In approaching the two-year anniversary of my ostomy surgery, I was looking back at an email I wrote to Doug from the hospital during my final severe UC flare. A few days before writing it, I had received my very first infusion of Remicade. It had worked wonders to get my symptoms under control, but I did not want to take such a potent drug for the rest of my life if it could be avoided. I was strongly leaning towards pursuing surgery once I got out of the hospital and wasn’t so sick and weak (a decision that became much clearer when side effects of the drug became more than I could bear). Even though I was quite confident that I wanted surgery, I was still scared of getting an ostomy due to the horror stories I read on the internet–especially the ones that revolved around leaks. I had just read a worrisome tale on the web when I sent this message:
October 2, 2010
Doug,
This all sounds so complicated and overwhelming. I DON’T want to be infused with drugs the rest of my life but this sounds so hard too. What if I can’t find a way to go climbing or backpacking without creating a leaky poopy mess? Are you confident we will be able to figure this all out together without getting fed up? Maybe it feels different when someone faces surgery in an absolute emergency, but I am choosing this aren’t I? Need some reassurance.
-Heidi
Despite the fears, I knew in my heart that surgery was the route I wanted to take to treat my ulcerative colitis. I met with my surgeon and was then scheduled to meet with my “wound, osotmy and continence nurse” (WOCN). I had lots of questions for her, including several about leaks. She assured me that once I found the products that worked for me, leaks should not be an issue. I liked that answer, but I wasn’t sure I believed it. From all the things I read, leaks just seemed like a given with an ostomy. After my surgery, I stocked my car with spare pants, put waterproof pads on the bed when I slept, and bought a collapsible wash basin to wash potentially poopy clothes on future backpacking trips.
It didn’t take long to experience my first leak. Shortly after I got home from the hospital, wound drainage got under my wafer while I was sleeping and broke down the adhesive. Though not a huge disaster, a little bit of stool did escape. I had been using a strip paste right around the opening, but it did not adhere to my skin well. I decided to set up an appointment with my WOCN to see if she could troubleshoot my problem. After hearing about what happened, she left the room and came back with something that looked like a flat donut made out of Silly Putty. It was called a barrier ring. She showed me how to put it on, gave me a few extras, and told me how to order more. I left the office hoping for the best.
So how long was it until the next leak? It has been almost two years since that appointment and I have yet to get another one. My nurse was absolutely right when she said finding the right products is crucial. For me, a barrier ring was all I needed to become confident that output would not seep out from under my wafer. Whenever people mention leaks, the first thing I ask them is if they have tried a barrier ring.
Barrier rings come in many different brands. The first one I tried was an Adapt Ring by Hollister. I used these for four months and liked them a lot. However, I later tried an Eakin Cohesive Seal by Convatec and found that they were more resistant to erosion from my output and stuck to my skin very well–almost melting onto it. Some people don’t like this because the residue is hard to remove. However, that stickiness is exactly what makes them work so well for me; nothing gets beyond the Eakin. I also tried a ring by Coloplast, but so far, the Eakin Cohesive Seals are my personal favorite. Everyone is different, so it pays to try every brand to see which is the best fit for you.
The other thing I love about barrier rings is how well they protect my skin. Wilbur, my stoma, is an active guy. He wiggles, dances and expands and contracts a lot. To leave room my stoma’s gymnastic routines, I cannot cut my wafer too close to it and need to leave about 1/8 inch of my skin exposed. A barrier ring swells up to fill in this space. At first I was a little shocked by how much the barrier ring turtlenecked around my stoma when it was exposed to moisture, but I soon realized that this is exactly what they are designed to do in order to protect the parastomal skin.
The following photos show my favorite way of attaching a barrier ring. This method minimizes the chances of getting the ring wet which allows it to stick to the skin very well. Along with using a barrier ring, I change my appliance every 3-4 days. Beyond that time frame, my Eakin Cohesive Seals erode and leave my skin exposed.
The barrier ring I use: the Eakin Cohesive Seal.
First, I stretch the hole in the ring to match the size of my stoma. Then I tear one side. (Yes, it appears a manicure might be in order… rock climbing is hard on the fingertips).
After drying off my skin very well, I hook the ring around my stoma.
I then press the torn edge back together.
Finally, I place the wafer over the barrier ring. You can see the 1/8″ space around my stoma and how the ring fills it in. Within an hour, moisture will cause the ring to swell and turtlneck up the side of the stoma about 1/4″. This keeps output from seeping under my wafer while also protecting my parastomal skin. (See the Skin Sleuthing post to read about the taping method pictured).
