Had a great event at the Denver Crohns and Colitis Educational Symposium, last Saturday. We were so happy to meet and answer questions for current and potential ostomates. This was a unique forum for those with Crohns and Colitis to meet with members of the UOAA, and we appreciate the opportunity to attend!
It was such a great day last Saturday at the Take Steps for Crohns and Colitis in Ft Collins. Hosted by the Rocky Mountain Chapter of the Crohns and Colitis Foundation, there were over 120 walkers raising money for IBD research. We had a table promoting the Boulder County Ostomy Support Group, and were happy to share information for those with Crohns or Colitis considering an ostomy. Thanks, too, to Lois Fink, who helped at the table, sharing her story. There was great music, catered food from Texas Road House, and lots of positive energy for those suffering from Crohns and Colitis!
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.
I attended the UOAA National Conference last week and got some great new information. I’ll be sharing it for weeks. If you get the chance to go to the next one in 2019 in Philadelphia (they only occur every two years) I recommend you start planning now.
One of the recurring sessions is the Barrier Cooking Show hosted by Hollister. It’s a hands-on lab where you actually get to make a wafer! The chemist that taught the class had a couple of really good wafer tips that I hadn’t thought of:
–Before putting your wafer on, gently heat it first. He recommended simply placing the wafer under your armpit while prepping your skin. The ingredients in the wafers become much more sticky when warm, and you’ll find adhesion is much improved if you warm it first. He said you could briefly warm it with a hair dryer (not too long!), but don’t ever put it in the microwave. It will quickly explode!
–The other tip was caution if your bathroom tends to steam up a lot when you take a shower. If you have your supplies ready and waiting, the steam can seriously effect your wafer adhesion. He recommended actually keeping your wafer in another room, or an area where steam won’t compromise it.
I’m now paying attention to both of these and can say I see a definite improvement in immediate adhesion after heating my wafer under my armpit before putting it on. My next post will talk about the amazing Stoma Clinic hosted by the conference. Experienced WOCNs evaluating your stoma with advice and suggestions for a multiple of appliances. So much to learn!
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.
I plan to share lots of information!
I’ve settled into a nice routine where I change my wafer just twice a week – Wednesday morning, and either Saturday or Sunday morning – so I’m wearing my wafer three or fours days (the longest I’ve ever gone is five days when on vacation). I always change first thing in the morning when I have almost no output and can take my time. I suppose the detail I take in setting up my supplies is more than some people would take, but I like having it all organized so I don’t get flustered. Starting from the left in this photo:
Hollister New Image convex wafer and pouch
Hollister Cera-Plus thin ring (which I cut in half and flatten against the edge of the wafer before applying)
Zabsorb AF anti-fungal powder (I use this on the outer adhesive area of my wafer in the summer due to a wicked heat rash I developed last year)
Hollister Skin Barrier Wipe
Huggies Natural wipes
Smith and Nelson Remover Wipes
Karaya 5 powder (which is another version of Stomahesive powder)
Sensi-Care Removal Spray
Paper towels, torn into squares
Standard kitchen garbage bag lining the sink
Attiva Seal-N-Toss ostomy disposal bag, in the garbage bag in the sink
Whew! Now that I type that out I realize it’s a lot! And I didn’t have room to show my hair dryer on the left that I use to blow off the Karaya 5 powder and dry the barrier wipe when I’m crusting. This whole process, from pulling out of my supply cabinet, to new appliance application, to cleaning up, takes about 15-20 minutes. To be honest, this routine hasn’t changed much since right after I got home from surgery. I switch out wafers sometimes (I love to experiment with new products) and I now use half a ring since I developed a dip at 9:00 a few months ago. I still crust my stoma with one layer, even tho I think it’s often not so necessary, but it gives me a little piece of mind. For me, I’ve learned that rushing doesn’t help, and knowing all my supplies are in order makes sure I don’t forget anything. A small price to pay if it helps avoid leaks!
