Living with an ostomy affects the ostomate (the person with the stoma) as much as it does the caregiver (anyone helping to care for, or live with, the ostomate). For caregivers, whether they’re professionals, children, spouses, or parents of the ostomate, it’s important to learn how to provide proper ostomy support.
Both the ostomate and the ostomate’s loved ones will typically experience major changes following an ostomy surgery. The good news is that becoming familiar with all that is involved can make a huge difference in everyone’s ability to transition well to their “new normal.”
The Ostomy process
Once the patient has had ostomy or stoma surgery, they are beginning their way in the ostomy process. It cannot be overstated how important the family caregiver, as well as other family members, is at each stage of this process.
Here is generally what to expect, although it is important to recognize that each individual will experience recovery and adjustment at their own pace, and the caregiver will, most likely, take their cues from their loved one, or the one in their care:
Immediately Following Surgery
Regardless of whether or not the stoma surgery was planned, the patient will be overwhelmed by the physical changes in their body, which may lead to emotional issues. Home care will be frightening, their quality of life may seem threatened, and in general, recovery from the effects of surgery take time. However, the immediate adjustment process can set a positive tone for all involved.
Ostomates and caregivers should seek the guidance of professionals for ordering correct supplies; following the correct diet is extremely important; encouraging the patient to regain strength by light exercising, walking or simply moving around is invaluable, as long as there is physician approval.
Diet is extremely important, and many surgeons require no fresh fruits or vegetables be eaten for the first two weeks to a month. This is to allow bowels to rest and prevent blockages. Introducing soups and stews, depending upon the ability for the ostomate to have sodium in their diet, as well as yogurt are all ways in which to insure nutrition. Additionally, pushing fluids will avoid dehydration, as well as salting food, if allowed.
Milestone markers: Ostomate is beginning to develop a heartier appetite; caregiver and ostomate understand the steps involved in the application, fit and ordering of the appliance; ostomate is embracing their previous quality of life; medical community is pleased with physical adjustment; ostomate is feeling comfortable asking for help, and able to show appreciation for that support.
The First Month
Mastering the appliance is a main focus once the ostomate is home and settled, and usually a visiting nurse will manage that education. The family caregiver, or family member involved, is an important emotional backup, so they will want to learn the process, as well. It is recommended to lay out the supplies involved in the appliance process and prepare them for application. Have paper towels and plastic bags for disposal. Protective gloves are discouraged for the patient, but are mandatory for the caregiver’s safety.
Learn the language of ostomy. An example would be is the ostomate wearing a one-piece or two-piece ostomy pouch system? Do they need a skin barrier to prevent leakage around the delicate peristomal skin? How do we prevent skin breakdown? These are all questions about healthcare for the Ostomy Nurse, or visiting nurse, and will impact quality of life. If no nurse is involved, then the surgeon’s office should be contacted.
The first month also revolves around dietary issues. The patient who has had to avoid foods due to illness, etc., may now find their world open to greater choices as time goes on. Chewing food very well will help prevent blockages, and is a must for good healthcare. By and large, there are no forbidden foods, as long as they are tolerated, however, certain foods are to be eaten with care. These lists are available on the outlets mentioned below.
The stoma usually changes size as swelling is reduced over the first month or two, and that will most probably require a smaller size opening for appliances. Consulting the Wound and Ostomy Continence Nurse (WOCN) will help with those changes. Watch out for leakage due to ill-fitting appliances, particularly stoma opening that is too large. That will allow for the leakage to cause peristomal skin breakdown, which will affect the quality of life of the ostomate.
Establishing a routine will be very helpful for both the ostomate and the caregiver. Changing appliances the same times each week, showering at the same time each day, eating well-balanced meals at similar times, exercising and reaching out to an Ostomy Support Group will all go a long way to acceptance and adjustment.
Milestone markers: Ostomate is able to eat more foods, and discuss diet with caregiver; patient and caregiver are interested in joining an Ostomy Support Group; medical community is pleased with physical adjustment; if emotional issues arise, there is conversation between both ostomate and caregiver about sourcing emotional support; both ostomate and caregiver are understanding the language of ostomy.
