Feeling the Ostomy Blues and Seeking Support

I had my surgery on April 1, 2016, his name is Tommy. I have made peace with Tommy, I think. Changing, maintaining, living with, all is second nature. I wear a wrap, which I call my bra, and off I go. Rarely do I feel that Tommy makes an entrance before I do. Even my boyfriend forgets that I have it. I've even gotten used to the occasional 'ostomy burp'. I call it the trump solo.

The only thing that I still cannot get used to is the 'blues'. My primary doctor says that it's normal. My colorectal doctor says it's normal. The only one that doesn't think it's normal is me. I feel so alone at times. I did go to an ostomy support group, the issue is that it was mostly older folks who lived at a retirement center. Their daily versus my daily were very different. When I was asked to share about me and my day, there wasn't anyone there who could relate.

I haven't had anyone to share with. I need someone to share with. Not just online but in person. I need other ostomates to spend time with.

Where are you?!?!

Hello Limesican... I must say, you wrote a very touching post. Though I'm not in your area, I truly wish I was. Simply because sometimes, I feel that way myself. I'm sure someone will chime in. I had to tell you! I'm sure someone is near you, my fellow ostomate. Thanks for sharing!

Angelicamarie

Hello Lilmesican. I don't live in California but, as part of the online community, I can attest to the fact that you are not alone in having the feelings you so ably describe. Now! as for finding someone near you. I just went into the 'SEARCH MEMBERS'  section under 'General Search' (who I think was promoted about the time of the civil war). I only typed in 'CALIFORNIA' and came across 19 pages of 10 people - i.e. 190 people all living in the state. (and hopefully not all caught up in the devasting fires.) 

Many of these people will not have seen your post but if there are any who live close to you I feel sure that if you contact them directly, they will be only too pleased to share their and your experiences first-hand.

I hope you get lots of responses to this post as well.

Best wishes

Bill 

I still haven't found someone near, but a fellow is coming to San Diego, about an hour from me, and we are getting together!

Thank you, Bill!!!

Airport Security Tips Living with an Ostomy with April | Hollister

I have had my colostomy for 8 months and have a horrible time with the blues and feeling isolated. There is no in-person support group in my area. I rely on this site for a sense of identity. It is wonderful! I also try to keep busy and distracted - I exercise 2-4 times a week, play in my art studio, read, hang out with friends and family. And I still get the blues. Plus, since I am fairly new at this, I am always frightened of something going wrong. But so far, so good. Hang in there as best you can and use this site for comfort and companionship when you feel alone. Sometimes, just posting about your feelings makes a person feel better. Thanks for sharing.

Well, I've had my ostomy now since March 27th. I now have a Teletubby butt. I had an APR surgery and the ostomy. I can't say I get blue because I'm so grateful to be out of pain since the cancer is gone.

The cancer was in my lymph nodes but only in two nodes. This, of course, ups my chances of recurrence. I am grateful to be here, but I am 61 years old. I think if I were as young as some of you, I too would be blue on occasion. Please don't let this overtake you. You're still young, and thank God there are treatments that make life without pain possible.

It's okay to feel blue because sometimes it just happens, but don't let it overtake you, please. There is so much to do and see and experience when you're young. Seize each day and live it to the fullest!

To Lilmesican....and all

Please don't discount all us "old folks." My name is Marsha, and I've had my ileostomy for over 50 years, since I was a child of 15...

The ostomy was and continues to be my badge of survival... It allowed me to get back to school, and back to my real life. It took some time and adjustments, but I was determined to do what my friends were doing. Back then it was the beach, swimming, amusement parks, horseback riding, and going on hikes. If they could pee in the woods, so could I. And when I had to empty, I dug a hole, and let the poop flow...

Not everyone is that adventurous...but I had 4 years (of being sick and in hospitals) to know how I wanted to live the rest of my life...if/when I got well. I was lucky that the NY Metro area had an active ostomy group, and some of us "younger teens/20's" broke away and started our own social/ostomy group.

Back then, there were no stoma therapists, so ostomates visited newbies.

