Our next meeting will be on October 5th at 1:00 pm. Our guest speaker will be Lois Fink, author of the book “Courage Takes Guts“. Ms. Fink wrote “Courage Takes Guts” as a way to share her battle with Crohn’s disease, and illustrate how full and active her life is as a result of ostomy surgery. This humorous book is for patients, family members, friends, caregivers, as well as gastroenterologists, colorectal surgeons, and certified wound ostomy continence nurses. Her book shares the life lessons she learned after losing her colon, and how Crohn’s disease and ostomy surgery offered her opportunities for personal growth when she chose to change how she viewed her situation.
We look forward to welcoming Ms. Fink and will have some free copies of her book available.
Are you going to this year’s UOAA conference? The United Ostomy Association of America has a national conference every two years, and this year it takes place in Irvine, California. I’m going, and here are some of the topics I’m most interested in:
–Fecal Microbiota Transplant (FMT) – As a patient with Ulcerative Colitis I’m quite interested in research for FMT for those with Crohns and UC.
–Chemo and Radiation effects on an ostomy – Because I was part of the UC community for so long, it was eye-opening to see that most ostomies are due to other factors.
–Gynecological Issues for Women – I’m not sure I’ll have time for this session, but I’d like to hear a discussion about the unspoken complications and challenges that women face after ostomy surgery.
I assist the WOCN team at our local hospital, and I’m active with our local ostomy support group. I’ll be attending the UOAA Affiliated Support Group sessions to learn how to grow our group and understand how we can best use the services of the UOAA. Also, I’ve learned that I can actually get certified for doing what I’m doing, through the UOAA Visitor Program. I’m quite excited about this and can’t wait to take the test!
The conference has the usual exhibitors (I’m looking for lots of samples and new product info), and there is a daily WOCN clinic. At the Clinic you can schedule time with a WOCN nurse to evaluate your stoma and give feedback. I’m definitely doing this, as my stoma has retracted considerably since my surgery and I fear more surgery is in my future.
Before my surgery I’d read a bit about phantom rectal pain. It’s just like phantom limb pain, where your brain thinks there’s a limb (or colon) there, but there’s nothing really there.
You can find multiple articles in PubMed/NIH studies that explore this phenomenon. It’s 18 months since my surgery and I still experience this almost every day, usually after I brush my teeth in the morning. It’s a very stubborn habit! For me, with an ileostomy, it’s an easy thing to resolve – I just sit on the toilet and pee. I can actually fool my mind into thinking it’s actually doing something and the feeling goes away. If you have a colostomy, I see from the NIH studies that you can have some odd bowel sensations if you irrigate your stoma. It appears that all these feeling will resolve with time, but it hasn’t yet happened with me.
Another strange affect for me is the sensation of actually having a bowel movement. That occasionally happens to me at night when I’m dreaming. So weird!! But even in my dreams I remember there’s no colon there and I start laughing about it. So far I can honestly say I don’t mind NOT pooping or farting!
This past month I’ve been on an extended trip overseas, and I wanted to share my experiences and some travel tips.
I knew from fellow ostomy travelers to take plenty of supplies. I took twice what I thought I would need. I didn’t really need that much, but was glad to have them, because I did have one unexpected wafer change and I was glad not to worry about using any needed supplies. I always carry a stand-up mirror with me, and I was glad to have it on this trip. We had a variety of hotel rooms and not all had mirrors that allowed me to view my stoma while changing. Plus, the mirror gives me a more close-up view, so I don’t miss and cover half my stoma! (I’ve done that before). I have a separate carry-on bag that has all my supplies, plus a two-change Starter Kit bag in my backpack, and one emergency change in my purse. I try to cover all the bases.
TSA – I didn’t really know what to expect. One member of our support group had been taken aside for almost a half hour recently while they checked out his urostomy appliance. I know the rules in the USA are that they can not ask you to undress, but I wasn’t sure about Europe. I was pulled aside at Heathrow. The security agent, a woman, felt my appliance on the outside, and was rather thorough about it (but not obtrusive). She did start to raise my shirt and asked if my appliance was located on the outside, and I told her it was attached to my body. She stopped raising my shirt and asked me to step aside, where they scanned my shirt where the appliance is and my hands with the explosive wand, and fed that into the scanning machine. I then had to take off my shoes and was re-scanned in one of the x-ray machines where you raise your hands above your head. While I was doing that, they scanned and opened all my carry-on. They were very polite and the whole process took about 15 minutes. We had plenty of time and, all things considered, it was a better experience than could have been. I did not use my TSA Blue Card because I figured it would have no effect overseas.
You do have an emergency kit, right? And you have it with you at all times….right??
This is my emergency kit. It has two extra pouches (one one-piece, and an extra pouch for a two-piece), remover wipes, barrier wipe, extra disposal bags, a mirror, a pack of cleansing wipes, one pack of Shout cleaner, and an extra pair of underwear. I keep it all in the small bag that came in the Secure Start starter kit I received from Hollister shortly after my surgery. In fact, I received a small emergency bag in all of the starter kits I received from each major manufacturer, but I liked this one the best. I use one of the others as my go-to bag when I travel and need extra supplies on hand in my carry-on luggage.
I carry this with me always. It folds up fairly compact, and fits in my handbag easily. I try to remember to swap out the pouches on a regular basis, but I usually forget. That’s not a good thing (so don’t you forget!) because if you leave your pouches in a hot car the adhesion can diminish. I’m keeping my fingers crossed that whatever real emergency might crop up, my bag will be a short-gap measure just until I can get to my real supplies.