If, like me, you’ve suffered from Ulcerative Colitis (UC), you’ve tried every diet and supplement known to man.** UC is such an insidious disease and it logically makes sense that since it involves only your colon that your diet should make a difference. Research today is focusing on the microbiome, and I have participated in the American Gut Project through the University of San Diego. I received my report that broke down my personal microbiome and it is incredibly detailed. But there’s so much data being discovered that researchers don’t yet know how to interpret the data.
So it’s with a great deal of relief that once my colon was removed I was told I could eat whatever I wanted. In fact, that was the message the very day after my surgery! OK, while in the hospital they kept me on a low-residue diet while I was healing, but after that I was free to plunge ahead in the food aisles.
But wait. I’d done my homework and studied the Diet and Nutrition Guidelines from Ostomy.org, and I knew that it was important NOT to just eat anything and to introduce foods gradually. I kept on a low residue diet probably longer than I needed to (about six months) and then started very slowly with mushy vegetables and iceberg lettuce. Since then I’ve gotten comfortable with not-so-mushy, but cooked, veggies, more fruits (minus skins, for example, apples and peaches), and whole grain breads. I still avoid whole kernel corn, fresh veggies and greens, mushrooms, nuts and some whole beans. These items are a small price to pay to avoid any problems with a blockage.
Everyone is different, and when I’m asked about foods when I meet with patients in the hospital, I tell them it’s important to pay attention to your own body, but don’t push it. I always refer them to the Diet and Nutrition Guidelines because I think they are a good, reasonable resource.
*And now for my own personal perspective on food and UC. I know my observations are not shared by everyone, but if you truly have UC, I feel that food doesn’t really make a difference. Yes, there are lots of stories about diets (specifically the SCD diet) that have helped people get into “remission”, but I feel that remission has different meanings for different people. Does it mean you’re only on the toilet 6-7 times a day, instead of 20-30? Does it mean that you’re no longer bleeding, but you can live with the mucus? Does it mean you no longer have any pain, but maybe all your other symptoms? Does it mean you can get up at 6:00 in the morning, and no longer have to plan your day after 10:00 am? If your “diet” improves your symptoms enough for you to compromise your feelings about all your other symptoms, and you can live with them, then that’s great. But I don’t think diet alone will take away UC.
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.
The UOAA (United Ostomy Association of America) has a representative that works with the TSA in the US to specifically advocate for ostomates. Before traveling, it’s a good idea to check out their guidelines and recommendations so you know what to expect.
Like many ostomates, I’ve struggled with trying to find the right adhesive remover for me. I’ve found that as much as I like the Convatec wafers, they leave quite a bit of residue behind that needs extra care to remove. The Hollister Cera-plus wafers are much better for me, but I’ve had to adapt for those, too. What helps for me is when I’m taking a shower on wafer-changing days, I lift the edge of my wafer and literally wash underneath it. Usually the main portion of the wafer around my stoma will continue to stay stuck and not fall off. I use soap on the skin that’s exposed under the lifted outer-edge of the wafer and wash it off under the shower. I can often feel the adhesive come off and it feels so good to feel the clean skin after.
After my shower, I follow up with the Smith and Nelson Remover Wipes around my stoma, and the Sensi-Care Adhesive Releaser to release the wafer completely from my stoma (remember, I have a retracted stoma, so my convex wafer won’t often just pull off). I’ve tried several remover wipes, but just love the Smith and Nelson brand because they are quite wet, yet clean off easily with a damp cloth and dry with no residue. The Sensi-Care releaser is, in my opinion, the best on the market for spraying the main portion of your wafer — using it makes your wafer just fall off. I also use either one of these to clean my fingers after using my sticky barrier wipe.
There are many types of adhesive removers on the market, so another one may work better for you. Also, I believe men would have greater needs, due to the the challenge of extra hair growth around their stomas. A good place to get reviews is from Eric at veganostomy.ca. Eric has done an incredible job of reviewing a variety of products and I rely on his reviews before purchasing anything new.