Nowadays, the spare pants sit unused in the car (well except for the one time they came to the rescue when I dropped my tail and spilled output all over my trousers), the package of waterproof pads is gathering dust in the closet, and I have not had to do laundry on any backpacking trip. It doesn’t matter whether I am climbing in 95-degree temperatures, snowboarding in the frigid cold or swimming at the pool. I always feel confident that my appliance will not leak during any of my activities when I use a barrier ring. Even in the rare instances when my wafer has peeled up, my barrier ring has always held tight and maintained the seal.
So if you are having leaks and haven’t tried a barrier ring, I highly recommend getting a sample and giving it a go. If the ring doesn’t prevent your leaks, meet with a WOCN and see if they have any other recommendations. Talk with other people with ostomies on the internet or at local ostomy support groups and find out what they suggest. With the right products, leaks with an ostomy shouldn’t be a given; they should be the exception.
You’re convincing me I should give these a try. I have an ileostomy and while I don’t generally have problems there’s always room for improvement. I had quite alot of leakage issues when I first started out. Problem 1 was that my stoma was gradually getting smaller as I healed but I was still cutting my wafer the same size. Problem 2 was that I was using a couple of products my nurse recommended, a cleaning solution and some sort of adhesive. I can’t remember exactly, it’s been quite a while. I knew something wasn’t right so, being a minimalist at heart, I started experimenting with eliminating products as many products as possible from my regimen. Sure enough, things got much better. The one thing I found that I couldn’t do without was the stomahesive paste and I’ve been using it ever since with good results. Now I think I’ll give the barriers a try. I use convatec natura moldable wafers – 2 piece system, they’ve worked well for me.
Thanks again for your informative post
You said you spent some time in Yosemite – I live in Mammoth Lakes – not too far away on the east side. Yosemite is definitely a special place
Good luck on you’re Mt Ranier trip
Hi Lew,
Thanks for the comment. I worked as a park naturalist in Yosemite for four years (until 2004) and lived right in the Valley. It was a once in a lifetime opportunity and I still miss it sometimes. Such beautiful country! Mammoth is a gorgeous place to live too. I have visited the east side a lot and did a trans-Sierra ski trip once starting on the east side and ending up at my doorstep in Yosemite Valley. Absolutely amazing!
I have to say though that I am glad that my ulcerative colitis waited to get bad until I moved to a larger metropolitan area. Driving to Fresno for medical care was always a major undertaking. Nice to be only 20 minutes away from my doctors and surgeon. Do you find it challenging living in a smaller town?
I would definitely recommend giving the Eakins a try. I find they erode less quickly than paste, though I seem to have crazy corrosive output. Sometimes I swear it is going to eat right through my Durahesive wafer!
My stoma liked to shape-shift in the first few months too. I thought I would never get a pattern cut that I could use more than once. Just when I thought I got it right, my stoma would shrink again. Finally, around 4 months post-op, it finally settled into its current size. I wish I could talk my stoma and parastomal skin into liking a minimalist lifestyle. Mine is the opposite and likes things to be extravagant with the perfect layer of powder, barrier film, ring etc. I guess we have to do whatever it takes to keep our ileostomies happy:)
Thanks again for the note!
-Heidi
Heidi, it has been a really inspiring blog from you. I myself have Permanent ileostomy from last 3 years, and i too precisely opted for this option so as to live a more free life and not worry too much about running to the bathroom. I had been suffering from UC since 2003 and ended up with ileostomy in 2009. My doctor was pushing me for trying Remicade, but i guess i was too fed up in these many years of taking steroids for UC that i wanted a permanent solution to this and hence I opted for the surgery. However I have one question for you, as you would have also been on steroids (prednisolone) or some other steroid for so many years for UC, how were you able to taper and stop taking steroid after the surgery and how long did it take to stop those medicines. I have been trying to get of steroids after my surgery, but since last 3 years i am still unable to stop them completely. It seems by adrenal gland are still not able to function to it original liking and hence i am unable to get off the steroids. Any advice in this regards would definitely be helpful and once again thanks for sharing all your valuable experiences.
