly button was obviously where my ileostomy used to be.

I know this was a long blog, but I hope it can be helpful to somebody out there and if nothing else, I hope it has opened your eyes a little wider. 

Update: Scars 3 Years Post Takedown