General adjustment the next few months
Looking back after the first few months will be extremely motivating for most ostomates and caregivers, as the adjustments that are successfully made begin to mount up to an emotional and physical transition never believed possible at the beginning of the process. The learning curve moves quickly from this point on, since as long as the stoma is well-healed and the appliance fits properly, the physical adjustment is relatively complete. The emotional adjustment may be a more fluid one, and having an outlet for discussion, a support group, and of course, a valued family caregiver or family member will all assist in that process. Here is more valuable information about the ostomy process:
Education and appliances
We live in good times for not only patient education. (Contact the United Ostomy Associations of America (UOAA) and www. Ostomy.org with any questions), but the ability to wear the most comfortable and reliable appliances and ostomy bags/pouches. Even those challenged by unique sizes and shapes of stomas can be accommodated with well-fitting systems. Some need to be custom designed, and there are several manufacturers who specialize in these unique needs. Generally, the Wound and Ostomy Continence Nurse (WOC) who sees the patient in the hospital will advise patients if they will need a specialized system, and the Visiting Nurse who visits at home offers hands-on lessons dealing with changing the ostomy bag/pouch and ordering supplies. Those who fit standard sizes and shapes, whether they want to wear a one-piece or two-piece system, will, most likely, be guided by the Visiting Nurse at the beginning, as discussed, and then, as the stoma size changes, new appliances may be ordered, as prescribed by the Ostomy Nurse.
All ostomates will want to carry a “protection bag” with a change of appliance. Some keep a change of clothing, including fresh underwear, paper towels and wipes in the trunk of their car. It is rare to need all of this “protection” but it provides peace of mind and that goes a long way to ease concerns.
Maintaining a journal reflects progress by both ostomate and caregiver
As is any other process, there will be many changes for the ostomate, much dictated by the body’s adjustment. Reflecting back each month will reassure both the ostomate and the caregiver that progress has been made. Keeping a journal is extremely beneficial so that issues that seemed overwhelming at one point, will look more manageable with the passage of time. Family members and family caregivers will need to assure their loved one that they will see them through this process, and the following information will be a true hands-on guide.
Milestone markers: most ostomates will be able to care for their stoma at some point. The caregiver will no longer be as “hands-on” as they were at the beginning; the ostomate will attend social functions, armed with their “protection bag” so if there is leakage, they can change; ostomates and caregivers may go together to Ostomy Support Group meetings; they may also attend conferences where they will meet “their people.”
Ostomy 101 for new caregivers
Let’s break down the process of becoming a caregiver for you. In this section, we’ll provide a brief overview of everything you need to know as a new caregiver. This will make it easier to have your specific questions answered. Each week post-surgery, there will be changes and adaptations, but here are some important facts about ostomy or stoma surgery. Every year, 100,000 people have ostomy surgery, and there are a million Ostomates in the United States. Prior to becoming an ostomate, few know about it, since not only does it involve a private and personal part of our bodies, it is hidden by our clothing, and not at all visible. In fact, unless one wants another to know they have an ostomy, they have no way of knowing. Therefore, a caregiver is as unfamiliar with what is ahead as the patient.
Types of ostomy
There are three main types of life-saving ostomy surgery:
- Colostomy surgery allows stool to leave the body from the colon, through a procedure that places a stoma (opening) on the abdomen.
- Ileostomy surgery, just like colostomy surgery, allows partially formed waste to leave the small intestines via the stoma
- Urostomy surgery allows urine to pass from the kidneys via a stoma (opening) on the abdomen, as well.
As mentioned, today’s well-designed supplies capture stool and urine output effectively, without odor or bulkiness.
Common causes of an ostomy
The causes for an ostomy include colon, rectal and anal, as well as bladder cancer; autoimmune syndromes such as Crohn’s Disease, Ulcerative Colitis and diverticulitis; slow motility issues such as pelvic floor dysfunction, hypoactive and redundant colon; adhesions from abdominal surgery, injury to the colon, small intestine or bladder. Symptoms for these may include bleeding, distention, lack of appetite, intractable pain, vomiting, diarrhea or inability to move one’s bowels.
Since some of these are not comfortably discussed, an open relationship with family members is imperative if changes occur. The caregiver may feel intrusive, but the patient’s health and possibly life, may depend upon openness and honesty.
Ostomies can be planned or happen with immediacy and either way, there is significant emotional, as well as physical upheaval. Shortened hospital stays mean the patient leaves with most questions unanswered, and even if resources are discussed, not fully absorbed. This is the first job of the caregiver, to gain valuable information and have a connection to someone who can be a support once back at home. In addition to what was learned in the hospital, extensive Ostomy support is available from the United Ostomy Associations of America (UOAA) as well www.ostomy.org. Additionally, The Phoenix Magazine is a great resource for information. Family members can help by reading and understanding the basics of ostomy healthcare to assist in quality of life issues.
