My attention was drawn to a a story about a young gal named Misty Blue. Misty has dealt with numerous hardships in her life, including Ostomy. The videos below are her story, told by Misty herself, about being born with a major birth defect, losing her mother while very young, living in foster care, marriage and her life in nursing. Her story is inspiring.
The videos below were originally recorded for an international conference in 2009 and has since has been viewed in over 8 countries. And now, I’ll let Misty speak for herself!
Note: A big THANK YOU to Thomas Exler for contacting Ostomy Guide with this amazing story! If you have a group or know a group that would like to see the “My Name is Misty Blue” video presentation, please fill out our contact form so I can get you in touch with Thomas. He can prepare a DVD copy for you or make arrangements for Misty to possibly come speak.
Great Comebacks, sponsored by ostomy supplier Convatec, announced their regional award recipients in mid-October.
If you don’t know already, Great Comebacks is a recognition for the achievements of individuals overcoming serious intestinal diseases, cancer, and other health conditions leading to ostomy surgery. The chairman of Great Comebacks is former San Diego place-kicker and Ulcerative Colitis patient Rolf Benirschke.
Great comebacks also participates and partners with many related groups including the United Ostomy Associations of America, Crohns & Colitis Foundation (CCFA), Intestinal Disease Education and Awareness Society (IDEAS) and several others.
Here are links to the regional winners, for each of their biographies on the Great Comebacks site:
This recognition, announced in October 2010, will also honor these four folks on June 4th, 2011 as one is chosen for the National Award at the 43rd WOCN (Wound Ostomy and Continence Nurses) Annual Conference in New Orleans.
Let’s hope their stories may help serve as awareness, inspiration and encouragement for those who are facing Ostomy surgery!
ConvaTec is an ostomy supplier providing numerous lines of pouches, wafers, and appliances to improve the quality of life of ostomy patients. See the Ostomy Guide ConvaTec Product Catalog for a list of products and associated codes, including the popular Convatec Stomahesive paste.
Let’s discuss about common ostomy and stoma complications faced by Ostomates.
1) Hernia – Since ostomy surgery affects the abdominal wall, hernias are a common concern among ostomates; hernias occur when the muscles in the abdommen detach or tear and portions of the intestine protrude through these tears in muscle tissue; the skin bulges out and the stoma may also jut out further from the body. Unfortunately, when hernias arise, they’re more likely to be persistent, even for those who have undergone surgery. Hernias can make pouching difficult since the bulge will change in size and shape with standing/sitting/laying down.
It’s best to take the precautions to prevent them from occurring when possible. Talk with a doctor about any physical activity/scenarios you should avoid. There are many reasons claimed why hernias appear so frequently with Ostomy patients; most seem to form within the first 2 years of stoma surgery.
2) Prolapse – A prolapse is when the bowel protrudes through the stoma opening at abnormal lengths. They can vary in length and if untreated are susceptible to infections trauma. A prolapsed stoma can make maintaining the ostomy and pouching increasingly more difficult and extreme cases can lead to blood constriction, which will deteriorate the prolapsed bowel. A prolapsed stoma should be managed with suitable ostomy supplies large enough to accommodate the stoma to prevent further damage. The stoma should be inspected by a doctor to ensure there’s no blockage of output or blood that could result in constipation or abnormal tissue.
Prolapse is typically the result of ostomy surgery and are usually caused by an enlarged opening in the abdominal wall. It’s most common in certain types of temporary Ostomy surgeries. However, prolapsed tissue should be watched carefully, and it is recommended to use transparent pouching to visualize the stoma on a regular basis.
3) Retracted Stomas – A normal stoma has a slight protrusion from the skin level; this allows it to fit with ostomy appliances and the skin is protected from stoma output. Retraction is when the stoma is flush or below skin level. Sometimes the stoma may protrude when standing but disappear in the skin when sitting. Retraction is relatively common, with about 10 – 24% of stoma patients experiencing retraction. It’s also more common with ileostomy than colostomy and tends to affect heavier (or obese) patients more frequently.
