Recovering from Colostomy: Seeking Hope & Support

Hi PNWGirl, welcome to MAO! You came to the right place to talk, laugh, cry, learn, and vent. This journey is overwhelming at times. In the early days, everything is so new and scary. Each day that goes by, this process will get easier...not all at once, but one day at a time. What I found very helpful when I was a brand new ostomate was local ostomy support groups and connecting on this website. We really learn so much from one another. From what you posted, it sounds like you are embracing the "new normal". It takes time, so be gentle on yourself. It has been three years for me, and I am still learning. I gained my beautifully independent ostomy that I named Stanley because of severe UC that would not resolve. I suffered for about 5-6 months and had to have surgery. I went back to work 7 weeks post-op. In the beginning, I took things slowly because the surgery completely exhausted me. I was very nervous about going to work because the thought of leaks haunted me. Today, I carry Hi-tape with me...just in case. You can buy this pink tape from most medical suppliers. It will secure a leak, giving you time to get somewhere to make a change. I also carry supplies with me. I saw that you mentioned odor, which is a common concern. I am an advocate of the ostomy deodorizers. They help to minimize smell. I like M9, Na'scent, and Safe n Simple. There are many others on the market. It is a matter of finding out what product works best for you. Clothing is another concern for most of us as well. I find that I can wear most of my pre-surgery clothing. I do wear support boyshorts that I purchase from Walmart. They are snug, keeping things in place for me. Other people really like the specialty underwear from Awestomy and Ostomy Secrets. If you have time, check out their websites. Google other items too. My last suggestion is to subscribe to The Phoenix Magazine. It is a great ostomy resource, and the articles are very uplifting. Your wound care nurse may have a copy available for you to review. I subscribed for my first year. Take care and keep checking in with MAO. We are here to help one another. Talk to you soon. Sincerely, LadyHope

Hi one girl, I am Rosiesmom. Rosie is my stoma; she was literally a life saver. I had laparoscopic robotic surgery in March of 2014 due to a large rectal tumor. Did the chemo radiation, etc. It took time, then surgery, and Rosie became my new BFF. Since then, I have traveled extensively and can do anything I could do before. It is scary at first, but coming to terms with your new normal will stand you in good stead. Don't look back; it serves no purpose. Stay straight ahead; life is good, and it will only get better. I use the 2-piece Coloplast system with Velcro closure; it is great. A little Vaseline on the front of the base makes things slide better. And always carry additional supplies in your bag. Good luck, chin up; you are now a part of an elite group. God bless.

Thank you RosiesMom... I like the analogy... we are part of an elite group. Happy Thursday! Almost the weekend. LadyHope

I have to empty it several times a day. I have learned to live with it.

Lots of great advice and sharing in this thread. Everyone has their own way of taking things on and learning to deal with them. You will too. I find it best to celebrate the small steps you find yourself accomplishing each day. One day you will discover it's not such a big deal and it won't change much in your life once you've found the products that work best for you. Most if not all of the manufacturers will send us free samples to try if you ask and some of them will make a difference compared to what you have found already. Chin up, you can do it, I know because we were all where you are. Keep posting, we're here for you!

I had a colostomy 8+ years ago due to colon cancer. When I woke up, I didn't want to live, but thought I would get along day by day until I could end it. Some of the people on this site really helped me to learn to deal with all the facets of the situation. After a while, I got along so well that I frequently forgot I even had it, except for occasional accidents, usually my own fault. Now it is a part of me that I forget is even different. As I see people with pain or incontinence, I am glad I don't have that kind of problem. I would rather be me and have what I have. I went back to work and was able to do everything I did before, and I enjoy life as much as ever. It is just another step in life for me. As you learn how to deal with it and what products work best with your body and lifestyle, you will get used to it. You will be OK!

Hi, I too was scared and upset when I woke up with an ostomy bag. I had my surgery in August 2015. I was very embarrassed and didn't want to talk about it. It took a while before I got comfortable with it. My surgeon saved my life. Recovery took a while; I was in the hospital for 3 weeks, then went to a rehab for another 3 weeks. I'm supposed to have this reversed in August. I go see my surgeon in June, so I'm keeping my fingers crossed. You'll be fine.

Gsunshyne

I look at my colostomy as a freedom. I lived for 5 and a half long years with having to know where every bathroom was in a fifty-mile radius. There were times I didn't even make it. There were times I hated what cancer did to me. More often than not, I've had more good things than bad things happen to me. When cancer came back in my rectum, it was another turn in the chapter of life.

