Need help with managing my colostomy - work, pancaking, pain, and blockages

Hi, I have a right-sided sigmoid colostomy named Rosie. She is not very well behaved. I have had her for 6 months now. After a long battle with a mysterious nerve neuropathy, and several failed surgeries including an ileostomy (reversed after 10 months), 2 MACEs (baby stomas in my belly button for irrigation, failed due to infection), I ended up with Rosie. Unfortunately, Rosie and I are destined to be together forever as my surgeons do not want to put me through any further surgeries. So, I was wondering about a few things:

1. How do you manage your stoma and working? I struggle with 3 days per week at a school.

2. If any of you have had issues with 'pancaking' (my term for the output stacking on top of my stoma and not falling into the bag). Do any of you have this or am I just special?

3. Also, I have issues with pain from 'hubba bubbering' (where the stoma looks like it's swallowed a ping pong ball)?

4. What kinds of things do you eat? I have had 5 major blockages due to food since my colostomy surgery in November 2013. I have been hospitalized for each one which is very inconvenient. What do you do about blockages?

Thank you all in advance for your words of advice.

1. Some people bring a change of appliance with them at all times.

2. While you are special (as we all are), the pancaking is not. Some folks use the "Pam trick", some cooking spray in the bag to give the stool less friction and a means to move where it should (the bottom of the bag). There are also deodorizing lubricants as well.

3. This might be one for the doctor and/or surgeon.

4. You might have to keep a food journal so you know what works for you.

Hi Owlgirl14,

Nice to meet you.

Managing your stoma (imo) works best by managing what, when, and how much you eat. I tend to eat light in the morning before work, if I eat at all. I have never really been one to eat early, and I am at work sometimes as early as 6 a.m., so I usually have a banana or a snack about 9 a.m. Lunch is also a light meal because it doesn't do me well to eat heavy and then try to find the energy to work. I tend to want to relax after a normal meal.

Pancaking is a pain, Sinful Sot mentioned using the spray cooking oil, which I have not tried but have also heard helps. I have tried many tips and tricks but find if I drink enough water as opposed to any other liquid and keep some air in my pouch, things work best.

I'm not sure why your stoma looks like it has swallowed a ping pong ball, is your pouch cut correctly to fit and not too tight? You should surely talk to your doctor or nurse as soon as possible. If you can document the times this happens and what you ate or if it is before it is ready to empty itself, whatever you know has been happening around those times might be helpful to the doc. or nurse.

As far as what I eat, it is more of what not to eat and to chew extremely well before swallowing no matter how hungry you seem to be. Many folks have problems with certain foods, and you really would benefit from a food diary to help get an idea of what is not so good for you.

Here is a guide I found from the United Ostomy Association of Chicago, hope it helps

http://uoachicago.org/diet1.html

There are many guides online if you search the net.

Best of luck to you!

Hi Mrs A and Sinful Sot

Nice to meet you both. Thanks for your advice.

I am glad to hear that others have pancaking issues too... what a pain alright!! I definitely will try the cooking oil. I have some lubricating deodorant that I already use but it doesn't seem to help.

I was doing a food diary earlier in the piece to show my surgeon at my follow-up appointment but they've said I have 'pseudo obstructions" so it's not always the food I eat that causes the blockage.

Thank you both for your replies, it's nice to know that there are other people out there in Stoma Land that know what I am going through.

Thanks :-)

Hi Mrs. A,

I hope you don't mind me replying to you on this post. Does a banana, light lunch, and dinner give you what you need? Do you eat in between? I haven't had my stoma too long but am finding I am hungry ALL the time! Lol. And all I am doing is sitting pretty much. When I go back to work as a teacher after my chemo, I will not be having my evening meal until about 7 and lunch at about 1:30. Will I not be hungry?

Sorry for all the questions, I am just trying to find out as much as I can. I have not even introduced any fruit/veg or high-fiber foods back into my diet yet and already suffer from watery output and gas. I had my op almost 8 weeks ago now and it just doesn't seem to want to settle down. It is constantly doing something, albeit not much at times, but something. And at times it just goes absolutely crazy! Noisy, gassy, loads of output.

I guess I just want to know if this sounds normal. Struggling with all this stoma stuff! Lol

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

More tips and tricks can be found at

ostomyland.org

ostomy.org

Good luck!

