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Posted by Head

Hello this is my first time blogging.

i have a Colostomy.  My 2 year anniversary is March 2018.  This Stoma has changed my life dramatically.  I’m physically healed.  I use a 1 piece closed pouch.  I have learned to take care of my Stoma.  My wife understands but feels it my issue.  Like a woman takes care of her female issues I should be able to handle mine.  Which I do.  I struggle with the confidence to go and do all the things I use to do.  I travel, going to dinner hanging out with friends.  I don’t go to the gym.  Workout gear not fitting right.  No pools or beaches my physique is changed.  I need to embrace this new normal instead of this settling feeling.  Missing my SWAG.  When does it come back?

See all blogs by Head
LadyHope : Good afternoon, Yes this is a big change and the transition takes time to adjust and to accept. My stoma-anniversary is March as well. I still have down days but overall things are pretty good. I used to ask why me, how did this happened... but now I've given up asking because everyone has something in their life that is less than perfect. My UC was horrible and I still remember the pain, sickness, fever and anemia. I am grateful for the chance to continue living my life. Thank you God of the gifted hands of my surgeon. Take care and celebrate the anniversary of your stoma. Our stomas are our lifelines.
Past Member: Hi there! Life is so short. If you love the beach, ocean and pool, why stay out? Are you in the USA? Men in North America now where these baggy bermuda shorts kind of bathing suits. I'm old enough to remember when men wore speedos! I'm a plus size woman, so I wear a bathing suit with a skirt to hide my ileostomy. Either way, I think you could hide your colostomy in those baggy swim shorts. So I'm wondering if you are afraid that your bag will come loose in the ocean or the pool? Here's my experience: I have had my ileostomy for 9.5 years, I swim laps 1.5 hours, twice a week during the winter; I spend 3.5 months a year in Florida and swim daily there. In August. I swim long distances in the Laurentians --in 2 different mountain lakes...usually about 1 km. each way. And in July, I snorkel for hours in Pompano Beach, Florida. I have never, ever had a leak or "wardrobe malfunction" of any kind. I simply "picture frame" my flange with 4 pieces of Hypafix tape. It's a very sticky, breathable, non latex tape. I wish I could attach a photo. But if you google it, you'll find it easily. I use the 2" tape. There is another waterproof seal called: SureSeal. Please google that too. It is really waterproof....but I get a rash if I wear it for more than 2 days in a row...I think it may contain latex...not sure. Nothing is going anywhere if your tape your flange to your body. By the way, I use the Colopast 2 piece Sensura Click Bags with the velcro opening. They feel secure to me. I've been a water baby my whole life...and an ileostomy has not changed that. Embrace the beach. Please. Take your wife to a lovely beach. Make her and yourself happy! Good luck, Julie
Head : How long does it take to get completely comfortable wher you don’t give a F*ck!
Past Member: Head, I had to read your last message first I thought you wrote ....WHEN you don't give a F*ck. And I thought, oh my g-d. This guy needs to talk to someone. Then I re-read your message and think you meant to say, "where". If you meant, how long does it take until you don't care about having a stoma? Well my surgery was in Sept. 2008, and by Jan, 2009, I was in cuba, sailing and swimming and enjoying the beach with my family. I felt free and happy. Prior to my stoma, I could have never gone on a 3 hour plane trip ride without having an accident or wearing a diaper. My stoma gave me freedom back. I celebrate that freedom daily. Yes, I get scared too. My stoma was not an issue with my loving husband, but now I'm a widow, an into a new relationship with a younger guy, and so far, I haven't told him about my stoma. I'm afraid he'll run.
Head : Thanks for responding and you are right I meant where you don’t care if your bag is seen under your clothes. I’m not afraid to travel. I was on a cruise 8 months after surgery. I’m not feeling like the guy I was before.
Head : My Stoma was an emergency. I was not sick before.
Bill : Hello Head. You say that you have a colostomy but you don't say whether you have tried irrigation. If you haven't already tried it, then I would strongly recommend that you look into it and give it a go. It's not for everyone but for those like me, irrigation has freed us up from wearing bags and all that messing about finding toilets and cleaning up during the day. It gives us back much more 'normality' and freedom from worry than wearing bags can. I wear a coloplast plug but I know others who simply wear a cover for protection and it is hardly noticeable even in a swimming costume. Maybe your SWAG doesn't come with the BAG but it might well make a comeback with irrigation. Best wishes and I hope you get your SWAG back soon. Bill
Head : I have been thinking about irrigation. I’m kind of gross out by this process. Seems cumbersome. When you travel are irrigating? This would bother my wife in the hotel or cruise ship.