I dated, married, had two children (who are now grown, and raising kids of their own), and divorced about 25 years ago. Although I was still searching for "Mr Right," I focused on doing all the traveling I'd dreamed about. Saw most of the US in the co-pilot seat of a single-engine plane... (I was in my 50's already) cruised the Caribbean, multiple times, toured Europe...and then the more exotic locations of China, Japan, Israel, and Australia 7x to visit my son and his family. Highlights include snorkeling on the Great Barrier Reef.

Do I get the blues... Of course, I do. Somewhat more now, since I'm older, and less able to travel the way I used to. But some "good things" don't last forever... Old saying...is that we plan, God laughs. I was that "poor sick kid" from Brooklyn, who had hopes and dreams... Everything didn't turn out the way I hoped...but life is good, much like a roller coaster, with the ups and downs... Enjoy the good times, and you'll manage through the "blues." Best of luck to you. Marsha

Hi there, if you want to talk... I have had my smile since April 2016. Life has changed, but still goes on...

I also am not in your area, but have you looked into support groups offered through a medical supply store in your area? I found a group through the ET nurse the medical supply company has on staff. If you're a regular customer, you are also entitled to free appointments with the ET Nurse for any difficulties you may be experiencing. It also offers free samples of products to try when trying to find products that work for you.

I am in Canada, but the group I know is also in the USA and also has awesome magazines with your membership. My mind is drawing a blank at the moment as to the name. I will find out and let you know. It also lists local groups.

Hi, howdy.

I know what you mean, I think. I had a very hard time talking to anyone about my many surgeries, and since my divorce, I have had no intimate partner. It isn't easy moving on, and I am beginning to wonder if I will ever share my life again. So, I get blue and even shed a tear or two. One day at a time is about all that keeps my head up sometimes.

I have been a social media person for a long time and learned that sometimes sharing makes it better. It worked this time, again. 

Thank you for reaching out, I really appreciate it. 

How's it going today?

Day seized and I'm feeling better. I suffer from anxiety and depression as well, sometimes it all comes together at once.

I'm good today, so I'm enjoying it.

Hello again Lilmesican. Anxiety is a milder expression of 'fear' and, along with 'depression', are 'emotions'. In my theory, 'emotions' are equivalent to 'instincts', which are part of the primitive survival strategy for all living creatures. This is why we have such difficulty in bringing them under logical control. The problem for people who 'suffer' with their emotions, is that they often have not yet 'learned' the skills in how to control and manage their instincts/ emotions in ways that are positive rather than negative for them. These skills are not diifficult to learn as they are usually aquired before the age of 6/7 years. Unfortunately, if one does not learn and internalise them at that age, then they are often replaced with less than helpful strategies, which are practiced throughout life and never really controlled satisfactorily. Habits which take a lifetime to evolve are often hard to break, but it is not impossible and I feel sure that 'anyone' can break free of this type of 'suffering' once they know what causes it and how they can do something to control it. If you are interested in a longer discussion on this subject, there was a thread developed in my blog entitled 'GRATITUDE', in which we discussed this subject in much more depth.

Best Wishes

Bil  

I think you would have got on better with this ostomy group and a regular counselor or believe it or not, a grief group.  Sometimes we fail to remember that we lost a part of us and we need to give ourselves permission to grieve.  When I finally stopped asking why and had a good cry, it was easier for me to get a handle on what had happened.  My counselor has really helped with the PTSD and my recent separation from my spouse of 13 years.  I am getting used to living alone again and took on a part time job, 15 to 20 hours a week as a Medical Escort and Community Integration  worker for disabled persons.  I enjoy taking some of the sadness and frustrations I have with my situation and focusing on helping other people with their lives so they can have some quality of life.  I have wonderful clients with unique personalities who are really fun to be with and I love helping them.  Pretty soon the day is over and I realize I haven't thought about New Maxine all day!!  God wanted me here for a reason.  That is why He saved me by forgiving me of my sins and then 2 more times through emergency surgery.  When you feel blue, get outside in the fresh air and sunlight and if you aren't working, volunteer or get a small job where you can help others.  It really works to help you feel better.  Good luck! 🤗 Pamela