Retracted stomas can cause problems with leaking with standard pouching systems. A retracted stoma is far more prone to leaks since the stoma outputs its contents directly to the skin. This can compromise the adhesives on barriers and cause skin irritation if not cleaned regularly. However, there are solutions to help prevent leakage and keep the skin clean and the barrier safe:
Convex Barriers/Wafers – The curved shape of the barrier helps the stoma protrude enough to keep the contents from leaking under the barrier.
Ostomy Belt – Helps support the barrier and the pouching system to prevent leaks by supporting the appliance around the waist.
Adhesives – Some barrier adhesives provide an extra tackiness that is far more waterproof; these adhesives can help prevent the skin and wafer to be compromised by leaks.
In extreme cases, a doctor may recommend surgery to fashion a new stoma through the skin.
3)Blockages – Blockages are most common among those with ileostomy. They are caused by food and contents of the bowel, and they’re usually noticed quickly with cramps combined with no stoma output. Swelling may also occur. Certain foods may cause blockages; see our post on Ostomy and Diet/Nutrition and its resources to learn more about foods.
It is suggested to try a warm bath and drinking warm fliuds to relax the muscles and allow the blockage to pass through. A doctor should be consulted if the blockage is not passed within 24 hours.
4) Peristomal Irritations/Infections – The integrity of the skin surrounding a stoma is under constant stress by adhesives, pouching appliances, and bowel fluids. It requires careful wear and cleaning to ensure the skin stays dry, clean, and safe from inflammation and irritation. If left untreated for too long, these can develop into nasty infections that, in serious cases, can lead to suffering that is often preventable by using the right appliances, adhesives, protective skin creams and cleaners.
The best defense against skin irritations and infections is to know what products you need to prevent them and using them correctly. The correct ostomy supplies for your lifestyle makes a big difference in your quality of care. Talk with your nurse/doctor and check the fantastic ostomy resources online to find more information on the correct use of appliances and to discover the products that have worked well for others.
Ostomy Guide sponsor STLMedical.com now accepts Product Reviews for all Ostomy supplies. Reviews are presented below each product. So if you’re an experienced ostomate with comments, suggestions, and tips on using your ostomy supplies, submitting a product review helps others make informed decisions and find the best supplies they need.
You can get $5 off of a purchase of $25 or more on STLMedical.com Use promo code IREVIEWEDAPRODUCT for your ostomy supply purchase to get the discount.
Sources & Additional Resources:
Fecal & Urinary Diversions: Management Principles By Janice Colwell, Margaret T. Goldberg, Jane Carmel
Stoma injury of any kind is a constant concern for ostomates; especially those who are active in sports and activities. Injury is an unpleasant topic, but facing the reality helps prevent injuries and ensure good quality of life.
Stoma injuries can be caused from incorrect pouching or pouching accidents, tight belts, or external blunt force (getting hit with something, for instance, a ball or foot). The injury may bleed some and typically looks white or red. Generally, if you’re experiencing this, it’s likely you know the cause – but if you don’t, be mindful to understand what caused your injury so you can correct a possible persistent problem.
Tips to avoiding and treating injuring a stoma:
1) Activities with a lot of friction and impact like combat sports (martial arts, karate, wrestling) should be avoided since they put the stoma at risk of damage, or to the skin surrounding it. Weight lifting and strenuous exercise are enjoyed by many ostomates, but should be discussed with your doctor if you’ve recently had surgery so you’re aware of any limitations (either physical or while healing) so you can be assured you won’t create an injury.
2) Be Sure You’re Using Your Ostomy Pouch System Appropriately – Using your appliances incorrectly increases risk of injury. If you have questions about how to use your ostomy supplies or a new product, ask an Ostomy nurse for assistance so you’ll get the most out of it and prevent hurting yourself!