This is just a speed bump in my life and it's a very small one. A little learning curve on how to control my ostomy instead of the other way around it or make it livable. It's a matter of attitude.

Whether you think you can or can't... you're always right. (I forget the author, dagnabut) but I choose to go forward, make the best of the hand I was dealt, and be the best I can. I hope you all can too.

Thank you Ozzwood for such insightful words of wisdom. Happy Saturday! LadyHope

I had my ileostomy surgery in October 2015 and it has now been 6 months. I am still learning and my emotions have been up and down. I have had some problems arise and hoping to get used to having this. There is so much support out there and you have come to the right place. You could have died....you are a survivor!

Hi Classy_BCGirl, great post and thank you for sharing. Yes, I agree that this is an excellent site to connect and talk/vent about life with an ostomy. I have learned so much from the people here. I am grateful. I had my surgery three years ago because of severe UC and it came on very quickly. Nothing worked to put the UC in remission, so surgery was my only option. I most likely would have died if I did not have the surgery. Here I am....taking it one day at a time. Thank you again for your post. Take care and have a great Thursday! ;LadyHope

Take a deep breath, let it out.......just relax it will be alright. I have had mine for 10 months now......sometimes I get aggravated with it but, I remember the other option I had, and this doesn't look so bad anymore.

Kathleen

I had my surgery last August and felt exactly as you do now. I am now living a normal life, although it took me about 6 months to get my energy back. Please try to relax and hang in there. My hands used to shake when I changed my bag, and I was very grossed out and feeling overwhelmed by it all. But now, I'm still new, so I have a lot to learn, but I am doing very well in every way. Yes, normal life is possible, you just have to keep learning and, like learning anything, you'll have your ups and downs, and the exhaustion will color your perception of how you are progressing. Stick close to an ostomy nurse you like. Hope you have in-home nurses available for a while. I had surgery, then went to skilled nursing, then home care. Now I can see my ostomy nurse as needed, as long as it's once a year.

I have had my colostomy for 3 years now. I still have moments feeling so sad that I have a "BAG" collecting my feces. It will take some time, but as the days and weeks pass by, it will get easier. Just hang in there!!!!!

A new colostomy is definitely overwhelming...but once you get used to it, it's really no big deal at all. You'll get there! ;

I use disposable bags too. I use a two-piece appliance (not sure what you are using), and have found that for me, Convatec has worked really well.

Sometimes I feel like there is a tiny bit of odor, and I usually figure out after a while that it's just gas and I can put a little sticker thingy (like you would use for showering) over the filter and I'm good to go. Very rarely have issues with odor though.

They also make tons of different deodorizers that you can put in your bag (liquid) to help if you feel like it smells. For that, I use M-9, Hollister brand.

Sunny1978

Hi everyone - it's been 40 days since my surgery and I'm doing better. While I'm not friends yet with my colostomy, I'm not terrified either. It is what it is and it'll be with me for a year, and then I'll have a reversal.

Recovery is nothing like I anticipated, but it's baby steps. I am still really sore, and I find that when I overdo it, I pay for it like I am today. If I am lying reclined, I have no pain, but if I stand too long, walk too long, or sit too long, my upper belly hurts and is sore. I tried to drive - big mistake.

I have had my share of equipment failures and leaks, but I'm hanging in there.

Thank you all for your support. I am not sure what I'd do without you all.

Xo

PS - I named my stoma Donald Trump.

You are progressing, it just takes a little time. Keep us posted of your progress and ask questions. Good luck. MMsh

You must be feeling better....cause that is flippin' funny !!!

Hello...I remember the days you're referring to...so scary and it's a loss for sure but you can and will regain your life again! I have a permanent colostomy since October 2014 due to colorectal cancer. Yes, it sucks but without it, I can't live. I'm now cancer-free with a good prognosis...the adjustment takes time and patience but my life is pretty much back to normal and yours will be too....just take it one day at a time...some days even one hour at a time!

Blessings - CH

Same thing happened to me 3 months ago. Takes time to heal. Walk as much as you can. Good luck.

Two years ago, I had colon cancer and underwent months of radiation, chemotherapy, and surgery. I wore a bag for 8 months with no problems. My family talked me into reconnecting my colon, but it turned out to be a big mistake. I had a blockage for 3 months and almost died. 2 months ago, I had a permanent bag. So far, I have had no problems. My energy is slowly coming back, and I try to walk every day. It takes time to recover. The bag has saved my life.

