Ostomy Surgery Saved Matthew Perry’s Life. It’s Time to Stop the Stigmas.

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Excerpts from Matthew Perry’s new memoir show that even TV stars are vulnerable to poor ostomy care and stigmas UOAA is working to erase.

By James Murray, UOAA President

In a preview of his new memoir Friends star Matthew Perry reveals to People that in 2019 his colon burst from opioid abuse and that he spent two weeks in a coma before waking up unaware that he had emergency ostomy surgery to save his life.

He reveals that ‘It was pretty hellish having one because they break all the time’ which as President of United Ostomy Associations of America (UOAA) shows me that even a Hollywood star is susceptible to poor quality of care and the ostomy stigmas our organization is fighting to end.

I had lifesaving ostomy surgery as a result of colon cancer and I am among the 725,000 to 1 million people in the United States we estimate are living with an ostomy or continent diversion. Many of us live healthy and active lives thanks to follow-up care by certified ostomy nurses, education, emotional support, and the fact that a properly fitted ostomy pouch should not break, smell or restrict your desired lifestyle.

The book also reveals that Perry’s ostomy was temporary and that his therapist said ‘The next time you think about taking OxyContin, just think about having a colostomy bag for the rest of your life.’ Perry says this was the catalyst for wanting to break his long pattern of addiction.

While it’s wonderful that Perry has fought to end his addiction, these words sting for those of us who deal with the consequences of ostomy stigmas in our society. We wonder if Perry would have come to see the ostomy differently if given the chance to attend an ostomy support group or talk with another person living with an ostomy during his 9-month recovery. Did he receive information about organizations that support ostomy patients prior to discharge? Research shows that these and other UOAA standards of care can make all the difference in a patient’s outcome.

Despite the fact that ostomy surgery saves or improves lives, there are still people who believe that death is a better choice than having this surgical procedure. People of all ages struggle with body image issues and acceptance in life with an ostomy and perpetrating these stigmas can leave deep scars.

Perry also mentions looking at the scars from his 14 abdominal surgeries as motivation for ending a cycle of addiction. Perry and those interviewing him are rightly celebrating and supporting addiction recovery efforts. We ask that they also give a moment to help raise positive ostomy awareness, and share our resources available to all those in need.

James Murray is President of United Ostomy Associations of America Inc. (UOAA) a national 501(c)(3) nonprofit organization that promotes quality of life for people with ostomies and continent diversions through information, support, advocacy and collaboration. Educational resources, advocacy tools, support groups and more can be found at www.ostomy.org)

Donate today to help the next ostomate in need. 

67 replies
  1. Angela Tucker
    Angela Tucker says:

    We are in England but the stigma of having a stoma is just as negative here, and when you have IBD such as Crohn’s like my daughter and wake up from life saving surgery with a permanent stoma at 16 due to a toxic mega colon, not opioid abuse like Matthew Perry, but a lifelong debilitating illness you made no poor choices to deserve, at an age for girls when body image is so obsessively portrayed in social media as having to be “ perfect “ or you are ugly and worthless, the effect is devastating. 7 years later my beautiful brave girl has travelled abroad and doesn’t let her stoma hold her back, but she hates her altered body with a stoma and 4 years of therapy will never change that sadly. I tell her that nobody knows unless she wants them to that she has s stoma but she says that’s not the point…. She knows, and she has to deal with 3 am bag leaks and the knowledge that if they cured Crohn’s tomorrow it doesn’t matter because she will always have to wear a waste bag. Heartbreaking.

    Reply
    • Peter
      Peter says:

      Hi everyone. I suffered with ulcerative colitis fron the age of 5. Finally the professor of colorectal that was treating me that asked me not my parents if I wanted to slowly slip away or have the ileostomy for the rest of my life from aged 12. I took the surgery option. Now 45 years later I am still in good health. My ileostomy has become ‘the norm’ and I thank every day for my life changing surgery.