3) Try Ostomy Armor – a belt and plate that you use over a stoma to protect both your stoma and the appliance. It’s perfect for playing sports or activities where external force is possible. It’s medicare approved for insurance reimbursement and can be worn on commercial air flights.
4) Cleanliness – If you’ve experienced an injury, keep the stoma and the area around it tidy and clean. Irrigate with Saline Solution (you can purchase this or make it yourself) and ostomy cleaning supplies that keep the area clean and fresh. There are also a number of skin protecting creams and products designed to keep stoma output and mucus from compromising the skin or the site of an injury/irritation. Spending the time and using the right products to keep clean will make you feel better, reduce odor and prevent infections and irritations from developing.
While most injuries can heal on their own, if you’re experiencing abnormalities and discomfort from a stoma that cause you pain and discomfort, you should talk with a doctor. No advice can always address your specific personal needs, nor is it worth your health to assume so! While these guidelines can help you, if you’re suffering from an injury that needs treatment, you should talk with your doctor.
Have you ever had an injury to your stoma? Have any more tips or stories to help others prevent them from occurring? Please leave your comments below!
Before we get started, let’s cut to the chase: for most ostomates, a stoma has little or no effect on the ability to enjoy sex, regardless of sexual preferences or lifestyle before surgery.
Sexuality and ostomy are complex subjects with many facets: the physical, emotional, and psychological pressures are major influences in ones’ life. Below, we will break down these issues to directly discuss the physical considerations (both after surgery and ongoing), and then the psychological and emotional considerations for sex and ostomy.
For a new ostomate, the first few months after surgery can present many unique physical challenges. Depending on the type of surgeries performed, medications administered, and which body parts are affected will determine how soon you can perform sexual intercourse. Most anxieties of post-surgery ostomates about sex are alleviated after a few months, and over time, as the body heals, most will find they can have sex just the same as before they had their surgery.
Physical factors aside, here are a few psychological issues faced by post-op ostomates are:
Initial anxiety due to physical changes & fear of injury
Feelings of loneliness or a sense of rejection
Inability to achieve an erection / lubrication / orgasm
Sex and Intimacy Tips for Post-Op Ostomates
For a partner of a new Ostomate, being supportive and patient are the best things you can do.
Don’t fret – sex drive and the bits-and-pieces usually rebound to full function again.
Intercourse can be painful the first couple times after surgery, especially if you haven’t had any for several weeks/months.
Sex doesn’t have to mean penetration. Oral, petting (foreplay), masturbation, toys, and any number of other sexual activities can be enjoyed.
After a full recovery from surgery and regular sexual function and desire returns, more thoughts and concerns arise about sex. Some common concerns and some information about them:
Fertility / Ability to Have Children – Most women can still conceive after Ostomy surgery without problem. Most men will also remain fertile, even if they cannot achieve an erection for a period after their surgery. Even if sexual ability is limited by surgery (due to surgery’s affects on the urological system and sexual nerve pathways), artificial insemination may be an alternative.
Injury to the Stoma – Ensure you/your partner is in a position that will not cause discomfort or damage the stoma.
Sexual Positions – Ostomates will find they can still enjoy sex in most positions. If some positions are uncomfortable or compromise the appliance, try something different until you find the best ones for you.
Odor – Many ostomates worry about odor and this can be a psychological factor as well. Before sex: don’t eat foods that create odors/gas, clean the skin around the stoma and wear a fresh pouch or empty and clean a drainable pouch prior to sex.
Sex Tips for Physical Issues and Ostomy
Communication is key in any sexual relationship. Ostomy and sex is no different. Let your partner know they won’t injure your stoma by having sex and communicate openly if something feels uncomfortable.
Important – no sex in or around the stoma. No anal sex.
For odor management, also try DEVROM internal odor control tablets and Hollister’s m9 Drop Deodorizer for pouches (a little goes a long way!). Burn candles and/or incense.
Empty the pouch beforehand when time allows. Keep everything clean and neat beforehand.
Check all fasteners and adhesives to ensure they’re secure.
