Greetings and salutations, readers.
So, in my last post I provided a general overview of the procedure ileoanal anastamosis, more commonly known as j-pouch surgery. Due to my severe case of ulcerative colitis, I elected to have the surgery done. During the first step of the surgery, I had my entire diseased colon (large intestine) removed, the j-pouch formed, and ileostomy created. Not all surgeries go down like this; I am speaking purely from own experience. This is going to be a long one (it required some digging for relevant information from my blog archives), so I have placed in bold some key points if you want to skip to a specific segment you have questions about.
WHAT IS AN ILEOSTOMY?
Sometimes the phrase “Show Don’t Tell” really comes in handy. I found this amazing animation on Youtube that can give you a nice, simple look at the medical aspects of a standard “Brooke” ileostomy (which is what I had). If you want to skip ahead about 2:00 minutes into the video, that’s when they start showing you the ileostomy itself. The first part simply gives you a general look at the digestive tract.
The ileostomy essentially gives your poop a place to go while your body recovers and heals with the j-pouch in place. Yes, it may seem really freaky. At first, hell yeah it is. The stoma (the part of the ileum that is exposed through the abdomen) moves and dips and makes noise. It’s alive; it’s a part of you on the outside. I would definitely give that a 10 out of 10 on the freaky scale.
The waste that will come out of the ileostomy will be softer and runnier since the food is only partially digested. Things like potatoes, applesauce, and rice have a tendency to bulk it up if the bowel ever gets too loose. A bag is worn over the stoma and attached with either a ring (it’s like a giant ring of glue) or a more traditional adhesive. Bags can be transparent or opaque. Some people like to keep an eye on things. I myself always opted for opaque (I could never get over seeing the stoma pushing out waste. It always icked me out). There are one piece systems (Bag with adhesive attached) and two piece system (Bag and adhesive separate). I liked one-piece better. Less to fuss with. You just cut the adhesive wafer to fit the shape of your stoma, remove the appliance you are currently wearing, gently clean around the stoma with warm water (never rubbing alcohol…ouch), dry off, and apply. You usually have to change the entire system every 2-4 days. It depends on how your skin reacts to the adhesive and how well it is applied. I struggled with the system a lot at first (even with the help of the ostomy nurse and my mom). I found a groove and did it on my own after a couple months. You have to empty it a few times a day (varies with how much you eat). There are a few good brands: Hollister, Convatec, Coloplast, Nu-Hope. I mostly used Hollister and Convatec and had good experiences with both. There are tons of videos on Youtube showing how to empty and change your ileostomy bag! Take your pick; they are in abundance. I love the internet! I wish there had been more of these when I was going through my surgery. It is nice to see more people sharing their experiences.
You can check out all specifics on ostomy suppliers here: http://www.ostomy.org/ostomy_info/suppliers.shtml
TEMPORARY OR PERMANENT ILEOSTOMY?
Like the video said, it can be either temporary or permanent. In my case, it was temporary (although due to a number of insurance battles, I lived with my little ileostomy roughly two years). Depending on your condition, you may only have the ileostomy for 3-6 months. You never really know if it will end up permanently a part of you until the ileostomy takedown. Doctors give you the opportunity to live with the j-pouch (unless there is some circumstance that prevents you from being able to use it) and if for whatever reason it does not work out, they reverse the procedure and create a permanent ileostomy. I do know a few people who have permanent ileostomies. And you what? They are the most badass people I know. No joke. One of my buddies travels the world, climbs mountains, jet skis, and parasails with his ileostomy. You can run, swim, jump, climb, play, anything and everywhere! Suffice it to say, while an ileostomy may seem like a obstacle, it really doesn’t dictate who we are as individuals or what we can accomplish. The limitations lie mostly in our heads. Which leads me to…
Don’t get me wrong. I am not trying to diminish the impact an ileostomy can and does have on one’s life. If you look at some of my posts from my first post-op, you will easily find in my words the fear, depression, and doubt associated with my ileostomy. It was with time I learned to adapt. That’s really what it is about. Adapting to a new lifestyle. Whether it be for a few months, years, or the rest of your life.
I like to think of the ileostomy as a baby. It needs to be changed frequently. It will make funny noises when you don’t want it to (sometimes it sounds like burping or a small fart; it varies with what you eat). You will probably name it (you should, humor always makes everything better). You will probably talk to it. And you will most certainly yell at it. Frequently. You can never get it to do what you want it to do. Because you really have no control over it. The thing is though: that’s okay. There is a balance that occurs. A mutual respect even. An understanding. You may hate it at first. You may hate it for a long time. It won’t always be that way.