      Reply
      • Deborah M Billing
        Deborah M Billing says:

        I too have Crohn’s disease which was diagnosed 32 years ago. They think I developed it as a teenager living in a toxic home life. I had the same surgery as you and with the help of Cimzia and now Humeria I have been in remission for 12 years. I only wished they had done the surgery sooner because the small and large intestines that they removed was so ulcerated that I don’t know how any food made it’s way out of my intestines. I’m so glad my Crohn’s has not been my main health issue, but I am one of those who once you get one autoimmune disease you start piling them up. I currently suffer from 3 other autoimmune diseases. What I have learned is stress is your biggest enemy. Also, if you exercise regularly, eat healthy and get adequate rest, you have a better chance of not collecting so many diseases. Good luck to everyone out there suffering lifetime health issues. All I can say is I am alive and have been with my husband for 32 years and we have a incredible daughter. My life is better than the one I was raised it. Good luck

        Reply
    • Edward
      Edward says:

      I am sorry to hear about your young, beautiful daughter having to face that type of surgery. It is very hard, i know this because i my late 50s it happened to me due to Crohn’s disease that caused an obstruction in my small bowel. So, i had an ileostomy. But it was only for 9 months. It’s such a shock initially and i was an older person when it happened to me and i knew there would be a reversal, but it was still very hard to accept. You daughter is a strong person and you must be very proud of her. I wish you both all the best and hope she continues her path to not let it stop her in pursuing all her dreams and happiness in life…

      Reply
    • Becca
      Becca says:

      Addiction is a disease, not merely a poor choice or moral failing! No one wakes up one day and says “today I want to be and addict”

      Reply
    • Sara Wilds
      Sara Wilds says:

      I feel very sorry for your beautiful daughter having to live with an ostomy for her lifetime. I awoke from ovarian cancer exploratory surgery with a colostomy and felt much like your daughter did. I thought “I Couldn’t live like that ” but have adapted while still despising the stoma. But I’m a middle-aged woman and it’s much more difficult for a young person to deal with the stigma than myself. I found it helpful to join a couple support groups on Facebook and would highly encourage your dear daughter to do so too. Please remind her that if a person can’t look beyond the stoma and inside the person’s soul and love her to the moon and back then they are not the quality person to be spend your time on. God bless your daughter and your family.

      Reply
    • Jai
      Jai says:

      I am lucky I don’t have an ileostomy. But suffer from wanting to be colostomy free. I had sigmoid colon tumor, I weighed too much p, and lost some weight while having chemo infusion and taking chemo pills. I am left with embarrassing issues, which can be moderately controlled by eatng food that don’t head better nutritional value and weight gain, I have permanent cold sensitivity to my hands and feet more to my right side. I have no control of gas, or bowel movements. Which leaves me not wanting to socialize. It has been four years, and have a Parastomal Hernia. I have more issues with arthritis which I attribute to the chemo therapy. It is harder to draw my blood, because of chemotherapy. Oh but I am lucky to be alive if this is living. Nobody can tell me not to be embarrassed. You, go to a neighbors house, then all of a sudden you realize, the awful smell which is making you hold back a gag, is actually coming from ME. I leave knowing they smell it. Go home clean myself up. Sit down, and think what hole can I crawl into. Work and family holidays are uncomfortable. I’ve been through many supply changes. In need of more bags then aloud by insurance coverage. Took they provider ( employees had no idea how to request an overage of 10 drainable bags. And don’t let the. Lie to you about how easy it is to drain and clean. IT STILL SMELLS. When you have diarrhea and try to empty the bag into a toilet try cleaning it when your not home. Well, won’t go into details.
      No reversal for me. Nobody, can take that part of me that won’t let me just live with it as that’s ok and just so happy to be alive.

      Reply
  2. eugenia mangel
    eugenia mangel says:

    It’s a shame that Matthew Perry’s colostomy is such a negative focus in his recovery story. The colostomy surgery saved his life and he would have died without it. Many people have ostomies for various reasons. They are frequently referred to as life savers and can be a very positive life situations for those who are amazing ill with their sick intestines, or would otherwise die from instances such as a gunshot wound or cancerous growth. To focus on the negativity does a disservice to those who have stomas and live perfectly healthy happy and fulfilling lives. Ostomy bags don’t “break all the time,” as mentioned in his article. As an ostomy care nurse I hope that anyone who is “suffering” with their stoma reaches out to professionals who are happy to provide assistance.

    Reply
    • george salamy
      george salamy says:

      I totally agree. I’ve had an ileostomy for over 40 years and maybe I’ve had a leak 5 times. The surgery saved my life. These negative comments in Perry’s book is inappropriate and very poor journalism. The United OSTOMY Associations of Americas tries to dispel these negative attitudes. Journalists should do proper research so they positively impact readers rather than sell copies. OSTOMY surgery is life saving and millions live very productive lives.

      Reply
      • Patricia
        Patricia says:

        My husband had colorectal cancer and had a temporary ileostomy. We named his stoma Fritzy and I loved him. He was my boyfriend. Smile. I think life was easier for my husband with Fritzy because since his reversal his frequent bathroom visits are inconvenient making it difficult to plan outings. He had a stoma belt that made it easy when we were intimate. No complaints from me and I am 14 years younger than my husband!