Psychological & Emotional
Ostomy can be hard for both the patient and the healthy partner. In some instances where a patient has had surgery for debilitating health problems like cancer, the healthy partner helps to take care of the ostomate and certain bodily functions. Working through these hard times without sex can takes a toll on intimacy and it can take time for these couples to adjust and return to a healthy sexual lifestyle again.
There are some common psychological considerations for ostomates and sexuality. And they mainly have to do with…
– Desirability/Attractiveness: “Will my partner still want to have sex with me?” or “I don’t look like I used to.” Truth is, we put a lot of pressure on ourselves to appear a certain way and become sensitive to our differences when compared to others. Even further, we often assume that others judge us the same way we judge ourselves. But imagine if your partner, someone you care about, had the same condition and how you would feel about them. What would you be thinking, or how would you react? Most find their partner has a sensitivity and understanding towards the ostomy.
– Breaking the Ice/Fear of Rejection: For those who meet their partners after surgery, an ostomate has to find the right time to tell a partner about their ostomy. But when and how? What do you say? The best advice would be to tell someone earlier than later. When it comes to one’s health, it’s best to present the facts at face value with confidence and understanding that the person you’re telling may not understand what an ostomy is and how it affects your life. Explain the stoma, the surgery, and how it affects your physical abilities. Let them ask questions with the knowledge that they might not understand what to ask, or how to ask. Be patient. Typically, this understanding tone will be returned in full, but even if you are rejected, don’t blame it on your stoma – simply do what all single folks do and go fishing again. 🙂
Sex Tips for Psychological Issues and Ostomy
There are some things you can do as an ostomate to increase your confidence Below are some things many ostomates do to increase confidence for intimacy:
Wear a small, low-profile pouch such as Convatec’s Mini Pouch or stoma cap before intimacy. These pouches are more discreet, so they’ll be less invasive.
Many ladies also choose to wear a comfortable satin slip or camisole to bed with them. Men may wear a belt or similar support along with a pouch cover.
Here are some of the best options for low-profile mini-pouches:
Coloplast Mio Mini-Pouches – The Mio pouch line incorporates Coloplast’s latest BodyFit technology that conforms to the body’s contours and allows for a more flexible fit and a softer material that feels more like clothing than an appliance. The Mio line is pricier, but for comfort and performance you may want to keep them around, even if just for occasional use.
Convatec’s Mini Pouch – Convatec’s smallest pouch is just 5 inches and opaque, making it a great and affordable choice.
Coloplast’s Assura Mini Pouch – Coloplast Assura is a popular line of pouches; these 1-piece closed pouches are cut-to-fit to conform to the stoma.
Hollister Premier Mini Pouch – Hollister has a 7 inch mini-pouch in their Premier line of 1-Piece pouches that feature a SoftFlex barrier that is gentle on the skin.
A Few Last Thoughts…
There are some cases where physical impairment may prevent one from having sex. This can happen sometimes based on previous health and the types of surgery needed. Some types of colorectal cancer can result in removal of the nerve pathways that cause erections. In some cases, colorectal surgery can result in the vagina changing shape and structure. All of these physical changes can limit some types of sexual activity.
Homosexual couples deal with all of the same issues as straight couples. No matter your sexual preferences and difficulties faced, consult these issue candidly with a health care professional that understands your surgery. They can provide you with advice specific to your personal needs.
What is a Hernia?
A hernia is when there is a rip/tear in muscle tissue that causes a portion of the abdomen (particularly, the intestine) to bulge through. This causes pain when standing up, moving the abdomen, or any kind of tension on the abdomen including coughing, sneezing, laughing, bending over, picking up objects, etc.
What is a parastomal hernia?
Having a stoma can develop into an ostomy specific type of hernia called a parastomal hernia. Since a Stoma passes through the abdomen, it can compromise the strength of the muscular abdomen wall. These weakened muscles can come away from the stoma, weakening its integrity and causing the intestine to bulge.