-Jai
Hi Jai,
Thanks for the great question regarding prednisone. Though I had UC for many years, I was never put on prednisone for long chunks of time. It took me seven years with symptoms to finally get my official UC diagnosis, so during that time I was not on any medications at all. When I was officially diagnosed in 2006, I was put on Asacol and Rowasa (mesalamine) enemas. They worked fairly well for a whole year before my UC finally got bad enough for prednisone. I had a bad flare at that time that sent me to the hospital where I was prescribed my first-ever taper. Though I had very few true remissions from my UC, it was only during my worst flares when I had a lot of bleeding, bad urgency and multiple BMs that my doctor actually prescribed prednisone. Most of the time I was just on the Asacol and Rowasa. Towards the end of my UC journey, prednisone pretty much stopped working for me anyway. My total prednisone intake during my entire UC history was as follows:
-July 2007: a 40mg taper
-August 2008: a 40mg taper
-April 2009: a 20mg taper
-August 2010: started a 40mg taper and ended up being on varying doses of oral and IV steroids for the next 3.5 months, with the highest dose being 80mg.
My doctors were very cautious about prescribing prednisone due to its effects on bones in the long term. Even on the doses above, I still ended up with osteopenia which I am trying to reverse through supplements and exercise.
My final taper of prednisone occurred at the same time I had surgery in 2010. I had been on 80 mg during my final flare in the hospital. My doctors slowly started to taper me down in preparation for surgery. It was a bit tenuous because they wanted me to be on the lowest dose possible for surgery, yet they didn’t want my UC to flare up again right before the operation. I ended up getting down to around 30 mg by the time of my operation. I continued to taper after surgery. My taper from 80 mg to 0 mg took roughly 3.5 months total. I believe I hit 0 mg roughly 6-7 weeks after the operation. I do remember feeling tired and somewhat nauseated when I got down to 5 mg and then through 0 mg, but eventually my body perked up and that passed. I never had a problem with my adrenal gland not waking back up.
Sorry I can’t offer much advice. It sounds like you may have been on prednisone for a much longer, more continuous time, so I am not sure how that would effect your ability to finally get off of it. I can’t imagine how difficult it must be to be all through with surgery and to still be having to take prednisone. So sorry to hear you are going through this. I hope you can find a solution soon!
Take Care,
Heidi
Hi Heidi,
Thanks for your time and attention in replying to my questions.
Yes, I have been on steroids for about 9 years now and I am trying to taper them off slowly.
One more question I had, and I hope I am not bothering you too much with my questions
, as I wanted to know if you experienced food obstruction post surgery. Since my surgery, in last 3 years, I have had 4-5 times food obstruction and had to be hospitalized to clear it up. Is this expected after such a surgery? and would this continue to happen? or is it just in the initial years after the surgery?
Also overall I feel quite weak and less on energy even though it has been 3 years since my surgery, Also I experience a lot of muscular pain. I am not sure is it because of the tapering of the steroids or due to the surgery.
Thanks again for being so kind and helping me with my queries
Thanks,
Jai
Hi Jai,
I am fortunate in that I have not experienced any food obstructions and have been able to eat most foods with no issues. It does seem like many people do deal with blockages or partial obstructions from time to time though. I have heard that blockages can sometimes be caused by scar tissue kinking or compressing the remaining intestines, though I imagine there are other causes too. Some people also seem to be more prone to them in general– though I am not exactly sure why. I also don’t know if blockages most often happen early on or years down the road. That would be a really good question for a surgeon. I have certainly heard of people getting them for the first time many years after surgery. Sorry I can’t be of more help with these questions. I have wondered about many of the same things.
My energy has improved since surgery as my ulcerative colitis made me very fatigued. I definitely had some minor muscle and joint pain when I was on prednisone. However it would be a good idea to ask your doctor about this as there could be so many different causes. Sometimes having an ileostomy can affect your ability to absorb vitamin B12. Have you had your levels of that checked out? I would recommend getting a full blood work-up at the lab to see if you are anemic or low in any other vitamins.
Most of my sore muscles post-surgery have been due to muscle imbalances left behind from being so inactive when I was sick and then recovering from surgery. I have been working with a physical therapist to get everything strong and in proper alignment again and it has helped tremendously. I am still working through some shoulder issues though.
Hope this helps and please feel free to ask more questions. I am happy to help if possible.
-Heidi
Hi Heidi,
I’ve been keeping up with your blog since I started preparing for my ostomy surgery six months ago. It’s been a fantastic resource pre and post surgery. You’ve been an incredible example of someone maintaining an active life with an ostomy. I’ve been getting back into my wellness routines in the last few months, running daily and such but nothing that builds up much of a sweat, which I know can create a problem with wafers. I’m looking into taking fencing classes and with the suit and all there’s a great deal of sweat to deal with, so I was wondering what your experience has been with perspiration and wafer maintenance. Thus far I’ve only had two leak issues and they were both in the first two months post-op – and I live for eakin rings, I can’t imagine what it was like without them.
