When I had my surgery in December of 2011, I didn’t know what to expect life to be like with an ostomy. Ten days before surgery I went online to look for information about “lifestyle with an ostomy” and I really couldn’t find anything. This is why, just ten days before surgery, I founded a YouTube channel called Ostomystory. I documented my life frequently for two years post-operatively and shared life experiences, thoughts and tips. In the few years after ostomy surgery, I have accomplished and experienced so much. I wanted to share my short-list with you so you know that you really can do anything with an ostomy! What have you accomplished and experienced after ostomy surgery? We would love to know!
Ten Things I’ve Done After Ostomy Surgery
- Traveled to seven different countries and over a dozen different states
Travel has always been one of the things that make me feel most alive. I was so fearful of flying after ostomy surgery, but my parents were so smart and scheduled a short trip from Chicago to Sedona, Arizona only three months after my surgery. This acted like exposure therapy for me. I was immediately exposed to my fear and realized there was nothing to be scared of! I packed twice as many supplies as I would typically need, brought all my medications and a heating pad in my carry-on, and repeated to myself that everything would be fine! The flight went smoothly, and the trip re-instilled my love for exploring new places. If you’re interested in reading more about travel tips, here is a video and article on traveling with an ostomy. - Ran a half-marathon and three different obstacle course races
Another activity I loved was running, but I gave it up after being diagnosed with ulcerative colitis (UC). After surgery I decided I would try to pick it back up again. I ran a half-marathon with Team Challenge, which was a great reintroduction to running. The coach had UC and helped me find solutions for staying hydrated and changing my running posture so that running wouldn’t bother my adhesions. During the training process I realized that I was in the best shape of my life, even with a stoma! - Graduated college
My biggest fear after being diagnosed with ulcerative colitis was being unable to finish school. School has always been something I’ve enjoyed, and I knew that being a psychologist was my end goal. It has been such an important part of my identity for my whole life. There were many hospitalizations during my semesters, a few medical withdrawals from classes, and countless tears. I remember my college boyfriend pulling me on his longboard to class for two months because it hurt so much to walk (later we discovered I had a pelvic/peritoneal inclusion cyst). With a lot of help from friends, family, caring professors, the disabilities office and personal tenacity (or stubbornness) I graduated Cum Laude in nine semesters. - Moved cross-country… twice
Three years after ostomy surgery, I moved from Chicago to Los Angeles for a job – this job. A job that allowed me to educate others about life after surgery and advocate for a happy, healthy and full life with an ostomy. Starting over, being away from my amazing support network, making new friends and finding new doctors and specialists was so intimidating – but after the fact, I had so much confidence that I could handle taking care of myself and everything that life could throw my way. I found my “script” for telling new people about my ostomy and loved being a Californian for two years. I then headed back to Chicago to start graduate school. Once again, I’m having to readjust to a new lifestyle, but it has been such a positive experience. - Backpacked the Canadian Rockies and hiked the Colorado Rockies
I had backpacked a few times before my diagnosis, and had really loved being so far out in nature – far enough that I couldn’t see any signs of civilization. It is so incredibly refreshing and calming to me. I thought it would be difficult with all my ostomy supplies and pills, but it turned out it was much easier than having to go to the bathroom in the woods the “normal” way. Since my first backpacking trip with my ostomy, I’ve considered it an advantage! - Enjoyed relationships and had no issues with being intimate
I’ve had a few wonderful and accepting relationships. I’ve never had any issues with discussing my surgery and ostomy with a potential love interest, nor have I had issues with intimacy. I’ve always approached discussing my ostomy with honesty, openness, and confidence, putting out the vibe that it’s not a big deal and my partner has picked up on that cue. The more positive and confident you can be about your ostomy, the better! If you’re interested in learning more about intimacy with an ostomy, click here. - Formed a wonderful, amazing support system
Similar to explaining your ostomy to a potential love interest, if you choose to tell your friends and family about it, the more positive (but still realistic) you can be about your situation and the more open your friends and family will be. I’ve been so lucky to have my friends and family be supportive. I always start by talking about how dangerously sick I was and then move on by saying “in order to save my life, I had to get my colon taken out.” I then explain more about the surgery and how it affects me. - Carried out a normal life/work/exercise/social schedule
This sounds like a small accomplishment, but compared to my life before getting ostomy surgery, this is a huge deal to me! I was unable to work part time, stay in classes, see friends or even leave the house on my “bad” days. My ostomy has allowed me to live the life I’ve always wanted to live. - Spent hours in the Pacific Ocean while boogie boarding
While I lived in California I picked up boogie boarding as a hobby. I spent hours in the ocean, on my belly. Read different products that make being active easier with an ostomy here. - Gone to professional sports games and concerts
This also may seem small, but before ostomy surgery this was such a source of anxiety. Going anywhere where bathrooms weren’t immediately accessible was such a scary idea. Now I go anywhere, whenever I want!
What life activities have you enjoyed after surgery? Feel free to share in the comments below.
For more information, see related ostomy support and inspirational articles and resources here:
- Famous People with Ostomies
- Video: Body Image With an Ostomy
- Support Network – Who Should be in Yours?