        Reply
      • Elizabeth
        Elizabeth says:

        You are truly BLESSED and I thank God your experience has been smooth. I had an ileostomy for 5 years, which would not stay on because my surgeon did such a poor job (and has since lost his license to practice). The site was irregular in many ways, and the appliance came loose almost daily, sometimes more than once in day. It came off in a shopping mall when I was Christmas shopping, and you can’t imagine how cruel people can be. The output was like battery acid and the smell was…?!?!?! It’s been 10 years since I was resected and my abdomen is still scarred from the acid burns. The emotional scars are worse, but that is partially because mine herniated between the layers of my abdominal muscles, my surgeon called me hysterical because I “claimed” to be in pain. I ended up losing feet of upper and lower intestine, along with my cecum, because the hernia which he said I didn’t have gangretized and almost killed me. The entire thing was a nightmare, from beginning to end, and now although resected I experience chronic digestive issues. When I see someone with an ostomy now, I want to throw my arms around them and give them a huge hug.

        Reply
    • Martha
      Martha says:

      I have an ostomy bag from bladder cancer, it saved my life. My ostomy nurses are angels from heaven. They are the reason I have never had a bag break. In 2 years no leaks.

      Reply
    • JD
      JD says:

      There’s no stigma attached to Perry’s name or anyone else’s name. Slapping a # in front of a word, or any ridiculous colored ribbon doesn’t do anything. Other people’s opinions are just that, fact is only weak minded people care what others think or say.

      Reply
      • Cath
        Cath says:

        JD, Humans have feelings, we are hardwired this way. I’m a new ostomate, and even though I’m in my 60’s, it’s a very emotional time. For a child or teen, I can only imagine how difficult it would be.
        I practice positive self-talk every single time I deal with my ostomy bag, reminding myself I can now go on long walks, shop and dine out without always worrying about where the nearest toilet is, etc. That and my husband’s staunch support gets me through the hard times.
        I’ve been to one support group meeting, and can’t say enough great things about how willing other ostomates are to share tips and humor about living with ostomy bags. We are survivors!

        Reply
  3. VINCENT FAIOLA
    VINCENT FAIOLA says:

    It is shocking how many clinicians and hospitals fail to enroll their ostomates in the readily available manufacturer support programs. The Data I is clear on how these help. Having lived in la- home health agencies don’t staff wocns due to the limited travel area these nurse cover- making it even more imperative ostomates are enrolled in support programs.

    Reply
    • Bret Cromer
      Bret Cromer says:

      Well said Vince. The support group set me up for success when I attended for the first time at age 16. If every patient would attend a support group, their quality of life would be impacted positively.

      Reply
    • Suzy
      Suzy says:

      Support, education and proper aftercare are essential in learning to navigate a new life with an ostomy. It truly is a life saving event for many of us. I think it is important to share all the resources available to get the support that can truly impact the quality of life with an ostomy. Support groups are a fantastic way to connect with others and learn so much.

      Reply
  4. John Wynne
    John Wynne says:

    I was gifted with an ileostomy late May 2018 after sutures from an earlier resection failed. Because half of my colon was removed to clear sepsis my GI tract is permanently herniated and my stoma reversal would be, in my case, fatal. My abdomen is hideous as it was mutilated taking 2.5 years to heal and, yes, I was in denial for a good while after I woke up seeing the pouch in place. I own this and being recently widowed, my self image and confidence are not that great due to my appearance. That’s the stigma I face and it’s self imposed more than anything else.

    Reply
    • Brandy
      Brandy says:

      Thank you for saying gifted. I feel the same way. I’ve only had mine for a month, so there are still lots of bag/supply issues. Finding a good Ostomy nurse in Iowa is apparently going to be harder than I’d hoped. However, I could be dead. I’m grateful and blessed to have had this surgery. It was an emergency and I had no choice. I woke up with a bag. And a 7” incision that had to be cut through again 6 days later, also an emergency. The wounds are still open. But after the scarring is finished, I’m guna have one helluva Frankenstein tattoo. 😁 I do feel like this was a gift and I am happy to have it.