From awareness of the proper ostomy diet after surgery, to ostomy patient education, and sourcing Ostomy Support Groups, there are many questions and concerns, and caregivers can be very helpful in helping ostomates to find finding ostomy resources, particularly at a time when the patient is frightened and filled with anxiety.
Perhaps never in a relationship is a bond as important as when one is dealing with a health crisis. Ostomy surgery certainly falls into that category, and has major implications on the patient’s ability to feel secure and whole. The primary emotion all Ostomates and caregivers alike seem to feel initially is that of being alone. Many may never have even heard of an ostomy, and now it is taking center stage in their life, bringing major changes both physical and emotional. Fortunately, there is so much information available, including the New Ostomy Patient Guide, as well as The Phoenix Magazine, from the United Ostomy Associations of America (UOAA) that answer most questions. Knowing there is so much information available provides assurance that neither the Ostomate nor the caregiver must navigate all of the unknown waters alone!
How caregivers can help
1. Caregivers can provide emotional support, being open to discuss any and all of the ostomates concerns. Be an active listener and participate in treatments when possible.
2. Help navigate the new ostomy diet, which will change as the ostomate grows stronger and more able to tolerate foods. Additionally, the caregiver can remind the ostomate to chew food very well.
3. Help to protect and clean the stoma, checking to be sure the delicate peristomal skin is intact.
4. Help to change the ostomy bag/pouch as necessary, and encourage the ostomate to do more and more by themselves for greater independence.
5. Remind ostomate to slowly focus on each part of recovery, including mild exercise, socializing, becoming more active and engaged.
6. Join the United Ostomy Associations of America or ask for their New Ostomy Patient Guide and encourage the ostomate to read The Phoenix Magazine for tips and answers to questions.
7. Be aware that the day to day living will be the biggest challenge because it changes. But these changes should, in all probability, be positive, and less and less “hands on” will be necessary as time passes.
8. Life with an ostomy bag/pouch does not mean that clothing has to change, perhaps simply be aware of the need to protect the stoma from zippers and buttons, and wear clothing that is not too tight on the abdomen. Women may want to wear shawls, tunics, ponchos and capes, and layered looks for women, and Untuckit shirts for men. The more comfortable the ostomate is in their ability to “be themselves” the better they will feel.
Tips for caregivers
The ostomate/caregiver team have a great opportunity for them to bond, particularly if the caregiver is a family member or knows the ostomate well. A few tips will be helpful to best support the ostomate in transition:
1. Stay objective: talking about an ostomy can be embarrassing or awkward but it’s best to remain objective and neutral, showing openness to explore finding answers with patient.
2. Do your research: if you’re new to being a caregiver, you’re not alone! The United Ostomy Associations of America is a great resource for helpful information for becoming a better caregiver.
3. Give ostomate the opportunity to vent, lament, grieve. However, if depression, anxiety, sadness, fear, loss of affect or appetite, or inability to socialize seem out of the norm, reach out to professionals.
4. Educate yourself, learn the language of stoma surgery and stoma care, and be prepared to advocate if necessary. The better educated the caregiver, the more the ostomate will be able to rely upon them.
5. Maintain your own good health by sleeping, eating healthy, exercising and taking care of yourself. Two sick people are not better than one.
6. Join an Ostomy Support Group. If you cannot source one, reach out to American Cancer Society or United Ostomy Associations of America or your local hospital. The camaraderie will be as important as the information gleaned. Additionally, it is the place that new and innovative products can be seen.
7. Ask questions in group about pouching systems, travel issues, showering, swimming, exercise, hernia prevention from those in attendance, encouraging the ostomate to join the discussion. Simply hearing from others that life can be what the patient wants, speaks volumes to the new ostomate.
Getting personalized help
The more optimistic and open to these things the ostomate becomes, the more the caregiver can relax and begin to enjoy their time with the person they love. Eventually, the role of the caregiver can become the role of simply spouse, sibling, child, parent or friend. Keeping a journal of fears and concerns provides a means of looking back and seeing the progress both the ostomate and caregiver have made, together. The bond that is created will be stronger than ever imagined, as the ostomate grows stronger, so does the quality of life improve for both!
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