Ostomy surgery may be the biggest emotional flood a person has ever experienced. From the initial emotional downpour when you first realize you need an ostomy to the feeling of reality setting in and on through the never ending emotional roller coaster an ostomate rides. But you are not alone. Your emotions with an ostomy are all valid, and maybe other people feel the way you feel.
For a person to require ostomy surgery, that person is likely very ill, or very hurt, and their illness or injury takes up most of their mental capacity. But after surgery, when a person starts feeling better, the emotional trauma of that sick period is able to set in and it is normal to feel a loss of control over ones life.
After surgery, an ostomate may also start to feel a sense of disappointment, because their ostomy didn’t “cure” them. In addition to this realization, an ostomy is a constant reminder that you are sick. And it isn’t something you can ignore for long, because it needs near-constant awareness. On top of it all, you have more anxiety than before about things like intimacy and body image.
People may start to feel misunderstood on many levels: foods that are considered healthy may actually be dangerous for that individual and they may feel misunderstood because they don’t look sick. Not feeling validated, or having a huge life struggle go unrecognized can make you feel alone and under-appreciated. Having to think about things, like supply availability just to function like others do with ease, can take a toll on mentality.
So what do you do? Laura Cox and our other OstomyLife contributors have created a series of articles and videos to discuss their personal struggles with these topics and some suggestions for accepting them. Laura has also written a list of coping mechanisms that one can practice to help with tough times.
- Mental Health with an Ostomy
- Video: Body Image with an Ostomy
- Taking a Sick Day When Chronically Ill
- Living with Invisible Illness | A Personal Story
- Video: Things That Still Bother Me Since Getting Ostomy Surgery – And How I Resolve Them
- Intimacy with an Ostomy
- Bad Day Coping Mechanisms
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My 89-year-old mother loves to swim but she has found that the pouch fills with water when she gets into the pool. What can we do to fix this?
I was ready ! I suffered for 17 years with many surgeries from the wrong doctor that knew nothing of Crohn’s disease. It took from 1980 till 1987 to get my condition under control and over 40 hours of surgery.
My stoma or mucous fistula have a tendency to bleed due to chemo. What can I do to solve this?
Hi Carole. Thank you for your question. Hmm. Well, our first recommendation would be to see your doctor, or oncologist, or WOC Nurse. Beyond that, we’d have to know how much bleeding there is. All stomas bleed a little when cleaned. From our article “How To Clean the Skin Around the Stoma“: “Sometimes you may see a small amount of blood on your cloth. The stoma tissue contains small blood vessels and may bleed a small amount when cleaned. Any bleeding that does not stop should be reported to your health care provider. The stoma has no nerve endings, so you are not able to feel if you are rubbing too hard. For this reason, use a gentle touch when cleaning around the stoma and do not scrub.” However, if there is more than a little bleeding, that is a problem. Keep in mind, though, that the bleeding may not be from your chemo treatment – ill-fitting appliances can also cause bleeding by putting too much pressure on the stoma. If you’re pretty certain that the bleeding is being caused by your chemo treatment, that’s definitely a question for your healthcare providers. We hope we’ve been able to help a little. Please let us know if you have any other questions, and best of luck. -Aimee, Shield HealthCare
There are just some things in life that cannot be explained. Having an ostomy made me feel like a loser…My poor grandchildren could no longer spontaneously hug me, or cuddle up to read a book for fear of me leaking on them. I had my reversal over a year ago, I had lost quite a chunk of colon…thank you radiation. I STILL feel like I need to be near a bathroom…I resent the activities that I should be doing because I still have no complete control, and I have to wewr the dreaded “adult” undies in case of accidents…I feel like my hubby and I should be going out and doing fun things, but I’m too afraid of having accidents…I cry daily…sometimes 3 or 4 times, and I’m even more sensitive than I used to be..My limitations are keeping me and my family from doing so many things we used to do..People say…but you’re alive!…Yes..I guess so, but not fully…So, yes…the emotional part of all of this is horrid…it could be much worse, and I know that…I just can’t always shake the resentment…Many hugs and much love…
I’m living with an ostomy bag I don’t want to get depressed I pray everyday and cry you tell me this is temporary but I don’t believe it I can’t get used to this new life with a leaking bag
Hi Caroline. We’re sorry to hear you’re having a hard time adjusting to your new life with a stoma. You may benefit from check out this post on our OstomyLife Facebook page where a lot of the comments discuss having a really hard time at first before adjusting. Your bag also shouldn’t be leaking, though we know that’s hard to get under control, especially at the beginning. We just posted an article called “Ostomy Pouch Leaks” that you may find helpful. Best of luck and please let us know how we can help. -Aimee, Shield HealthCare