Ostomy Answers; Questions by Noricum

I solicited your questions about what you'd like to know in regarding to what it is like to have an ileostomy, or something like that. I'm still interested in receiving your questions, so post in the comments or send them to me via e-mail.

The following questions come from Noricum, Sock Maven and Shrone Extraordinaire.

1. Do you still have an, um, butthole?
The simple answer is not so simple. I still have what I call "my pucker". My anus is still there, only it doesn't go anywhere. I still have enough muscle left to flex the sphinter. Now, why the surgeon left my pucker behind is a mystery to me. When I talked to other ostomates I was told by one person that she was left "smooth like a Barbie doll" and referred to herself as having a "Barbie butt".

2. How much of your intestines did they remove? Does that affect the shape of your stomach?
All of my colon has been removed. A portion of my ileum (which is the last of the three segments of the small intestine) has also been removed. I do not know how much of my ileum has been removed; however, I do know that the doctor had to remove 8-10 inches during my second surgery of last year.

The shape of my stomach hasn't changed due to less guts inside, but it has changed in shape because I have gained about 15 pounds since my surgery.

3. How does your bag attach? Is there something at the opening for it to attach to? What's the interface between "you" and the bag related bits?
My bag is a two piece system. A flange or wafer is glued to my body with a special ostomy paste. The bag then snaps and locks onto the wafer. The bag has a "tail" which is opened up to allow the bag to drain. I use a bag that has a Velcro closure to make sure it stays closed. The old-fashioned kind of bag used a clip that didn't feel very secure.

The flange/wafer has its own sticky adhesive, but this isn't a very reliable method of attachment. I prep my skin with a protective barrier which is a mild adhesive and kind of like a liquid bandage. The stoma paste helps to protect my skin around the stoma while also sealing the wafer to my body.

4. What are the psychological issues with having your body rearranged like that? How do you feel?
For awhile I was concerned that I wouldn't be able to wear the style of clothing that I prefer, but much of that was solved when I made sure my stoma was placed lower than my previous ones from 1990 and 1995. This made all the difference. I do get a little self-conscious if my bag gets too full in public as I think all eyes are on me, and I have a concern about my bag popping off if I let it get too full (which has happened at home).

Most of the time, about 99%, I don't feel different, and in fact I feel better since having the bag as I'm no longer in constant rectal pain, having to run to the bathroom, or having those issues I dealt with while I still had a functional "pucker". If I eat too much I do feel more bloated than usual and still am not used to the sudden output.

5. Do you think people who haven't been told can tell you have an ileostomy? How do you feel about that?
My assumption is that people don't know. I haven't told anyone at my internship site, just because it hasn't been relevant. I've shared my story at graduate school, just because the environment is right, and sharing it was appropriate and had meaning for me and my classmates.

If people found out about it, I would be open to explaining and answering their questions. I consider myself an ambassador of the bag, as I think it is important to let people know that life isn't all that unusual to wear a bag.

6. How does it affect absorption of nutrients, and whatever else it is that your gut does?
I was concerned at first that I wouldn't get enough nutrition, but appaently I am since I have maintained my weight of over 140 since earlier this year, and I've crept up to 145 and above over the last couple of months. I can dehydrate more easily, so I make sure I drink fluids. My electrolytes can unbalance easily, so I salt just about everything and sometimes take a potassium supplement. I take vitamins just to make sure I get the important stuff as my diet is pretty limited to processed foods, meat, and easily digested stuff.

Vegetables and fruits in the raw are impossible for me to digest. Dried fruits are lethal as they can cause a blockage. I can eat salad in a small amount, along with corn, but I really need to make sure I limit these as they can stop up my bowels. Cooked veggies in a soup pass through without problems--the more cooked the better I am at processing them. Nuts can be rough, so I limit how much I eat of those, and shredded coconut can bunch up.

This might be sharing too much information, but what comes out of me is all liquid. There are times where the liquid is thicker, like if I eat a lot of potato, cheese, or bread. The thickness is like a tomato puree. The only time I have solid particles is when I eat something like corn, carrot, or nuts—all items that haven't been broken down through digestion.

7. What are the most annoying things about having a bag?
There is an itch that can develop around the stoma that can't be scratched. I can rub it gently, but it isn't something that should be dug into as it would losen the wafer.

The odor is annoying, especially if my bag is getting old, just before I need to change it. I'm the only one who can smell it and it isn't pretty.

Having leaks are annoying, especially when I wake up to them. Having to change my bag in public is the most annoying and I make sure my bag is fully functional so I don't need to do the emergency change in a bathroom stall somewhere.

8. Do people ask annoying/stupid questions? (Are any of these annoying/stupid?)
I haven't been asked any stupid/annoying questions yet. Most people who have asked pose very intelligent, yet extremely curious questions. Sex and body image are commonly asked questions.

9. Do people make annoying/stupid assumptions?
Not that I've encountered—exactly. I had to prove to my school that I was healthy enough and capable of handling my internship, school, and life in general as they had concerns my health wasn't stable. I'm not sure if that was because of my surgical complications or because they assumed having an ileostomy meant I should become a recluse. They weren't too happy with my dietary restrictions and wanted to make it out to be that I wasn't totally healthy as my doctor claimed me to be.

I do have certain health risks that I can manage, such as avoiding those foods that cause bowel obstructions. I make sure I keep my skin clean and attend to irritations immediately so they don't become infected or worsen. I make sure I keep myself hydrated and balance my electrolytes, and so on.

10. What effect has having an ileostomy had on your life? (Health, school, etc.)
I don't spend as much time on the toilet. Draining my pouch is like going pee. My bag typically fills up after meals, so I empty it no less than 3 times per day, but I don't know what my maximum is.

I change my bag every 3-4 days. What this means is I take off wafer and bag, remove all adhesives and clean my skin around the stoma. I then do my routine inspection to make sure everything looks as it should look. I then apply a fresh bag. Changing my bag takes about 15 minutes or less, depending on if my stoma is in a leaky mood.

My biggest physical limitation now is overcoming the 3 months of being bed ridden due to the surgical complications of last year and how that took a toll on my muscles and endurance. Little by little I am coming back to being active, regaining my lost strength. It's been a slow but steady process of doing a little more each day, or at least trying to.

There are a few things that I have to be aware of if I am going out for awhile or away from home. I have to make sure I take enough supplies with me. I've gotten a good routine established with that and have felt comfortable with changing my bag while staying in a hotel room. It's not the same set-up I have at home, but it works well for me.

I was annoyed when I recently flew back to Pennsylvania, how the Seattle airport was super friendly and accommodating of my ostomy supplies, and then Philadelphia was totally by the rules and wasn't going to allow any liquids. I've since learned I need to have my doctor write that I medically require my stuff—which to me is such a violation of my civil rights and freedoms that I have to share and prove my medical condition with total strangers—and this could easily turn into a rant about all of that, so I'll just leave it at that.

Anyone else have questions? What do you want to know about sex and ostomies?