I’ve actually had to use it twice, both on the same vacation, and on the trip home. The first time I was emptying my pouch in the airport bathroom and I got output all over my underwear. Thank goodness it wasn’t on my clothes! But I was able to grab my emergency underwear, change out in a very small bathroom stall, throw away the old underway, and move along. Then, in the airplane later, I realized that there was no way I could fit me, and empty my pouch, on the airplane toilet. So I grabbed one of my disposal bags and emptied my pouch into that. I’ve used this trick a couple of times and recommend it when you realize that you have a very limited space, or an extremely small toilet that won’t accommodate both you and your pouch. Fortunately, I’ve not had to use my emergency bag in a “real” emergency, with a total blowout. But I hope I’m prepared, just in case!
At our monthly ostomy support group meeting yesterday the question was raised about marshmallows. There are anecdotal sayings that eating marshmallows will slow down your output – useful if you need to change your appliance when least expected, or when you’re visiting the doctor or ostomy nurse. I can say for sure, YES! Eating marshmallow can be quite helpful!
When visiting my ostomy nurse after my surgery, I would take 4-5 marshmallows (the large ones) with me to the appointment. I would eat them while in the waiting room, so I usually had about ten minutes to wait while they digested. Then there’s the added time talking to the nurse about what my issues were, and the time to remove my current wafer. By then, my output had sometimes completely stopped and, at least, slowed to the point that we had time to evaluate what my problems were and get a new appliance on with minimal disruption. When your stoma is over-active, it’s problematic getting that new wafer on, especially if your stoma is recessed, like mine. Usually, there was about a 20 minute window when my output was slower or stopped.
In general, it’s always good to schedule these appointments at least two hours after eating, so your output is a little slower anyway. Your stoma will be much more active and unpredictable in the weeks right after surgery, so the marshmallow trick may make things a little easier. I also used them in the mornings when I had a lot of skin breakdown and had to change my wafer daily until my skin healed. I’ve heard marshmallows don’t work for everyone, but they’re certainly worth a try, and taste pretty good, too!
If you’ve suffered from ulcerative colitis or Crohns, or experienced rounds of chemo therapy and radiation, you know what fatigue is. It’s SO much more than just being tired. It’s that feeling you get when your body says “You’re going down NOW!”. And the best thing to do is just stop what you’re doing, because if you don’t, you may pay the price in secondary infections or an inability to function later when it’s important. The best advice I got from my doctor was to just give in to the fatigue. At first it was counter-intuitive – of course, I can keep going! What’s a little tiredness? But that only leads to more episodes of fatigue so extreme you really can’t function at all. So when that feeling hits, listen to your body and take the hours (often it’s hours) to recover the best you can. Sometimes the sofa was my best friend for the day. The good news? You can recover after your therapy or surgery. It takes quite a while, and there can be setbacks, but the best feeling is actually feeling just tired, without the debilitating fatigue.
Joanna Burgess gave a CRCWebinar “All Things Ostomy” this past week (February, 2017). I thought there was a lot of good information here and wanted to share the link for the webinar and highlight the Top Five Issues Patients Face at Home.
Presented through Fight Colorectal Cancer, Joanna is a WOCN, (Wound, Ostomy, Continence) nurse, and she has a unique perspective from living with her own ostomy. The Webinar includes practical tips for preparing for surgery, diet and nutrition, and more.
Of the Top Five Issues noted, my personal experience is much more positive. I’ve had some peristomal skin breakdown, and it can be annoying and difficult to control. But with patience and support from a WOCN, a solution can almost always be found to get it under control. Once you get that handled, the incidence of pouch leakage often greatly improves. I have had changes in my body shape that have caught me off-guard and led to unexpected leakage, but once I understood what was causing the leak I was able to get a handle on it in just a few pouch changes.
I have never had a problem with odor, and I think this is a fear based on pouches in the past. Newer pouches handle odor quite well.
You will be limited in your activities, especially right after surgery, so I recommend finding a good physical therapist to help you regain strength and mobility. Once you recover you should be good to go, and not limited in doing the things you enjoy.
Depression and anxiety are normal. I remember one particular day of sadness when I was in a busy shopping area and, while looking at all the people around me, realized that they all had colons, and I didn’t. I felt a profound sense of loss at that moment, and that lasted the whole day. And I confess to a constant, underlying sense of anxiety when I leave home. I ALWAYS have my emergency kit with me, and actually had to use it in an airport restroom. But it doesn’t stop me. Knowing that I’m prepared makes me more confident. And understanding the alternative to my ostomy, frankly, makes me happy to have it.
So, you’ve had your house for years. You raised your children there and, so far, you can’t see any reason to make any changes. But you now have an ostomy, and your house still has those small, low-to-the-floor toilets.
It’s time. You need to replace those toilets.
Yes, the new toilets have water restrictions, but they’re so much more efficient, and most can handle all the output you can put in them. And you can often get them on sale from Home Depot or Lowe’s. Look for the terms “elongated” and “comfort height”. My favorites are from Kohler or Toto (I have a great video of a Toto toilet I’ll post later). I’m not as fond as the ones from American Standard, but they may work fine for you.
What I look for is a toilet bowl with less slope. That way you can place your toilet paper against the bowl without it falling down before you empty your pouch. The American Standard toilets I’ve used all slope quite a bit, and you have to be careful placing the toilet paper, especially if you’re someplace public. The Toto toilets have some models that are virtually flat. They’re expensive, but work really well. If you do have an American Standard toilet, remember to hold the handle down a couple extra seconds to allow more water to flood in. Otherwise, you may find yourself having to flush twice.
And have you noticed how much easier it is to empty your pouch in some public restrooms? That’s probably because most of them have open-ended toilet seats. That gives you a couple extra inches of room for your pouch. You can get them for your home toilet, too. They’re not expensive and can make your life so much easier.