A stoma hernia is typically not painful, but can be very uncomfortable and unnerving, not to mention more difficult to mange and care for. As the stoma grows, it can become more difficult to attach ostomy wafers and pouches. It can also eventually lead to intestinal twisting/kinking that can cause serious damage to the intestine by cutting off blood vessels. (This, of course, requires immediate medical attention as being left untreated can be very dangerous.)
What Causes Parastomal Hernia?
Coughing, sneezing, heavy lifting and being overweight all put pressure on the abdominal wall & a stoma. Over time, muscles can weaken to the point a stoma begins to protrude and push out due to the pressure of the guts behind it.
There are many possible origins for parastomal hernia to develop. Some are related to surgery and a poorly placed stoma or a developing infection around the border. Other causes are related to an individuals health, such as being overweight, heavy lifting, or any kind of physical strain, or a combination of these factors.
How common is parastomal hernia?
In the 1990’s, the United Ostomy Association found that a hernia is one of the most common complications for Ostomy patients. Ostomy hernias happen to about 30% of all stomas. It’s more common with Colostomy than Ileostomy and Urostomy.
How is Parastomal Hernia treated?
Surgery is the most common repair for any type of large hernia.
Typically, if the hernia is not recurring, doctors will recommend a Hernia Belt and appliance changes before recommending surgery. A hernia belt is designed for individuals with small hernias or those where surgery can be risky or further compromise one’s health. A hernia belt is a firm, wide belt that helps support the stoma and muscle tissue around it externally.
As for surgery, doctor opinions vary based on their preferences for proper care and an individual’s needs. There are two options for the surgeon:
1) To repair the muscle tissue around the stoma (either with stitching or mesh).
2) Create a new opening in a healthy spot and close off the old one.
In some cases, Option 1 isn’t applicable; either hernia is too large or the surgery is too risky. And some surgeons will choose to re-locate the stoma first and install mesh if the problem persists.
However, today, often a mesh is implanted instead of stitches. This is the ideal method of repairing a hernia.
A mesh is laid across the herniated muscle tissue, helping to hold the muscle together and increasing its strength & integrity. The mesh also speeds recovery times over other methods and and reinforces the tissue; patients can often be mobile again within a matter of days.
An Ostomy certainly increases the risk of a hernia. Discuss with a doctor and nurses for the facts and tips to manage your individual stoma – even if you do not recognize any pain. As with any hernia, this lessens the chances of developing a more cumbersome and large hernia requiring surgery.
Time to time…. maybe late night in bed, changing appliances, waiting for a checkup, or even when doing nothing else… your eyes flicker as your idle mind begins to wander the Seas of Self: Why do I allowing this condition to undermine my self-confidence, my well-being, my relationships?
These questions are common, especially among new Ostomates. So many individuals drudge through life without enjoying the confidence and full spectrum of experience they should, even if it’s not practical, useful, or helpful to act in such manner. And here’s a curious and rarely-asked question deviating from the less practical mindset:
Why does everything about Ostomy have to be so boring, serious and medical?
Let’s talk about Ostomy bags as a product for a minute – the logic that ostomy appliances must look and feel “medical” seems to follow the same pretentious logic that a police car looks impressive with 500 flashing lights attached to it (resulting in pointless, nightclub-esque epileptic-nightmare light shows every time they pull someone over); or anything regarding government is extra important by slapping an official-looking circular seal on it (eagles, stars, and flags, anyone?). Rarely do we ask – why are these things the way they are?
Obviously, making an ostomy pouch “look good” has zero affect it’s practical medical purposes. Making pouches “pretty” adds even more choices in the already overwhelming pool of possibilities in ostomy appliances, not to mention driving prices up while doing nothing to improve care.
But the fact is we’re people, and personal worth and aspirations in life are not always purely utilitarian like an ostomy pouch is. We like style, we like comfort, we experience a neverending buffet of feelings, thoughts, emotions in our single shot at life. And we do not want to spend the majority of our short time here focusing on the insecurities or negative feelings towards our medical condition. We desire to live life pursuing goals, influencing & improving on the lives of others. And when you focus on the bigger picture and away from the self you begin to explore what you are truly capable of! What does it take to pick yourself up off the floor, recover confidence, and/or start doing the things you keep telling yourself you’ll do?