      Reply
  5. Mary Martinez
    Mary Martinez says:

    I remember a horrible incident in London where an athlete was not allow access to a bathroom so he could attend to his ostomy and had a horrible accident. I hope things have gotten better in that regard. It’s not much better in the states. I had life saving surgery in 2013 and I was not aware of the stereotypes and prejudice involved until I experienced it myself. Unfortunately, I got the worst of it from the ostomy community. I tried to make connections with others but found that people were themselves very negative. I tried to post positive things about adjusting to my new life but was greeted with horribly insensitive comments. I left those communities but felt very alone and all I could do was just to be my own support system. So in a way we can be our own worst enemies and until we let go of our own negative attitudes and associations we can’t expect anyone else new to ostomies to feel ok about it. I had a rough start but once I found an appliance that worked with my anatomy it was fine. I was able to find a way to do most things but somewhat differently. I read articles and watched videos to get advice and recommendations. The important part was to not see my ostomy as an impairment and as a gift that allowed me to survive and heal from a serious infection and a fistula. I was eventually eligible for a reversal but I was not against having the ostomy stay permanently. Maybe it was easier for me because I was born with other health issues and disabilities. The one thing I learned is that only I could control how I felt about my ostomy. I chose to stay positive and not give into self-pity. Perry saw it as a punishment for addiction and was fighting against having to use appliances and so it was a negative experience for him. He’s not wrong in talking about his feelings and experiences but no one should assume that all ostomy users are miserable. There are challenges with any medical condition but anything can be dealt with if we try to see it as something we can adapt to and not as a challenge we have fight against and not accept.

    Reply
  6. Jamie Lewis
    Jamie Lewis says:

    Boy where do I beginning.
    I had two baby’s 10 months to the date. At that time I was 23,, , short of it, had a to young of a marriage,, he was not done partying. bad marriage,, stress to the max cause I also worked as a hairdresser. Which I loved.. two months after my second child, is when I went down, real quick, went to 4 clinic, all saying stomc problems..my father drove me to kc medical in Wichita were they did a live scop on me ,who’s been bleeding now out of my !@# for at least 3 week…
    Then one more Dr. I was sent to…dr.watson. and his partner dr.beech where they both diagnose me with cronc cron and active …
    ..still had issues but not to bad.. then 3 years after I was in a car wreck where the seat belt cut everything inside in half.. I woke up after a couple of day with the ostomy,, hated it.. 10 more surgery s
    And now have an illeostomy. .
    Iam just happy ,,that iam here…no wo me. I have my pitty party’s, yes but they don’t weigh out be living life at 59. When I was 27 at the time of accident. I wasn’t supposed to make it to here… thank you Mathew, for bring this to attention.. and for friends

    Reply
  7. Jude
    Jude says:

    My ostomy gave me my life back after 7 years of suffering with severe Ulcerative Colitis. I don’t hide the fact that I have an ostomy, but I don’t broadcast it either.
    How we deal with it is a very personal choice because we are unique individuals with different needs and abilities. To some having an ostomy may seem like a failure due to their circumstances, they have my sympathy. To those who are able to go public to promote acceptance and awareness, they have my gratitude.

    Reply
  8. Paula Jarrett
    Paula Jarrett says:

    I’m approaching the 20 yr bday of my ileostomy. It was really rough at first, n this ostomy controlled my activities. Once after my skin healed and found a great wafer/pouch, and I took charge. I still have leakages, but it’s a small price to pay for having my life. I have Crohn’s n I’m on my third site. I’ve had a herniated bowel which was site 2; about 8 months later, I had a bowel obstruction, site #3. There definitely is a need for education for those that don’t understand why it might take us a little longer in the restroom. So Nov 25 is my stoma’s bday( my original site). It’s very manageable now. I don’t use any products now at all. I’m very open about it.

    Reply
  9. Paul h. Giersch
    Paul h. Giersch says:

    I have a ostomy due too cancer and it bothers me but I also have too have a little humor about it I’m still alive and save on toilet paper and no more skid marks in my drawers

    Reply
  10. Rose Callies
    Rose Callies says:

    I am a retired nurse of 46 years. I had taken care of Many ostomy patients and had many that never accepted their condition of having a stoma.
    Then before I retired I was diagnosed with Relapsing MS. This shut down my colon. I looked like I was 9 months pregnant. I lost about 30 pounds and no one here in Memphis could make a diagnosis.
    I finally got my own appointment with Mayo Clinic and agreed to an ileostomy.
    It was a 3 year hell. I knew how to take care of myself but I would have numerous accidents and many in the middle of the night. The stoma would stay irritated no matter what I did. I could Not wear anything but loose clothing so I bought maternity clothes. After 3 years I couldn’t deal with it anymore and Mayo reversed it.
    Thank God I was placed on Linzess and my life is back to near normal.
    I understand now how all my patients felt and I am so sorry I didn’t realize how bad their lives were.
    It doesn’t matter what causes you to have to have any type of ostomy because there Are some of us that hated it. I was just fortunate I don’t have one now!

