Ostomy Odor Control – Three Solutions that work for me

Shit stinks. That’s a fact. And the fact I have an ileosotmy makes me even more aware of this non-negotiable truth of life. But I do believe that ever problem in the world has a solution. I’ve found three solutions for controlling and even eliminating my ostomy odor > I use a three prong strategy of eating certain foods and avoiding others, and having with me at all times, a biological odor eliminator spray and biological eliminator drops.

1. Parsley, green leafy veggies, sweet potatoes, and Tea 

Food has become almost an obsession in my life. Food is truly an amazing tool for health and for specifically for odor control. Parsley is my number one food for controlling odor. I’ve even sat in a Publix parking lot (before I started boycotting them) stuffing my face full of parsley because I was meeting a woman for dinner. That day at work my output was atrocious and I didn’t have my drops with me.  My diet was basically Chickfila and Zaxbys back then so its not surprising  I was having issues. I had to drive an hour through Atlanta traffic to meet her and by the time we sat down to eat the parsley was already doing its job. After I had a full bag the odor was completely neutral. Now if you do try this I must warn you that it took me a good ten minutes to get all the small parsley bits out from in between my teeth.

http://www.naturalnews.com/035599_parsley_superfood_blood.html

Now my diet is much better. I follow mostly the Primal diet and have become a Primal Health Coach this year. By avoiding sugar, wheat, vegetable oils,  and fried foods I have less issues with output odor. I do still have issues on certain days and by eating green leafy veggies, sweet potatoes and herbs, especially parsley, I’m able to control it to a large degree. I have also had a great deal of success incorporating different teas into my diet as well. Green Tea, Yerba Mate, and especially Roobios all have a positive impact on the odor level as well. Food is a powerful tool that is my first line of defense against offensive odors. I do avoid fish the day before and the day of being out of the house and around other people. Fish oil capsules are another thing I avoid. Instead I’ve had a lot better luck with Krill oil. With them I have almost no fishy output odor and have all the omega 3 benefits.

This is the Roobios tea I really like. It also settles the stomach when I’m nauseated.

https://www.amazon.com/ROOIBOS-Delicious-African-Caffeine-Unbleached/dp/B00F2GW4J2/ref=sr_1_1_a_it?s=beauty&ie=UTF8&qid=1477883160&sr=8-1&keywords=rooibos+queen+tea

2.  Biologic Sprays

I rarely leave the home without a small 10,20 or 30 ml spray bottle full of biologic odor eliminator. Even if I use a public restroom I normally spray before I empty my pouch. I think that is the right thing to do. I’ve tried many different brands and right now I’m using April Fresh Biological Odor Eliminator. It works great. In the past I’ve used Medi-Aire products and Hollister M9 and was happy with both of them. The problem with these products is that the smallest bottles they come in is 1 ounce. For me thats way to big to fit into my pocket. That is why I use 10/20/30 ml small spray bottles from Amazon. I usually fill up the 20ml or the 10ml with odor eliminator and put it in my pocket. No one even knows I have it. They have been a lifesaver.  It is a powerful feeling knowing I can use the restroom somewhere and not be embarrassed. The smallest bottle is 10ml and it holds enough biological odor eliminator to cover me for a few days. If you do try different biological eliminators test them at home first. I’ve found some that have left a sticky residue on the bathroom floor after spraying.

These are the small spray bottle I use everyday.

https://www.amazon.com/gp/product/B00CL6QE92/ref=crt_ewc_img_srh_1?ie=UTF8&psc=1&smid=A2M3901IWS8OJU

3. Drops

This is an option I don’t use a whole lot  any more but I do carry a small 20 or 10ml spray bottle in my pocket which is filled with the drops. It’s nice to have them as a backup. I don’t think they have ever worked 100% for me. Even when I used five to ten times the recommended amount there was still an lingering presence that I couldn’t get rid of. I’ve used Holister M9 drops and found them as good as any others. If my skin is particularly bad around my stoma I do avoid the drops because if they make contact with the excoriated skin it can burn. Still they are great to have if I’m out and about and due to dinner my output odor changes in a big way. Sometimes the odor is so bad it can leak through the plastic of the bag. This is when the drops especially come in handy.

https://www.amazon.com/507715-Hollister-Odor-Eliminator-Drops/dp/B0013UANSA/ref=sr_1_4_s_it?s=beauty&ie=UTF8&qid=1477882977&sr=1-4&keywords=m9+odor+eliminator

I’ve almost conquered my fear of ostomy odor. It still plagues my mind and I’m always super sensitive to any slight change of the surrounding smells. I’m always monitoring to see if I’m the cause of a bad smell. I think I’ll always have that anxiety. But through a few lifestyle changes and a couple spray bottles filled with chemicals, I’m able to go to another person’s house and not be overwhelmed by the fear that their guest bathroom is beside the kitchen. Living with an ostomy is fraught with fear. Any time I can eliminate one of these fears my life expands in a positive direction.