- Telling Someone You Have an Ostomy
- OstomyLife Community Spotlight | Eric P. | Vegan Ostomy
Shield HealthCare | Stronger with Shield
What is one thing you wish someone had told you about having an ostomy before you got an ostomy or when you were new to having an ostomy?
Wow that neat. I’ve have had my ostomy for 8 1/2 months now. I’m still learning things. But am very greatful for my life
I’m now celebrating my 50th anniversary of living with Crohns and an ileostomy. I was married for 40 yrs, raised a family and I now have grandkids and 1 great grandson. I’ve worked all my life played sports, swam, ridden roller coasters since my operation. You just can’t let it hold you back. I was 18 when I received my ostomy back in 1968. I hope I was of some help to you.
I’m going to have my colon removed soon
I worry little about my coming new lifestyle
Please advise me if I’ll be fine and if I have
To keep the bag forever or temporary
Thank you
Moulay
Hi Moulay. Some worry is totally normal. It’s normal to worry about something when you don’t know what it’s going to be like on the other side, and no one can predict how it will be for you, since everyone’s surgery and recovery are different. But you will be able to worry less by being prepared for what is to come. Keep checking out our community, search for questions you may have online, read people’s accounts of their surgery and recovery. You will be fine, but things may be different. Laura talks about that in her video about things she wishes she knew before her osotmy surgery. As for having to wear a pouch for a temporary period of time for the rest of your life, that is less easy to predict. It seems the the majority of ostomy surgeries are able to be reversed these days as medical technology advances. But depending on the reason for your surgery, and any complications you may have, that may not be an option for you. Some people who do have the option to have the ostomy reversed decided not to do so, for a variety of reasons. Here is a story of someone getting a reversal and (so far) being pretty happy with it. Whatever you choose to do, we wish you luck! Please let us know if you have any other questions! -Aimee, Shield HealthCare
Hello: It was Sept. 1986 when I got my ostomy, and July 1997 when I lost over 50 % of my small intestine due to adheasions(sp). Since then my stool is quite fluid and my ostomy pouches only last about two-three days before I have to change. Also food goes through me in record time so I have to look forward to the next available rest room in advance. Not a big problem when at home but can be some what of a problem when out and about. Do many others with this type of situation have the same issues? Any tips on living with this situation? Thanks in advance for any consideration.
Hello all;
I was discharged from the USMC in 1978 after my diagnose of ulcerative colitis ended my career before it started. I have had an ileostomy since 1980 and have had no difficulties adapting. I work more than full time, and have been a Registered Nurse for over 30 years.
I have been married more than once, and never was the ostomy an issue. I fully expect to live a long and prosperous life, and encourage everyone to do the same. As I often explain; All of my troubles are behind me….
The most important thing I’ve done is make sure the ostomate (Nursing home) residents Have the best products for their situation. I’ve helped 6 people and educated hundreds
Glad I found this site. 8 months post surgery. The surgery was emergency, and initially, the ostomy was overwhelming. I had not only the ostomy with which to contend, but a large abdominal wound that had to heal with a wound VAC for 42 days. I was angry, and felt like my life was over.
But my sense of humor took over. I approached it as just one more thing in life. My bedroom looked like a MASH unit for weeks because of all of the medical equipment for the abdominal wound. As I healed, I made a special place for the ostomy supplies, and engaged with the wonderful ostomy nurse who brought me along. Moreover, fate placed me in contact with nurse friend I had not seen in years. She has had an ileostomy for 13 years. She too has a great sense of humor, and has been a source of strength.
I am to visit the surgeon to discuss a possible reversal. I have weighed the pros and cons. I am not going to do it. Some may say why! Well, I have pain pain free for 8 months. I can drink coffee again. I don’t have to worry about finding a restroom or having to use a gross one,I am in excellent health and almost weigh what my license says! Surgery would require another incision, possible healing with the VAC, and most concerning, the possibility that the reconnect could split open. There are no guarantees. Additionally, there could be adult diapers, bowel obstruction, diarrhea, and more pain.
So, I am in this for the long haul. I have learned so much from sites like this, including that each of us discovers things which benefit our particular situation.
I’ve had a BCIR (Barrett Continent Intestinal Reservoir) since 1982, I am now 67. Four things I’ve done in my life after an ileostomy: raced power boats, scuba dived, sky dived, got married. I eat what I like, and nothing I don’t. Having surgery at 28 saved my life after 10 years of ulcerative colitis.
I’ve had my ileostomy for six years after a nearly fatal encounter with Toxic Mega-Colon. It took about six months for me to come to terms with my little friend and his pouches. Now, I wouldn’t change anything. Due to the nature of the surgery and the placement of my stoma, I am unable to button my trousers or wear a belt. I wear suspenders (braces for those across the pond) and cover up with a vest. Very stylish! Comfortable also.
One of the major benefits is the ability to consume all manner of hot peppers and sauces with no after effects.
Over the past three years my wife, grandson and I gutted and re-built our basement including a new bathroom, copper pipes and water heater.
One can pretty much do most things that were done before. Don’t forget to have fun!