I suffered from burning pain around my stoma since receiving my first ileostomy. My stoma is constantly changing size and shape and I’ve never been unable to get a good seal around it. After trying just about every paste, powder and barrier wipe on the market I had pretty much accepted the pain would always be a part of my life. I would be trapped changing my bag every day or if I was lucky every other day and I was trapped with suffering from this excruciating burning pain that I would never be able to escape. But after one disastrous date with a girl I really liked created the motivation I needed to fin a solution. It took years of research, trial and error and looking beyond the traditional medical establishment to find it. I found that using a numbing spray with Lidocaine plus a Stoma Collar proved to be a winning combination and to this day I am no longer a victim of this horrific mind twisting, social life destroying, self-esteem crushing pain.
The burning pain is like battery acid. It is an insistent pain that I could never escape from once it starting. No mental trick, no staying busy or engaging in other activities ever helped to remove the pain signal from the front of my mind. It interfered with every aspect of my life. I’ve had holidays, weekends, dinners and a hundreds of normal days ruined because of this pain. I tried different powders, pastes, seals wafers, and other products and nothing helped. Then I thought if I can’t protect the skin around my stoma then maybe I can numb the pain. That was an epiphany. All the times I told my doctor, my surgeon and my ostomy nurse about the pain not one suggested this. While I was researching late at night accompanied by the burning pain, I ran across an article about how women after delivery would be advised to use Dermablast to numb their nether regions. I’m not a woman nor have I just had a baby but I did have a painful skin problem so I figured why the hell not give it a try. When I tried Dermablast for the first time I couldn’t believe the result. For the first time after decades of sufferingI had a weapon, besides changing my bag, that would relive the burning pain.
From then on whenever the pain hit I would simply uncouple my bag (I’ve always used a two piece system) clean around my stoma and spray. The pain would vanish in less than thirty seconds. Two problems became apparent early on. The granulated bleeding seeping skin that had developed around my stoma was still present and the Dermablast cans were too big to fit into my pocket. I was forced to carry a messenger bag or a backpack with me at all times to contain the can. It would take another year and a half before I solved the later problem but I quickly found a better delivery system for the Lidocaine than the Dermablast.
Bactine has been a staple of my ostomy kit every since I first used it. The pump dispenser is far superior and more gentle than the Dermablast and I’m able to fill up a small pump bottle with it that fits discreetly in my pocket. I found a package of small empty pump spray bottles ranging from 10-30ml on Amazon. My regular routine is to carry two of them. One filled with a biologic odor eliminator and one filled with Bactine. They are so small no one knows I have them in my pockets. I no longer have to carry a messenger bag or a backpack. Traveling light is a great feeling. I can go to dinner with no encumbrances, I can got to a movie and not worry about suffering through it with the burning pain, and I can be assured if I am on a date I can quickly go to the bathroom spray the skin around my stoma and be back at the table, pain free in less than five minutes. This opened up life for me in a way I can’t put into words.
Even though I had found a great solution to my burring pain it didn’t address what was causing it. My granulated tissue still persisted. I was still changing my bag about every other day. I read with envy the stories from people who changed their bags after 3 or 4 days and I thought the people who said they wore theirs for 5-7 days were bold faced liars. On top of that the effectiveness of the Lidocane only went so far. The spray took the pain away but if the pain was particularly bad , the relief would only last for minutes instead of hours. This was something I had to fix. Again I reached out to all the professional medical people I’m supposed to see, ran up more co-pays spent days wasted going to their offices only to be told there really isn’t more they could do for me. One surgeon did use silver nitrate to try and cauterize the granulated skin in an attempt to eliminate it. The procedure was extremely painful and and didn’t help. (He didn’t offer a refund either) Even after this failure I wasn’t going to give up. If I found a solution to controlling the pain I knew I could find one for healing the granulated tissue.
After exhausting tons of different wafer designs and another round of trying pastes and different seals I found my solution. During one of my late night research sessions I came across a video for the product that changed my life and helped me to heal my skin. It was a video for Salts Stoma Collar. An amazing invention that is a hydrocolloid collar that snuggly encircles the stoma and has a flat bottom that adheres to the skin. It moves with the stoma and prevents stool from getting on the skin. I ordered samples that night. After about two weeks I received a huge bag full of samples including the stoma collar. The one supplied was too big but I could see its potential right away when I put it on.
Salts didn’t and still doesn’t have U.S. distribution. I found a Canadian company to buy from. Unfortunatley insurance doesn’t pay for these. But the cash lay out of about $200 was well worth the investment. I ordered two sizes and one of them fit great. Once I found the right size and started wearing the stoma collar on a regular basis the pain was almost nearly gone, my granulated skin disappeared after four or five months, and I now could wear my bag for four or five days. While I was in the hospital I could even wear it for seven days, which I thought was an impossibility not more than a year before. The Stoma Collars greatly improved my life. For over a year I used the collars and only stopped using them recently. I’ve had a lot of bowel obstruction problems lately and decided to go back to my Eakins for now. My stoma needs free reign and I’m not eating much so I don’t have as much output and thus not much burning pain. And if the burning pain does show up, which it does a few times a week, I can trust my ever present Bactine to put a quick stop to it.
If you are struggling with ostomy issues don’t give up. Don’t give up if your doctors and ostomy nurses have no more solutions. Don’t give up if you’ve tried every product available. New products are being developed all the time. Don’t give up on living because of pain. Don’t give up. Pain is horrible. Chronic pain that you can’t do anything about can ruin your life. It can create a sense of helplessness, it can separate you from those you love, or those you want to get to know, it can make your withdrawn, it can warp your personality, and keep you from enjoying life more fully. My life changed only when I refused to lose any more time to the burring pain, The pain only yielded to determination, persistence, and my unshakable belief that I would find a solution. Only then did I find the products and procedures that put an end to the reign of the horrific, mind consuming, burning pain.
The end of pain is the beginning of pleasure.
Link to Where to purchase Salts Stoma Collars – This website I’ve ordered many times from. It’s a Canadian company and orders usually arrives in ten days or less. Shipping I think is $24.
Link to Salts – Stoma Collar information
(copy and past to follow above links)
Small Pump Spray Bottles at Amazon