Here is what I learned: https://stephlws.wordpress.com/2008/09/30/ostomy-educational-theatre-and-ileostomy-life-as-i-know-it/
I will say this, if you drink lots of carbonated beverages (soda pop, beer), you’re in for a 24 hour symphony of toots from your ileostomy! It is loud! Also your ileostomy inflates like a balloon. It is a sight to behold. Amaze your friends! I took soda pop out of my diet right away and it actually did me a world of good. I haven’t had soda pop in years. I don’t miss it honestly. So consume at your own peril. It is fun to experiment with food. Drinking/eating dye colored food is a riot. Spaghettios sometimes come out whole. It’s a kooky exercise in amusing yourself. I found I could eat most things. Raw food was a lot tougher on me (it isn’t really since I have had the j-pouch though). I had snacks in my purse and a bottle of water most of the time. It is easier to become dehydrated so water was my best buddy (still is, actually!). Alcohol is a lot harder on your body. I wouldn’t recommend getting wasted with an ileostomy. I did…Ugh. Just no. All day long. NO. Blockages can occur with certain foods. I will talk more about blockages later. While eating, chew slowly and deliberately. Drink lots of water. Be wary of the diet sheet your doctor will give you once you are discharged from the hospital post surgery. Keep it on your fridge. Follow it. Lots of people I have encountered who had issues were trying to eat sandwiches and fries right out of the gate. Dude…seriously? I know once the appetite returns you feel like you could eat anything. Resist the urge. Trust me. Just like everything else, your body needs time to adjust to the major changes that occurred. You will be able to eat most foods. It will be different for everyone. Trial and error. A food diary is an awesome tool to keep track of things as you recover and start eating normally again. Post op, your body is going to say, “What did you do? What is this shit?” And it may protest for a while at first. It may mean pudding, jello, broth for a week or two but it’s better than being fed through a tube in your nose after trying to down that burger. You will get there, as always, with time. A pattern is emerging! Time. Curious thing. Also a douche sometimes.
Pre surgery, I already bad body image. Older and wiser have I become. I like myself (most days). You may struggle with it like I did at first. My fashion sense evolved as a direct result. I had to turn it around. What can I do to make myself feel better about the way I look with this little bugger on my belly? I wore lots of lacy high waisted panties! Retro is in again. They are easy to find nowadays. So damn comfortable and great for concealing the ileostomy. It helped give me that boost of confidence I definitely needed while wearing my ileostomy. Function and fashion. Flowing dresses, tunics, and draped tops became staples of my wardrobe. I soon found clothing that I felt comfortable and confident in. Later on, I grew more daring and started wearing fitted tops and jeans again. Time changes your perspective, or as I like to call it “I stopped giving a fuck and started wearing what I wanted.” It felt pretty sweet. Liberating, even. I haven’t looked back since.
Intimacy is impacted greatly. I have a post dedicated to my journey on that front. Check it out here: https://stephlws.wordpress.com/2009/01/02/lets-talk-about-sexwith-an-ileostomy/
I have links within that post regarding these awesome ostomy covers that one can wear during intimacy. It was probably the best purchase I ever made with my ileostomy! It tucks everything in so you don’t have to worry about it all while you are getting up close and personal with your partner. They are outstanding. I go into detail on how I got myself back in the saddle and dealt with the awkward, strange new world of sex post surgery.
Going places with an ileostomy is not bad at all. I was absolutely terrified of going out in public with my ileostomy. Questions like, “Are people going to notice? What if it makes noise? How will I change it in a public bathroom? What if I have a leak?” You get over it; have a backup bag at all times (either in your purse or car or both!). That’s why I had the surgery in the first place. So I COULD go out again! Not stay cooped up in the damn house while the whole big world was calling for me to jump back in the pool. I flew a few times long distances with my ileostomy and as long as you go prepared, you’re absolutely fine. Medical equipment in your carry-on is a non issue. I always kept a doctor’s note in my purse just in case but no one ever stopped me.
Investigate tips and tricks on travel from my post here: https://stephlws.wordpress.com/2009/01/21/traveling-with-an-ileostomy/
Blockages can occur from time to time if one is not careful. Actually, even if you are careful blockages can still happen. You may hear horror stories of folks who had blockages and had to go to hospital. All I can say is, pay attention to your food and how you eat. Take everything slow, at turtle speed, I’m serious. Even in a perfectly healthy ileostomy situation either something just disagreed with you, you didn’t chew something well enough, or you ate too much of something (I have done all three). Unless you are bleeding, vomiting, or haven’t had to empty your ileostomy for a few hours, you can work most small blocks out yourself.
Tips and tricks from my own experience with blockages here: https://stephlws.wordpress.com/2009/07/01/how-to-deal-with-a-blockage/
Post op, you are slow to move at first. Walking will be your go-to. It is the easiest and most efficient way to get your body back in gear. It helped me tremendously the first few months. I’d walk everywhere, all the time. I graduated to yoga. I have lots of friends who do pilates and weight lifting. I mentioned my friend with the permanent ileostomy who is basically a daredevil. In time and with care, you can definitely ease yourself back into a healthy physical state of being. It’s good to consult the good doctor about any plans you may have first. Base covered is usually a good bet. I have made yoga a daily practice to stay more in tune with my body. It has helped me be grateful for my body, health, and peace of mind. It has given me an outlet to conquer my depression. The mental and physical benefits of yoga cannot be stressed enough. I highly recommend giving it a go! You may find something else that suits your fancy. I have another j-pouch friend who does belly dancing!
Here’s a great easy little 20 minute yoga practice you can do every day to help with digestion. I love it! And it would be great to warm yourself up after surgery too! If you’re interested:
Well. Damn. If you’ve stuck with me this long into the post, congratulations! We did it. It’s over.
Lesson for the day: temporary ileostomies are part of the transition on the long road to recovery. They are part of the solution. That is the best way to look at them. The rest is up to us as patients, as humans, as living, breathing beings with dreams to accomplish and hearts to love, to accept and adapt with them. Then our worlds can keep on turning so we can keep on living it up as much as we can.
Hope this has been helpful to you all, and as always, best of health!