Ostomy pouch covers have helped many Ostomates with both practical needs as well as their personal mindset of having an Ostomy. Something as simple as a pouch cover worn over an Ostomy appliance helps boost confidence by concealing the appearance of the Ostomy collection pouch and eases the tension many feel during, say, intimate encounters. Ostomy pouch covers also serve many practical purposes, for instance, the soft cotton fabrics eliminate the uncomfortable “plastic” feeling of the pouch that generates heat and sweat or irritates the skin. They can also help support the weight of the appliance as the bag begins to fill and keep clips tucked away with drainable collection pouches.
And, with those practical uses aside, an ostomate may choose to use a pouch cover for the same reason someone wears a hat, buys a nice watch, or why kids like to color casts on healing bones – it takes a lighter tone to one’s more serious condition, and many times it simply looks nicer. So no, your ostomy pouch doesn’t have to look medical. And if this helps you feel better about yourself, your activities, and your life style, by all means wear it and wear it proudly. Express yourself freely and without shame or fear.
Ostomy accidents can happen – leaks, blowouts, strong odors; you name it, if its prone to causing embarrassing situations, it’s probably going to happen at some point. But with some help (and experience), you’ll soon know how to manage the potential disasters prone to any situation.
Maintain a good outlook of things, learning to laugh through life’s hardships can ensure that you’ll live longer and happier. But all proverbial optimism aside, here are some straightforward tips and products that can help you to best prevent and manage accidents with an ostomy in your normal day-to-day life.
Sunday, July 25th was Ostomy awareness Day and the Internet was active with osto-activities!
The Hollister supported C3Life.com pledge to donate $1 dollar per tweet went extremely well – in fact, the maximum donation of $2500 was reached! I even noticed an ostomyday tweet by Alyssa Milano, who has, like, a gazillion Twitter followers.
Daniel from the Talkin’ Bout Guts (along with a few others!) endured a full day of broadcasting with live chat, streamed from the Talkin’ Bout Guts Website.
C&S Ostomy Pouch Covers pledged a donation of 10% of sales on Ostomy Day and 2 free covers for any purchase of 6 covers or more.
This is largely an online, social-networking awareness event for Ostomy. Show your support by:
Changing your profile picture to the UOAA logo.
Changing your Facebook status to the day’s slogan.
Tweeting and Blogging about Ostomy Awareness.
Encourage your Friends, Family, and Local Support Groups to participate!
“Ostomates Unite and Help Place The Ostomy In A Positive Light! Celebrate UOAA’s Ostomy Awareness Day!”
Some other things going on for Ostomy Awareness Day:
1) TalkinBoutGuts.com has an online Podcast about ostomy. They want to go 24 hours LIVE all day on Ostomy Awareness Day and need some co-hosts and participants to help make this happen. Contact them through Twitter or the Talkin’ Bout Guts Website.
2) STLMedical.com, our site sponsor, is donating 5% of all ostomy supply sales to the UOAA from July 3rd – July 27th, 2010. (There’s a couple days after the Ostomy Day event to participate.)
3) The UOAA has opened an online store with an “I (heart) my Ostomy” shirts and UOAA merchandise: Find them here!
4) C&S Pouch Covers is donating 10% of all sales on July 25th to the UOAA. And, if you order 6 pouch covers, you will get 2 free. Visit C&S Pouch Covers here.
5) c3Life.com has pledged a donation of $1 for every Tweet with the tag #OstomyDay on July 25th, up to $2,500. Be sure to participate between the fundraiser time of 12:00am to 12:00pm, and ask your friends and family to as well!
We’ll add to this page as we know of more goings-on, so bookmark it through the event and feel free to comment or contact us with any more Ostomy Awareness Day activities!