    Reply
    • Joe
      Joe says:

      I’ve had a permanent ileostomy for ten years. It leaks, it stinks, and I wake up in my own excrement a few times a month. Yay to those of you who never have a problem. Based on my own experiences, a colostomy bag is irritating and debilitating. Yes I’m glad to be alive.

      Reply
    • Cath
      Cath says:

      Rose, Sorry that happened to you, but I would think a nurse would know better than to be so discouraging to those of us who do live with permanent ostomies.

      Reply
  11. PHYLLIS THOMAS
    PHYLLIS THOMAS says:

    When I was 17 years old until I was 27 I had ulcerative colitis. As soon as flu season came it hit me pretty hard from September until June. I was in and out of the hospital for 10 years until finally my family and I had talked to the doctors and there was nothing more they could do to help me. For 10 years my family and I knew that that would be a possibility of having an ostomy surgery and my family was very loving and caring and supportive. I was very fortunate in that respect and I was also very fortunate to have good doctors and good care from the hospital at St Luke’s in Bethlehem and I also had the support of an awesome nurse and I had two people they came and talked to me that were around my age and we got together several times after I was out of the hospital and I really appreciate it there understanding of what I was going through. That was in 1983 and now I’m 67 years old and if I wouldn’t have had the ileostomy I wouldn’t be here I would have missed out and all the years between 1983 and 2022 and I had to ostomy surgery in January of 1983 and in June I had to have a permanent ileostomy because my Crohn’s / ulcerative colitis came back with a vengeance and I needed to have a permanent surgery. I had asked some of the nurses and two of my doctors to come and talk to my family in the waiting room and let them know that everything was going to be fine cuz I know knew that they were worried about me and that they loved me. At first I wasn’t sure about what kind of ostomy supplies that I wanted to use so there was a lot of trial and error with a different suppliers but I found my permanent supplier at Young’s medical equipment had just what I was looking for. The uoa is a great system of support and encouragement. If you get a chance to ask your doctors if there is anyone that they know of that would be willing to come and talk to you and share their experiences with you and maybe let you know if there’s a support group in your area. I thank God for my family’s love and support and also for the care that I received from the doctors and the nurses at the hospital and for the two people that I became friends with. The United ostomy association can it also hook you up with suppliers names of all kinds of medical equipment including deodorants and accessories and clothing. Let’s end this stigma NOW!

    Reply
  12. Martha
    Martha says:

    My ostomy nurses are angels from heaven. I got bladder cancer two years ago, my ostomy saved my life. No bag explosions. No leaks ever. I know I am lucky.

    Reply
  13. Elaine
    Elaine says:

    I didn’t have a choice. I got Crohns at 17, three surgeries later, I’m now 66 and had my permanent ostomy at 31 to save my life. Everyday is a blessing, everyday is a reminder I’m different.

    Reply
  14. Carole Carter
    Carole Carter says:

    I was furious at Matthew Perry’s comments concerning the ostomy that saved his life. Well mine saved my life too from 24 years of Crohns disease that caused 20-30 bloody bathroom trips a day with frequent accidents and required blood transfusions! I didn’t appreciate anyone, including fellow ostomateswho equate having an ostomy to living in hell. It’s just such negative stereotypes that nearly cost me my life as I delayed surgery! I’m going on 20 years with my ileostomy and I so wish I could have the 10 years back that I delayed the ostomy. I think I’ve had a few leaks, but they weren’t nearly the mess as losing control with bloody diarrhea, and I’ve never had a bag break, nor woke up with feces all over my face. Matthew Perry will undoubtedly cause someone to delay life-saving surgery! Thanks super star.

    Reply
    • Karen Preston
      Karen Preston says:

      Phyllis, good for you for calling out Matthew Perry for his negative comments…if he hadn’t had this surgery, he’d be dead, and would’ve died an addict as well (his words). I don’t understand his mindset, after having a successful career, and all opportunity he’s had.

      Reply
    • Cath
      Cath says:

      Carole, Amen, sister! That is exactly how I felt after reading Matthew Perry’s article. After 40 years of worsening ulcerative colitis, to the point docs were going to put me on chemo-like drugs, I practice gratitude for my ileostomy.
      He and all the other selfish folks who think only of their own discomfort can go flush it.

      Reply
  15. Tee
    Tee says:

    As a 36 year old patient born with spina bifida, who is a life- long double ostomate, it does tend to be a bit much when thinking abt it, and trying to endure what all it comes with at times. Now that I am almost 8 years in with this thing, I roll with the leaky bag punches. Its taught me to say girl, life is what it is and that u have to enjoy it by abt means necessary.

