UOAA National Conference – Aug 22-26

UOAA National Conference – Aug 22-26

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!

 

 

 

My Setup for Changing My Wafer

My Setup for Changing My Wafer

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
Scissors
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
Mirror
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!

Awww, Go Ahead….You Can Eat Whatever You Want

Awww, Go Ahead….You Can Eat Whatever You Want

Well, Maybe……

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.

Phantom Rectal Pain – Yes! It’s a real thing

Phantom Rectal Pain – Yes! It’s a real thing

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!

TSA and Travel

TSA and Travel

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.

That Darn Adhesive!

That Darn Adhesive!

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.

Managing a retracted stoma

Managing a retracted stoma

I have an ileostomy with a retracted stoma. It retracted within a couple of weeks after my surgery. Although I have some suspicions about why this occurred, I don’t really know for sure. I understand that sometimes it just happens.  Mine is not as bad as it could be — my stoma is right at skin level, so I’m able to wear a convex wafer with virtually no problems. However, I’ve gained 10 lbs since surgery and that has caused a dip on one side, so I now usually wear a ring to help fill that gap (I sometimes will use paste, but I find it very messy).

Because of the wafer convexity, and now the additional pressure applied by the ring, I pay close attention to the skin directly around my stoma. Being older, my skin is dryer and less flexible, and I want to make sure I avoid any pressure sores.  I usually wear a Hollister Cera-plus convex wafer, but every couple of months I’ll switch to a Convatec Natura convex wafer. The convexity is different between them, and it gives my skin a chance to recover a little bit. I like both of them, and they both work really well, but I’ve developed a sensitivity to the Convatec adhesive and can only wear them for a max of two changes before my skin just erupts and starts itching like crazy. I think this is a problem unique to me, so if you try this approach you will probably not have any problems.

Having a retracted stoma can be problematic, but with the right accessories it can be managed successfully.  Of course, losing the 10 lbs might help to solve some of this problem, and I’m working on that!

Toilet Tips

Toilet Tips

Back to my favorite subject — toilets! I’m always thinking of things to help with being in the toilet. Our pouches have enough challenges and toilets shouldn’t make things more complicated.  Here are some of my tips that might help:
  • Wet wipes — I try to keep these within reach when emptying my pouch. I like the Cottenelle flushable wipes.  They recommend only flushing one at a time, but they sure are handy when you need to clean the end of your pouch, especially after liquid output that might get messy.
  • American Standard toilets — Did you know that you should hold the lever down just a little longer on newer American Standard toilets? I’ve found the same is true with my new Kohler toilet. If you live in a State that limits the toilet tank, they sometimes simply arrange for the flush to be truncated, but there’s actually more water in the tank that you can utilize by holding the lever a second or two longer.
  • Remember to always line the toilet where you’re emptying your pouch. Have the output hit that instead of the porcelain. It makes it easier to flush. If you get output on the toilet itself, and it dries, it becomes like concrete and it’s really hard to clean.
  • I thought I used a lot of toilet paper when I had UC, but I still use up to a roll a day, depending on how many times I need to empty my pouch. I think this is probably more true for women that use more toilet paper anyway. Also, I use some rolled toilet paper to clean the end of my pouch when emptying. I just accept it and buy in bulk.
  • You know all those disposal bags that come in your pouch orders?  They’re great for emptying your pouch in small spaces or toilets that are too small to sit on. They’ve been really convenient for me in airplane toilets.
  • And finally — to extend the space on your toilet, buy an open-front toilet seat, like they have in restaurants and shops.. You can gain several inches of room!
**The photo with this post is of a Toto toilet. Some Toto’s are very expensive, but they’re my favorite. Many have a rather flat surface in the bowl, and an amazing flush.
Summer Skin problems

Summer Skin problems

Last summer I developed a horrible rash under the adhesive of my wafer. My first thought was yeast and I called my primary care doc. She prescribed three days of Diflucan, which did absolutely nothing.  I then called my dermatologist, who prescribed another four days of Diflucan. Still, no difference. By reading other’s experience with this, I now realize that yeast and adhesive reactions are a troubling and persistent problem for many ostomates. Here is my journey and solutions:

First started with Desonex powder. I would apply it all over the rash area, gently pat it in, and then gently use a barrier wipe on it before applying my wafer. I did this for several weeks with no real effect.

Then I tried a product called Zeabsorb AF, also over the counter.  This is a clay-based anti-fungal, and I followed the same techniques as with the Desonex. I also changed from Convatec to Hollister wafers because the Hollister wafers aren’t as large, and I could then rub some of the Zeabsorb AF around the edges of the wafer in-between changes.  This did seem to make a small difference.

My next experiment was with Lotrimin.  This is an OTC anti-fungal cream. I was hesitant to use this under my wafer, so I continued to use the Zeabsorb and would rub a thin film of the Lotrimin around the outside edge a couple of times a day. This worked much better, but didn’t completely clear it up. And for a short period of time I started developing leaks, and switched back to the Convatec wafers to better heal my skin. The rash then really flared up, so I knew then that this was also a reaction to the Convatec wafer adhesive.

I read an article in the Phoenix magazine about using Monostat cream. This is a cream that lots of women are familiar with for vaginal yeast infections, but I must admit I’d not thought to use it on my skin. It can be purchased OTC in a 4% concentration, which is almost prescription strength (I got mine at Walgreens). I applied a VERY thin film under my wafer on clean, dry skin and dried it with a hair dryer, then applied it around the edges in-between wafer changes. And it worked really well! Within just a couple of days I could see a big difference. There’s almost no trace of that rash now and the itching is gone.

The Monostat cream isn’t cheap. I bought generic and it was $20. I was unable to get the cream alone, so had to buy the package with the applicators, as well.  But I just threw them away and kept the cream tube.

In conclusion, I now believe that yes, I probably had a small yeast infection, but it was made worse by my reaction to the Convatec adhesive (which is a shame, because I think the Convatec products are really great).

It’s now April, almost 9 months later, and only now is my skin almost completely healed. I use almost always Hollister wafers now, but switch to Convatec for 2-3 changes every couple of months. Because my stoma is retracted, and I use a convex wafer, I do this to change the pressure around my stoma and give my skin a chance to recover. But I can only use the Convatec wafers a short time before my skin reacts to them. My current regimen is using a VERY thin film of Cortisone-10 on clean, dry skin, dry with a hair dryer, then pat the Zabsorb AF on top of that and seal gently with a barrier wipe. The Corisone-10 does a good job of keeping the itching at bay, but the secret is to keep the film exceptionally thin and make sure it’s all completely dry before applying your wafer.

This is a long post, but I wanted to let you know my attempts at this vexing problem. Hope these suggestions help you with any Summer yeast or adhesive reaction issues.

Emergency Kits

Emergency Kits

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!