Thanks so much for creating this blog and being a fantastic voice
Thanks for the great question. I am so happy to hear that you are planning to take up a new sport with your ostomy!
Much to my surprise, perspiration has not caused any issues with my wafers sticking. I fly fish in waders on hot days and trail run in warm temperatures on a regular basis. I even did a 12-hour climb in 95 degree temperatures this summer with no wafer problems. I wear Convatec Surfit Natura Durahesive cut-to-fit wafers and they never peel up no matter how much I sweat. I have to use Niltac adhesive remover spray to even get them off. I will say that I usually change my wafer every 3-4 days, so maybe if I went for longer wear times they would eventually be affected by sweat. I change my wafer this frequently because my output erodes my Eakin if I try to go longer than that.
One thing I do notice is that sometimes my Eakin will erode a day early if I have worked out in the heat. In these cases I will have to change my wafer or face some skin irritation. I usually snap my pouch off of the wafer and take a look at my stoma and Eakin after a workout in the heat. If the Eakin has melted away, I will see some skin exposed right around my stoma. This usually only happens if it is really hot out. For instance, I had to change a day early after the 12-hour climb I mentioned above.
Really, my biggest issue with sweating is dehydration. I have to make sure I drink enough to replace the lost fluids. I end up carrying a lot of water with me while exercising.
Hope this helps and best wishes with the fencing! I find the best thing is to not be fearful about the “what ifs” regarding leaks and to just give the activity a try. If something doesn’t work with your ostomy system and a particular sport, just keep adapting and troubleshooting until you solve the problem. Live life to the fullest and don’t let your ostomy stop you from jumping in and trying all the activities you wish to do.
Cheers,
Heidi
Wow Heidi!
All I can say is, THANK YOU!
I am eight weeks post surgery and am going through another “adjustment” period with my ostomy. I was just beginning to gain some confidence in getting back to my life when all of a sudden, what I was doing does not seem to work anymore. It now makes sense to me that as things heal I need to make some adjustments. I was so very discouraged today but your posts have given me much hope that I will work through this. I am deali g with chemo therapy as well right now, (stage III rectal cancer), and really want to get the ostomy figured out.
I look forward to the day when I can inspire other people as you have inspired me.
All my best.
Maureen
Hi Maureen,
Thank you so much for the nice words. It means a lot to me to know the site has helped you. I am sorry to hear you are going through this. I can’t imagine how difficult it must be to deal with chemo and an ostomy. Hang in there! Keep experimenting with different products. A lot of ostomates feel “less is more” when managing their ostomies. They are able to simply cut a hole in their wafer and stick it right on their skin with nothing else and have no problems. Then there are those of us who have to go with a “more is better” plan and build up layers of products underneath our wafer to prevent skin breakdown. The only right way to do things is the way that works for you. I hope to write a couple more skin care posts in the upcoming months to show some of the other things I do. I have to be very meticulous with my skin care routine or I immediately run into problems. I also have to change more frequently than some. I change my wafer every Monday and Friday. 3-4 days is about the maximum time I can go before my output totally starts to breakdown the materials in my system and cause skin issues. Also, it still takes me over 30 minutes to change my appliance because all the careful steps I have to do. I hear a lot of people say they can change in 5 minutes. That sure would be nice, but I have realized it does not work for me. I need to do the more time-consuming steps in order to maintain healthy skin.
I am not sure if you have trouble with output coming out of your stoma while you are changing, but that is one problem I have. It can make me want to rush through changes and not do a good job. One thing that helps immensely for me is eating 4-6 marshmallows about 20 minutes before a change. I don’t know exactly why this slows down output, but it is something one of my stoma nurses recommended. With the output slowed down a bit, I can relax and really get my various skin care steps finished correctly while putting on a new appliance.
And yes, things change a lot during the healing process. My stoma kept changing shape at first and I had to make a new pattern to cut the hole in my wafer every time I changed. And my stoma is not a perfect round circle. It is a bit more like an oval amoeba shape which made it even more challenging. Finally at around 3 months post-op, it quit shrinking and stayed one shape. I have now been using the same pattern to cut the hole in my wafer for a couple of years. I had to change my appliance brand at about three months post-op too because my skin suddenly started to hate what I had been using. I cannot tell you how many times I broke down in tears when changing my appliance those first few months. It was so frustrating, but I got through that learning curve and now things are so much better. You will get through it too!
Best of luck!
-Heidi