    Reply
    • Rich D
      Rich D says:

      My brother got a colostomy at the age of 22 from ulcerative colitis.. he went on to become an ER Doc.. I watched him over the years were often he goes without a bag at all and just a cap.. if he drinks alcohol he needs to wear the bag to be safe… it helps he married a nurse, so it does not bother her but he’s lived with it for over 50 years and yes it saved his life… although I was devastated when he received it when I was only 16 but I have learned to accept it as many have..

      Reply
  16. Stephanie T Davis
    Stephanie T Davis says:

    My son had the surgery because he had chrons. Before he passed away he only had me to talk about the colostomy bag. Wish we knew about the support group because it affected him bad because he felt no one would feel comfortable with him.

    Reply
  17. Jack Dillie Jr
    Jack Dillie Jr says:

    I have had a colostomy bag since I was 42.I will be 62 next year.It is not a pleasant thing to have obviously.I still act like i’m 21 and I tell my friends that I am gonna live to 90+. I would like you all to know that you will never sleep the same again,obvious reasons but you don’t have to let it change you. I myself was back out on the ballfield playing third base within a year,playing until I was 50.Man I miss playing ball but it has nothing to do with my scars or my bag.

    Reply
  18. Rick Keith Sandell
    Rick Keith Sandell says:

    I was diagnosed with colon rectal cancer at age 60. Went through chemo , radiation and surgery and now I have ostomy bag for the last 7 years. At stage 3 cancer but luckily I was able to survive and spend the last 7 years in going with my wife. The hardest part is dealing with a hernia that usually happens when you have to have an ostomy bag it weakens your stomach .muscles. The alternative is to have the bag or die

    Reply
  19. Margaret
    Margaret says:

    Hello from Maine USA!! Living the life God gave me..trying to embrace the universe in a positive way. Went in for routine colonoscopy,,came out with a tattoo. Immediately went to Dana farber in Boston. There began my journey to the great unknown. Went from 213bls. To 135 first time in my life I finally had a flat stomach! Have had only one “accident “ but I’m actually aware it can happen if I don’t pay attention. My husband and family blessed me with unconditional love and support. I swim, work full time, garden and do most everything as normal. You ask how? And I say well, after the initial shock I decided that ok, this is what’s been dealt, DEAL WITH IT!! And I continue to do so. I have traveled abroad and the only hindrance was security!! Very embarrassing they go into all your supplies and even do a chemical check on your lubricant!!! This needs to b addressed!! TSA ASSURED ME this would not happen. The insensitive ignorant workers need to b more empathetic. Word of caution… watch diet intake before flights!! To all my fellow baggers… stay calm and carry on, and remember… we can mow the lawn rather than fertilize it! And for gods sake use your humor, it’s just a bump in the road.. your here ENJOY THE RIDE!!!

    Reply
  20. Carl Haldeman
    Carl Haldeman says:

    I have had a gut infection for many years and put off medical care because of the cost. I have had the symptoms of diverticulitis from the beginning. Am I at risk for ending up with a colostomy bag? The pain seems to be getting worse and I will probably get care before long. Thanks for all your comments regarding your experiences.

    Reply
  21. Teri
    Teri says:

    Cancer forced me into ostomy surgery.
    I’m not happy or proud to have this stoma.
    I am grateful that this is an option.
    My bags don’t leak out break or burst all the time.
    But, maybe Mathew experienced broken and burst bags all the time because of how he moved while wearing it.
    We weren’t there to see it.
    Don’t judge his experience based on your own.
    Gratitude before attitude.
    We can be anything we want in this world, so be nice.
    I am not a celebrity but I celebrate my life and carry gratitude for having this as an option.
    Love and light.

    Reply
  22. Bob De
    Bob De says:

    I have had a colostomy for a little over 11 years, rectal cancer. I was happy to be alive. Yes it was an adjustment. It limited my physical activity and affected my life when it came to intimacy. Two years ago , another tumor wrapped itself around my bladder. Fortunately it was not cancerous but it took my bladder. Now I have two ostomies. In the next 18 months I had an upper G.I. bleed, two fistula, and ended up with a J.P. drain to remove fluid from my lower pelvis. The tube comes out of my left butt cheek. It puts out over 100ml of fluid a day.
    Honestly it is a lot to deal with at times and I may have an occasional short pity party but I choose to embrace life. I thank God I am still alive. I am retired/disability and I wake up every day ready to have the best day possible. It changes our lives, but it doesn’t have to destroy us.