Head : I went to service this morning. It’s all good. Everything works together for your good.
Bill : Hello Head. Procedures like irrigation can seem gross and cumbersome but if you think about it, they are no more gross or cumbersome than any other method of expelling waste products from the body. The main advantage of irrigation is that you get it over with in one session, rather than many mini-sessions spread out over time. I tried to calculate how long it took with both methods and found that the irrigation was much more time-efficient. There cannot be many things more gross than leaks and bag emptying, which doesn't happen with irrigation. However, I find that the main advantage is that there is no wearing of a bag, so all the problems associated with it are no longer relevant. Your wife will probably not be involved in the process of irrigation as it takes place in the toilet area in just the same way as 'normal' people go. However, she will benefit by having a partner who doesn't have to worry about where the toilets are or whether there will be embarrassing moments in public. It's all about weighing things up to see what suits you best. Most people who irrigate find that the advantages far outweigh the disadvantages. Best wishes Bill
Head : Thanks Bill, I’m considering it. Right now I use disposable (1 piece closed pouch) and my output is formed - no leaks, no emptying just throw it out. I really appreciate your advice.
Susanne : Hi Head, I got my permanent ostomy in October 2017 and I was devastated, but now I am beginnning to live again. I go to the gym daily and do everything than before. I started irrigation in December and this gave me back my confidence and staying dry all day is worth it to me. I only take about 30-40 minutes and do it always at night, and 95% of the time I have no output all day. I am so glad for irrigation and it is not gross at all. EVerybody has to go, so it doesn't matter anymore where it comes out of. Yes, I have days when I ask why me, but hey, we all do that. It was a huge surprise to me as I was always very healthy but they found rectal cancer stage 1 last year when I had appendicitis, shocker. At that point I wanted to die as I could not see myself living with a fricking bag. However, since irrigation, I feel in control again which is great. I also love the beaches and have no problem going into the water. Using the bathroom in a hotel for 30 minutes is no big deal anymore and nothing holds me back from what I used to do before. Thank God for irrigation. At the beginning before irrigation I hated to always check the bag and see if something is in it as I still work full-time, I did not like it and had quite a few leaks as well. I would definitely recommend irrigation for anybody who an do it.
Anoniem18 : I guess I was really lucky my attitude proved that I worry about things I can change and ignore those I can't, and under those circumstances I accepted the result of loosing my colon, but luckily managed to continue living a life without worrying about having an illeostomy. You can read some my blogs where I was interviewed and I wrote my own story about my experiences with health care. I wish you good luck, Cheers, Ed Maste
Head : Ed and Susanne thank you for your response.
Mrs.A : I think it starts when we figure out why we feel as if we've changed. Our bodies are altered but we will always be who we really are. Things change us if we allow them too. If we have to make adjustments well, that's normal we do that all the time. Celebrate life and go on living!
Head : Thanks Mrs A for reminding me that I will always be me and for me to celebrate Life. Father, I thank you for my life.
Mykxman : I had colostomy in Aug 2017 due to various probs with infections in the two perianal wounds I didn't start irrigating until 4 weeks ago . I was one of the lucky ones I had a T2 tumour rectal/anal , I have a flat Stoma . I have had regular leeks and had zero confidence due to sudden problems caused by extreme pancaking . As I said I irrigate daily at present , 4 weeks in and the reaction is becoming more predictable , I had probs in the first weeks due to pancaking still . Now I am getting far more confidence , each morning the bag is empty it's great . Half an hour out of my morning and I'm good to go .
Head : Thanks for your response. I’m thankful that I have no medical issues (leakage, irritation or hernia). I haven’t tried irrigation yet. Mental block of the process. If I were single maybe. My wife is not excited about the Stoma Maintenance. Out of sight Out of mind theory.
Rhdjailer : I guess I'm stupid what does irrigating mean it's the first time I heard of it could you please explain it to me I am new at that thanks donna
Mykxman : Answer to Rhdjailer , irrigation is the introduction of approx 1Ltr of warm water into the Stoma . This causes the peristalsis reflex and the colon contents are evacuated through a cellophane Shute into the toilet . It is carried out in my case once every 24 hours , between irrigations there should be zero out put from the Stoma . Zero output means no toilet hunts or worrys when out and about and as you become more confidence and the colon more trained no bag is needed . Talk to your Stoma nurse .
Head : Thanks for the detailed explanation.