Hi, I had to have my colon removed in April of this year, which resulted in a colostomy. Honestly, I am having challenges accepting it. For this will be a part of my life forever. I try my best to be good to myself. I think I have a solid grip in terms of managing the appliances. It's hard to get used to having your poo come out in this way. I want what you guys have. I am trying my best to stay positive. Thanks, looking forward to hearing from my fellow ostomies.

Hi Bettyjoe...no question, it's an adjustment...and being "good" to yourself is important, but also don't beat yourself up for grieving your loss...and it is a loss. I've only had mine for a year and a half and like you...I feel like dealing with it the rest of my life is overwhelming sometimes, but when I start to feel that way, I just remember that without it, I can't live and I don't want to face cancer again, and hopefully this will prevent that! Life is a funny thing...something else that helps me is to know that you can look around and always find someone worse off than us...I hope that you will eventually come to terms with it and know that there is a whole big beautiful world out there, and thankfully you're here to experience it...blessings to you!

Hi, thanks for replying to my post. It's really nice to get the feedback. I believe that I will be adapt and hopefully go back to work and enjoy the things that I enjoyed, which wasn't much but it was good. I am happy that you and most people on this site are doing well. I hope to stay connected. I need friends that understand.

Try not to overdo it. This experience has proven to enhance my patience. Stay strong although sometimes it is rough. You will get to the other side.

I am wondering why Donald Trump?

Good evening PNW....I am now where you were in the beginning. Reading your post was as if I was listening to my own thoughts. I underwent an emergent colostomy due to a perforated bowel from diverticulitis...I didn't even know I had diverticulitis. My fears are much like yours...every pain panics me. I am also now dealing with an infected incision - showers twice a day with dry sterile dressings three times a day. It's been exhausting....and now we are dealing with leakage....it seems to be a never-ending battle.

I hope you are feeling better now and feeling stronger. My surgery was six weeks ago. I now take things one day at a time. By the way, I have named mine Leftie Louie!

Hang in there, my friend....better days ahead.

Hello pnwgirl.

I am almost a year out of surgery. I had my entire colon removed due to ulcerative colitis.

I think it is different for everyone based on the surgery and how else whatever led to the surgery affected your body. I went into surgery after 18 months of anemia, muscle weakening, and terrible spasms. So I am just now to the point where walking around too long or lifting things is uncomfortable and I need to rest. Before, I could barely move, but my back was so messed up that it was the majority of the problems in that department.

In terms of equipment failures, what do you use? I have been very successful (knock on wood) so far using a combination of two-piece systems with a barrier ring around my stoma. Since I started using them correctly, I have not had a big issue. My biggest issue is a bit of a rash around the adhesive where the skin is irritated from shaving.

Hope you continue to improve.

Hi Zito,

You're already ahead of the game because you went to Mt. Sinai in NYC where they have the best GI doctors and colorectal surgeons in the world. I began my UC treatment there about 25 years ago and had my first surgery 12 years ago. Prior to that, I bounced from one GI doctor to another and all they ever did was adjust my dosage of asulphadine. I gave up on going to local doctors and made the commitment to travel into Manhattan for my GI care. Ever since I did, I have had my UC under control and definitely got my life back.

Over the years here at this website, I have read too many sad stories of botched surgeries from ostomates who did not choose the best available doctors. The medical student who graduates at the very bottom of his or her class is still called "Doctor." Some people may not be in a position to select their doctor, but if you are, you owe it to yourself to do some research on prospective surgeons and hospitals. There are lots of ways to get this information, but that is a subject for another thread.

PB

Hi - I haven't been on this site for a few months but today I did and saw your post and had to reply.

Your condition sounds almost identical to mine.

I had my colostomy op about 3 years ago and have come a long way since then.

I learned how to irrigate as I didn't like the idea of wearing a bag collecting waste when my bowel felt like it.

If you haven't tried this and as long as you are able to, I thoroughly recommend it. It takes a little practice and patience and I need up to an hour each morning to do it.

But for me, it means I can then usually just wear a mini pouch and as a rule 95 percent of the time, have no issues at all. Irrigating also reduces wind issues and personally I feel much healthier for it.

Since my op I have traveled to the USA and the UK several times on business (and have had holidays with my wife abroad) and I manage just fine. In fact, I can do anything now which is a long long way from where things were at leading up to my op.

I do hope you have come to terms with your condition now. I have "dark days" occasionally but life is what you make it and you can do anything you put your mind to.

Best wishes

Mike

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