    Reply
  23. Nicole Nicely
    Nicole Nicely says:

    I was wondering….is Matthew Perry talking about ending the stigmas with having an ostomy??? I ordered his book so I haven’t read it yet. I think it would be great if he was talking about ending the stigmas associated with them. He is a wonderful person. God Bless him.

    Reply
  24. Morrie
    Morrie says:

    Crohn’s disease sufferer here. First surgery in 1983; failed. Needed emergency 2d surgery to save me, woke up with an ostomy (had never been warned it was even a possibility) and was infuriated when I woke up to say the least. It was not a great ostomy but it was explained to me that because of the progression of the disease, this was the best they could do. Fortunately, only needed it for seven months and it was reversed. Had another one some years later — a much better one. It, too, has been reversed. I have had surgeries since but am lucky that the last one was about eight years ago. Now I am fortunate to have found a biologic that has kept my Crohn’s under control.

    I am alive today only because of an ostomy. As difficult as it was to have, I will always be grateful to the surgeon who did it.

    For those of you who were not as fortunate as I and have to continue living with an ostomy, I salute your courage to get on with your lives.

    Reply
  25. Sue
    Sue says:

    Next year will be 50 years of living with my ileostomy. I would not have had those 50 years without it. My colon ruptured due to UC, my surgery was an emergency, and at 17, I woke up with a bag. I hated Matthew Perry’s description of his experience, and his feeling sorry for himself.

    Reply
  26. Ed
    Ed says:

    Stage 4 rectal cancer. Diagnosed 4 years ago. When I first read this quote from Mr. Perry, I could relate. The more I have thought about it, the more it has angered me. His entire message about this book is how he wants to help people. But his comment about the ostomy is doing the exact opposite. Anyone who has or had one should tell their story to help others.

    When I was first told about my rectal cancer, my worst fears came true. I was terrified of having a colostomy. I was willing to do anything to avoid it. I was told day one I needed it but since the chance of getting rid of the cancer without getting one was greater than 0, I was willing to try. I went through an initial surgery and 26 rounds of radiation and chemotherapy. Didn’t work. It spread to my liver. Had 26 more rounds of radiation and chemotherapy. A liver surgery to remove 3 tumors. Came back again. Had 16 rounds of infused chemotherapy. Another liver surgery to remove another tumor. Then spleen surgery. Finally, last year I had an APR that removed most of my lower half and a permanent colostomy. It has been rough. Got sepsis in the hospital and was there for a month. Took months to recover and a year before I started feeling decent. As soon as I got home, I developed a parastomal hernia. Common but painful, awkward, and in my opinion, worse to deal with than the ostomy.

    In the hospital, I could not even look at my colostomy for several days. Made the nurses do everything. I was afraid of it. Wasn’t given much training and certainly no information on options, proper care, etc. Just sent home with what they provided me. I have dealt with a lot of leaks and other embarrassing situations. Having a support system like a helpful wife made it easier. But it wasn’t until I saw a local ostomy nurse that helped me find an appliance that works for me and my hernia. Things are better but not perfect. I still have the occasional leak. Your body does what it wants when it wants. Your body changes after the ostomy. It processes food differently so you have to adapt your diet.

    My cancer has moved to my lungs now so that is the next battle for me. More surgery. Don’t yet know about more chemo. Had I listened to my doctors early on, I probably could have avoided the metastases and everything that came with it. But I was too afraid of what life would be like with a colostomy.

    You know what, it isn’t that bad. I am still alive. I have a great support system, doctors, nurses, family. Sure, life is different than I imagined but a colostomy and cancer do not define me. I don’t know that I will ever be cancer free (I hate that term. I prefer cancer independent) but I do know that I am at peace with my decisions and I am no longer afraid of living life differently.

    Yeah. F*ck cancer. But surgeries, treatments, and a colostomy have kept me alive. Don’t be afraid. Be grateful. Embrace life and those important to you.

    Reply
  27. Andre
    Andre says:

    I had pancreatitis that caused a large bowel obstruction and fluid to leak into my stomach which caused a hole hole in my intestine and my colon to swell…. I had to be rushed into emergency surgery and when I woke up I had 2 osteomy bags on the right side of my stomach. I had one removed already but the other won’t be removed until January 2023 but it absolutely saved me from dying.