If you have any tips on eliminating ostomy odor please leave a comment.

Wishing you an expanding life,

Brad Miller

 

Burning Skin Pain, Bactine, and Stoma Collars

 

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.

Brad Miller

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.

http://myostomy.ca/search?q=stoma+collar

 

Link to Salts – Stoma Collar information

http://www.salts.co.uk/Our-Products/Stoma-Solutions/Product.aspx?ProductID=PROD20

(copy and past to follow above links)

 

Small Pump Spray Bottles at Amazon

https://www.amazon.com/gp/product/B00CL6QE92/ref=oh_aui_detailpage_o08_s00?ie=UTF8&psc=1

 

 

 

 

 

Stoicism, Anxiety and Chronic Illness

“Very little is needed to make a happy life; it is all within yourself, in your way of thinking.” Marcus Aurelius

I’ve hated holidays, weekends and especially my birthday ever since I was diagnosed with Ulcerative Colitis at the age of 11. There were emotional, social and physical factors that caused me to dread of these cultural happy events. I still feel anxious when my family mentions going on holiday or when my brothers are planning a fishing or hunting trip. The anxiety wells up because I want to participate but I know that pain, fatigue, fear of new environments, and changes of schedule will 9 times out of 10 back out of going or if I do go I’ll not enjoy myself. That’s because the problem with being chronically ill and in constant pain is that my body and mind are the cause of my miserable state. And I’ve been miserable most of my life and especially during these so called happy times.

I used to think that my reaction to life, my anxiety and fear surrounding holidays, weekends and my birthday was a character defect. I thought that I was mentally weak because I couldn’t consistently overcome my negative thought patterns to build a life I was proud of. During these “happy times” I was always reminded about how much was missing in my life because of my chronic pain and chronically feeling like shit. I don’t have a mate, I don’t have my own place, I don’t have a social life…The don’t have list was constantly on my mind during these events or prevented me from participating all together.

The mental anxiety was warranted because I would get physically ill because of changes in my eating, drinking and resting patterns.  This coupled with the host of negative emotions of being different, worrying about passing gas through my stoma (uncontrollably) and the prospect of experiencing the humiliation of filing someone’s home with the horrific smell that only an ileostomy can produce produced near panic levels of anxiety. Needless to say I’ve not been very socially active in the past 30 years.

I’ve only been to one Christmas party in the last ten years. And I was miserable the whole time. The bathroom was in the kitchen where a lot of people were congregated, there was almost nothing I could eat there without being sick, and on top of that I was in horrific pain. The anxiety of having to dump my bag in the bathroom right beside the kitchen was horrible. So I waited as long as I could but I finally had to give in or my bag would start leaking and then I’d have to tell my brother and his family I had to go home. Ruining other people’s good time is another one of my constant fears as well. I still feel sick to my stomach when I remember the anxiety of dumping my bag there. Going to new places and being away from my home bathroom is a huge deal to me. I’ve actually developed a small kit I carry with along with useful strategies that help me feel less anxious and more in control of my ileostomy variables. (I’ll share my tips and what I carry in my small kit in later posts)

Being chronically ill actually changes the way my brain functions. It has been shown recently that the immune system (lymphatic system) is directly connected to the brain. And nuero-plasticity science pioneered by Dr. Michael Merzenich author of  the book “Soft-Wired” writes about how the brain can be rewired throughout our lives. When we focus intently on something this can strengthen connections between certain neurons and weaken connections between others. These connections are associated with learning, actions and emotions.I’ve allowed negative thoughts to become runaway mental trains that soon overtake all other thoughts while I’m sick and these have create tracks or pathways that become easier and easier to fall in to each time I indulge negative thoughts and allow anxiety to overcome me. But I know that I have the power to further rewire my brain to undo the damage and  that’s one of the reasons why I’ve been drawn to Stoicism. Stoicism is an ancient belief that teaches that we are in control of what we determine is good or bad and that having a positive peaceful mental state is the only thing that is needed for a happy life.