Thank you for that :-)

Hello owlgirl14,

:) I use lubricating deodorant from Hollister Adapt. I stream a little bit and then I "rub" one side of the bag with the other one. I do get the top of the pouch (I am not quite sure if this is very recommended). But the main thing is to wear stretchable cloth. Dresses are good for me, pajamas could be the best but it is not approved at work ;P

I have breakfast 2 hours before leaving home. I take a cup of coffee and lactose-free milk. Also, a toast of bread (baguette) with olive oil (it helps me to avoid blockage, but sometimes produces the opposite effects), or toast with sugar-free jam.

At 11:00, I take an infusion (chamomile) and half an apple (it has to be yellow or mature).

I have my lunch at home and I use to blend boiled vegetables (carrots, a little bit of potato, and pumpkin work fine for me). A natural slice of pineapple as the first dish works also great for me. I do eat oil-free meat or fish and an infusion as dessert.

At 18:00, I have a coffee or infusion (with sugar).

And at 22:00, I have dinner (same as lunch).

I drink 2 liters of water daily and I don't eat bananas, nuts, or fiber during labor days because I can't control noise or waste.

I hope it helps.

Hi Owlgirl

You have really been through it - regarding the work thing. I tried but failed to go back because we couldn't get the facilities in place (in case of accidents). So I'm trying to eke out a living as a self-employed painter/artist, working from home. (It keeps me out of trouble). The pancaking is something I think we all suffer from, and I have many nights' sleep ruined by it. At the moment, I am using Coloplast Brava lubricating deodorant and that seems to help. It's good that you give your stoma a name, most people do. The funniest stoma name I've heard is Trevor (She named it after her boss).

Anyway, you keep smiling - you're very brave.

A....

Hello Owlgirl. It all seems strange but there are lots of us out there who've been through the adventure! My cancer surgery was over 20 years ago, so my colostomy has truly been a lifesaver. If you look at your situation similarly, you'll come to understand that these concerns are mere "bumps" in the highway.

I would take the advice regarding meals very seriously as you'll find that your output and stomal activity are a direct result. Additionally, I'd develop a relationship with your ET (Enterostomal Therapist or wound care nurse). They have more meaningful experience than your surgeon! I'd also make a point of researching the suppliers of ostomy appliances.

I have had numerous blockages which were largely a function of what I'd eaten. Generally, these blockages would clear on their own or I'd "prompt" them along with a hot shower or bath. When these wouldn't help, a shot of Milk of Magnesia and some patience really helps! Always remember that ostomates need two things to move food along: peristalsis* (normal movement of the intestines), and gravity. Before our surgeries, digestion just took place after we ate, but now there are some considerations which we all must make. Quick example: don't eat a massive meal right before bedtime.

This sort of surgery leaves you open to hernias. In fact, you should expect cramps and pain due to the related blockages. When you can't attribute your abdominal pain to anything in your meals, you should discuss the potential of a hernia with your medical team.

I cried like a baby at my daughter's wedding because, from time to time, I'm reminded that I almost missed out!! Once you get through the initial adventures, none of what you're going through now will stick in your mind.

* (from Wikipedia) "Peristalsis is often found in the contraction of smooth muscle tissue to propel food through... the human gastrointestinal tract."

I have had pancaking problems in the past. I watch my diet, you will discover what works for you. If I eat bread and pasta, any combo of carbs, potatoes and biscuits, all of these will be more likely to pancake. I can have a glass of wine, if you don't drink try a nice serving of grapes, and drink water, water, water. String green beans work really well for me, I don't know why. Good luck and try to thank God we're alive. I am feeling very lucky that this kind of surgery is available. I will never have the reversal, just my choice.

Hi Scord,

Nice to meet you. Being hungry all the time can be a problem when you're at work. For me, having something light in the morning is all I can stand as I never really feel hungry for the first few hours of my day. Sometimes I just have an Ensure drink or Carnation Instant Breakfast. If I manage to go food shopping, I even make my own smoothie-type breakfast drink. Yes, some days are better than others and I snack on a small bag of pretzels or rice cake poppers (they are small-sized rice cakes), sometimes peanut butter crackers. It just depends on what I have. I have gotten quite used to eating more small meals than I did before I got my stoma. When I am home, I eat more in between meals than meals. I think if you make choices that are good for your body's needs, you should be fine. Since you're pretty much sitting around healing now, I tend to think when you become more active with work, you will have more satisfying meals and work will keep your mind off of food and on your work.

Best of luck to you, and let me know how you make out.