    Reply
  28. Dr. Kenneth Crawford
    Dr. Kenneth Crawford says:

    Long story short, a botched Crohn’s colon resection resulted in sepsis, peritonitis, MRSA, and three weeks in a coma. I ended up losing addition large bowel and rectum—the colostomy bag is permanent. After recovery, I finished five years as a public school superintendent, until retirement. I never felt stigmatized. It helped that I was always upfront and honest about my condition. Other than an occasional spontaneous fart noise, it has never been a social problem. Personally, I do, and have felt, less sexually attractive, despite my wife’s best efforts to the contrary. But, in the end, I do everything I did before and live an active life—except for swimming and hot tubbing. Bottom line, I love life and am thrilled to be alive.

    Reply
  29. Victoria Woodworth
    Victoria Woodworth says:

    I was diagnosed with Crohns disease in 1985 in my 30s and have lived with an ostomy since 2002. The adjustment was initially a very difficult one, but the surgeries saved my life (I had one in 2002, and another in 2004 when the disease came out of remission). I am now in my 60s and live an active and varied life. I dress in a way that I like and that makes me feel attractive and like myself. I have struggled hard with accepting my body’s appearance ( I have major scars and while I can hide them with clothing, there are things about myself physically that are very different from most people; things that are a permanent part of me now). But I am grateful to this body, for being so strong in spite of its struggle for health. If there is a stigma towards people who have ostomies it is simply because there is no understanding of how it really is, to live with one, or why it is necessary for some of us. I think the more openly this is talked about, the less power it will have to be stigmatized. I for one am grateful it was available to me because I would not have survived without it.

    Reply
  30. Lorraine Patterson
    Lorraine Patterson says:

    40 years from ulcerative colitis for years and my oldest daughter has ulcerative colitis also. Don’t eat during the day. I was a teacher so who has time to deal with it during the bag filling up. Ulcerative colitis is extremely painful so an ilieostomy eliminates that. SNL made fun of wearing a colostomy bag and it was hurtful. It could always be worse. I think going without heathcare in between jobs when young made everything worse for I couldn’t get care nor go to an ER without insurance.
    I have arms and legs and can hide the bag. Having served homeless that live on the streets literally with cancer and other chronic illnesses while one was even waiting for a transplant, having a secure roof over my head makes me feel blessed despite people not understanding how hard it is dealing with this is.

    Reply
  31. Suzy
    Suzy says:

    Support, education and proper aftercare are essential in learning to navigate a new life with an ostomy. It truly is a life saving event for many of us. I think it is important to share all the resources available to get the support that can truly impact the quality of life with an ostomy. Support groups are a fantastic way to connect with others and learn so much.

    Reply
  32. Beverly Howard
    Beverly Howard says:

    Many people are walking around with an ostomy. I’ve have an ileostomy. diagnosed with Colitis when I was 18 years old. I had surgery 1 month after I turned 19 years old. I am 68 years old. Without the surgery, I would have died. Yes, I had plans for my life and was going to college to be an account. I was also working part time. Mr Perry you had a full life free of everything you saw as a disappointment. My life had just begun and I am grateful. My ostomy is my best friend. Talk to someone that have to wear a bag for the rest of their life.

    Reply
    • Michaela Elliott
      Michaela Elliott says:

      I was diagnosed in 1996′ I was 29yrs, with colitis. Never heard of such a thing, and in my intestine(butt), as I take meds the doctor gives my goal to make it go away! I’m too busy working and raising my family.
      I just kept getting sick, loosing weight, going to the hospital because I was loosing blood(in my stools)….
      By the time I was 34yrs, I had a permanent ileostomy Due to, too many resections there wasn’t anymore they could do. So I was on so many meds from all this, I was mentally and physically a mess!!!
      I am 55yrs now, have been ocustome to my “bag”, I haven’t been sick from my belly in over 11yrs. I have my small intestine with my bag.
      I never received information on how to live with this for the rest of my life, I have spent year’s reading and learning about my expense, ileostomy and what works for me!
      Thank you all for sharing your lives and stories! I use experience as part of my own learning.
      Sincerely a bag wearer forever….

      Reply

Trackbacks & Pingbacks

  1. […] président de United Ostomy Associations of America, James Murray, a écrit une déclaration (via stomie.org) à propos de son souhait que davantage de personnes aient un état d’esprit plus positif à […]

  2. […] President of the United Ostomy Associations of America, James Murray, wrote a statement (via ostomy.org) about his wish for more people to have a more positive mindset about this surgery and that the […]

  3. […] President of the United Ostomy Associations of America, James Murray, wrote a statement (via ostomy.org) about his wish for more people to have a more positive mindset about this surgery and that the […]

  4. […] President of the United Ostomy Associations of America, James Murray, wrote a statement (via ostomy.org) about his wish for more people to have a more positive mindset about this surgery and that the […]

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