http://www.soft-wired.com

https://news.virginia.edu/illimitable/discovery/theyll-have-rewrite-textbooks (article on the physical connection between the immune system and the brain)

The power to rewire the human brain can have be used for positive and negative effect. Unfortunately  when I’m really sick I tend to lose the rational ability to think and focus on concepts like neuro-plasticity and I fall into old thought patterns of what scientists call “sickness behavior”. In fact its been discovered that cytokines, the chemical messengers of the immune system, can have dramatic affects on the brain. The discipline of psychoneuroimmunology studies these effects on the brain. Sickness behavior is what drives animals to be alone when ill, lose their appetite, and display other behaviors like avoidance behavior that we identify with being ill. There are definite chemical changes that happen in the brain when large amounts of cytokines are released into the blood.

http://neuroschoolrome.univ-lille1.fr/faculty/dantzer/bbimmunity07.pdf (in depth look at cytokines and their role in inducing sickness behavior)

As I’ve grown older I’ve discovered ways of overcoming or at least mediating these anxious and negative feelings. Knowledge about my condition and learning how to lesson some of the more unpleasant aspects of having an ileostomy have all been helpful. But I still have trouble with my thought patterns, staying positive, planning for the future, and being active each day consistently working toward specific goals.. Being sick and in pain separates me from “normal life”. I have to force myself to reach out to my family when I’m sick. I have to force myself to try new things and to finish projects I’ve already started. There are certain biological factors that create my “sick brain” and the physiological changes do effect my behavior and thought patterns in powerful ways. Doing everything I can to lower inflammation or lower my over active immune response is key for me to lower the physical threshold I have for living a healthier and happier life, and that includes lowering my stress response to daily life.

https://en.wikipedia.org/wiki/Psychoneuroimmunology (good overview of this discipline that focuses on the connection between the brain and immune system)

Stoicism is an ancient belief system that developed during the Greek and Roman times. It is a philosophy that focuses on creating a peaceful internal mental state.

“You have power over your mind not outside events” Marcus Aurelius

These are some of the lessons of Stoicism I’ve learned and applied in my life:

  1. Emotions are generated from within
  2. The internal mental state is what is truly important
  3. Your thoughts are powerful and you should guard them accordingly
  4. You have the ability to label an experience good or bad
  5. Live in harmony with nature. Humans are not separate from nature.
  6. Don’t worry about the future. Now is the time to live.
  7. Failure is temporary. It is too be learned from.
  8. Adversity should be viewed as a vehicle for demonstrating virtue – patience, self-compassion, and strength.
  9. Gratitude for what we have is vitally important and creates a peaceful mind
  10. Our life is our responsibility
  11. Being a good friend is one of the best things in the world
  12. Expectations and anticipation can cause unnecessary suffering

“Expecting is the greatest impediment to living. In anticipation of tomorrow, it loses today.” Lucius Annaeus Seneca

A lot of times I’ve suffered needlessly because I’ve held on to the expectation that I would live a “normal life”. I missed most of junior high and high school. My biggest relationship I have is with my pain and illness. I’ve had only one serious girlfriend and that was almost twenty years ago. I don’t have kids or have a home of my own. But I can be happy and content in the present without accepting this as fate. Stoicism doesn’t teach apathy. It teaches strength, courage, and tenacity in the face of adversity and focusing on having a peaceful unperturbed mind even though storms rage outside, or rage inside for those of us who are suffering from chronic pain and autoimmune conditions.

“The wish for healing has always been half of health.” Lucius Annaeus Seneca

Health was a huge concern for the Romans as it is for humans in today’s society. Seneca is one of the three pillars of the Stoic tradition and he understood the connection between the mind and body two thousand years ago. Instead of focusing on everything that is wrong with me I try more and more now to focus on the state of health I want to experience. A strong body that is free of pain and all my organs performing their function properly. This idea also foreshadows the idea of visualization which a lot of health practitioners are recommending to their patients.

https://www.psychologytoday.com/blog/flourish/200912/seeing-is-believing-the-power-visualization

Below  is another one of my favorite quotes. All the Stoic writers were very intelligent and viewed the Stoic philosophy as a practical guide to maximizing a human’s experience on Earth while engaged in living. What I especially like about Seneca is that he participated in life. He was not monk or a priest. He acquired wealth and enjoyed the finer things in life but still he struggled with what I struggle with as well. He suffered later in life with chronic pain and even contemplated suicide. He stuck around because of his father.

“Sometimes even to live is an act of courage.” Lucius Annaeus Seneca\

This quote has helped me through some of my worst days. I don’t give myself enough credit. I’ve endured for thirty years pain, fatigue, loneliness, financial struggle, uncertainty, hospital stays, surgery, thousands of needles, countless medications and I’m still here. If you’ve endured or are still enduring with health challenges don’t beat yourself up. Sometimes just getting out of bed and showering are acts of courage. Remember your strength. You can continue to endure and even thrive in the face of adversity. That is a lesson I’ve taken to heart from the Stoics as well.

“There is nothing in the world so much admired as a man who knows how to bear unhappiness with courage.” Seneca

When I read Seneca’s letters which are the main source of the above quotes, its as if he is speaking directly to me. Stoics were interested in helping each other live a happier life through controlling one’s thinking. They could be viewed as some of the first pioneers of the self-help movement and even the hippie new age movement. I used to struggle with the fact I didn’t feel I was a part of nature. I was so flawed that I didn’t even feel “human”. This quote continues to inspire and remind me that I am “natural” no matter how many organs I’m missing or if I have to defecate into a plastic bag.

“Everything is the product of one universal creative effort. There is nothing dead in Nature. Everything is organic and living, and therefore the whole world appears to be a living organism.”  Seneca

I view Stoicism as an anti-inflammatory means of organizing my thoughts. My attitudes and beliefs determine my emotional reaction to external stimuli. I have the power to determine if what I’m experiencing is good or bad. This goes along with what Viktor Frankl wrote during his experience while imprisoned in a concentration camp during WWII.

“When we are no longer able to change a situation, we are challenged to change ourselves.”

Applying the teachings of Stoicism in my life helps me to lessen the impact emotions have over my body and mind, helps me to detach emotionally from the outcomes and to accept pain and loss as part of the price of living as a human being. Stoicism isn’t meant to turn me into a robot that has no feeling or passively accept life as it happens. Rather it helps me to experience emotions in a more productive way and that allows for a happier existence in spite of being chronically ill and in near constant pain. Being “stoic” doesn’t just mean suffering in silence. It teaches the old school values that used to be valued in society, patience, kindness, self responsibility, courage, and  having a positive attitude. But the teachings of Stoicism also do help me to endure pain, loneliness, loss, and overcome the anxiety of living chronically ill. I don’t buy into all that Stoicism has to offer. But I do believe in the taking of what is useful from any source and applying it in my own life. And Stoicism is chock full of ideas that I’ve found helpful.

http://blogs.exeter.ac.uk/stoicismtoday/what-is-stoicism/ (an excellent primer on the teachings of Stoicism)

Two thing are occurring in my brain when I feel awful. There are chemical changes and also physical changes. Reducing overall inflammation is a great way to limit my the sickness behavior response. One of the best ways for me is to reduce my anxiety and I’ve found Stoicism to be an excellent tool to do this. The mind-body connection is a powerful one and its a two way street. I have the power to choose not only what I think but also what I feel according to my attitude. Stoicism for me is a philosophy of optimism and empowerment. To this day I still struggle with anxiety. The thought of another tomorrow filled with the pain fills me with dread. But I know that I have the power to create a more peaceful internal mental world by what I focus on. Stoicism helps me to focus on positive actions I can take in the moment and to accept the things I can not change.

One of the most powerful pieces of Stoic writing for me is Seneca’s piece “On the shortness of life”. This is a youtube audio version of it. https://www.youtube.com/watch?v=EYWEAa-D5vM

Also check out Tim Ferris’ blog. This is an article on how entrepreneurs can apply Stoic lessons in their lives but I believe it also is helpful for people who are chronically ill or dealing with chronic pain as well.

http://fourhourworkweek.com/2009/04/13/stoicism-101-a-practical-guide-for-entrepreneurs/

Stoic in Training

Brad Miller

If you’ve found Stoicism or other philosophies helpful in your own life please share your experience below.