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Posted by Oldbiller1958, on Tue Jul 03, 2018 10:44 pm
Hello, this is my first time leaving a little blog I have had my Ostomy for 1 1/2 Years had a iliostomy for 3 yrs before . I guess my question is how long it takes to get really comfortable with an Ostomy? Still having problems☹️< >
Past Member
Reply by Past Member, on Tue Jul 03, 2018 11:08 pm
I don't know if we ever get comfortable. Time does make it better but this is something none of us asked for. I've had my urostemy for 1 year. Yes I have learned to move on but comfortable not really. It's easier when everything goes right and no leaks but time heals and does make us feel better and I'm here to see my son playing minor league pro baseball. I always look for the bright side in life now. Hang in there we'll all adapt.
Reply by Oldbiller1958, on Tue Jul 03, 2018 11:28 pm
Thank you tomoc , and yes Iam blessed to be apart of my grandsons all 5 of thems life. And it is the comfort Iam looking for also. It's just some days I think that will never happen but I will never give up.
Reply by Vangie, on Tue Jul 03, 2018 11:31 pm
I've had my ostomy since March 27 of this year. I thought it would be more difficult to deal with but I just look at it as another way to deal with a normal body function. This thing does not change who I am or what I belueve. I will not let this little bag shake up my life. You are still the wonderful person you've always been. The people that count still love you. Your alive and moving forward. Hold these thoughts in your heart. Really this does not change you except you know now you are a survivor. That is very special. Find the funny stuff about your ostomy. As long as I'm cancer free I'm really good! Write to me anytime.
Reply by Oldbiller1958, on Tue Jul 03, 2018 11:43 pm
Thank you Vangie, I know the people around me still love me. It's me and I will figure this out and yes Iam still the same person I was before this happened.
Reply by Vangie, on Wed Jul 04, 2018 12:03 am
Well really your not quite the same, your stronger.
Reply by elvira4444, on Wed Jul 04, 2018 11:41 am
I have had my ostomy since feb 18th 2017 when I had to undergo major surgery to save my life due to a massive colon infection and at the same time they found I was already stage 4 with non Hodgkins lymphoma which I NEVER would have known about had the infection never happened,I have gone through and still going through chemo and right now happen to be in remission,its been really hard but I too am grateful to be alive and also have realised I am stronger then I ever thought possible.hope things get better for you and always remember you are a surviver!!
Reply by Vangie, on Wed Jul 04, 2018 12:09 pm
Wow! What an incredible story. God's hand of protection is truly resting on you. Yours is a story of a blessing and a testimony. You just made superhero in my eyes. You Go Girl!
Reply by Oldbiller1958, on Wed Jul 04, 2018 12:40 pm
Elvira You are an amusing lady and thank you for your amusing testimony.
Reply by Oldbiller1958, on Wed Jul 04, 2018 12:43 pm
Amazing amazing
Reply by Rosiesmom, on Wed Jul 04, 2018 4:07 pm
Hi, Rosie and I have been a team for a little over 4 years now. I chose to accept my new normal when I awoke from surgery and felt my left side iI new then this was forever as my surgeon had told me temp on the right permanent on left. I was alive and an hour later he told me he felt confident that he got all the cancer in my rectum , more chemo followed but I chose not to look back just keep forging ahead. There was the usual learning curve ups and downs but that is LIFE and I was living it every day. My amazing hubby fam. And friends were great cheering section. I still am opinionated ha, they didn't give a labotomies lol. I travel and do all the things I did before just with more gratitude for all of it. So hang in there you have already proved you strength by coming this far. Very sincerely Rosiesmom aka Gail Happy 4th. I F
Reply by Oldbiller1958, on Wed Jul 04, 2018 5:42 pm
Thank you Gail
Reply by Oldbiller1958, on Wed Jul 04, 2018 5:45 pm
Happy 4th of July to all of you that have shared your story's with me and have giving me a new family to talk with. Thank you all so much
Reply by bremen313, on Thu Jul 12, 2018 12:53 pm
Hello, In my case I had suffered through Brown's disease for too many years by the time it was diagnosed. They first said I had colitis and put me on medication. Then they called it colitis and a new med. I still kept getting worse. Then they called it ulcerdated colitis but I still kept getting worse. At about that point I just stopped eating because the pain would be so bad after I ate. I got down to about 70 lbs. I am very short but that is still way too thin. I was hospitalized for malnutrition. After being there a few days I had a stroke. I woke up at another hospital annoyed that about six people were standing around my bed. I may have even muttered a "what are you looking at!" at them. They started asking me questions which I answered correctly all except for the day, date, hospital and location. The doctors at this hospital didn't pull punches at all, which I am grateful for. They diagnosed Carson's disease and put me on the correct medication. It was prednisone so I couldn't stay on it long term. At certain points they had to start lowering the dosages to wean me off of it for a while. When the dosage got to a low enough amount I started getting very sick again. They were very straight forward again. They told me that, in their opinion, my colon would never heal well enough to ever be reconnected. I had two choices at that time. Stay on medication and be sick about half of each year when I was on low dosages or have the colon removed. He said I stood a much better chance at remission but the I.l.e.o.s.t.o.m.y would be permanent once the colon was gone. I had been in so much pain and suffering with Carson's for so long that I didn't haveto think about it at all. I said take the colon out. They wanted me to think about it since the ostomy would be permanent. When he saw me again my answer was the same. I never needed to think about it at all. The surgeon said my colon looked like shoe leather when he removed it. I went into remission and that has been well over twenty years ago now. I have never regretted my decision. To me, the ostomy took away the pain so air have never regretted it being there. Of course there are adjustment issues with good and bad days for everyone. My advice for them would be to take every day one day at a time. Whatever happened before, tomorrow is a new day. Yes, leaks are embarrassing. Learning what you can and can't eat without having issues afterwards, etc. is part of the day to day living philosophy. As time goes by you learn how to live with it and avoid problems. Like I know when I feel an itch around the stomach, the wafer seal is coming loose and I need to change the appliance. It may be natural for some new estimates to be fearful and nervous about the things that can go wrong and how can they handle the embarrassment when or if it happens. The fear of rejection is also real. Rejection always stings, no matter if you deserved it or not. I've learned that and would tell others not to live with the "what if ..." fears. The bad news is leaks will happen and you probably will be out in public when they do! I've also learned that the people around you take their cues from you, for the most part. So, if you panic or act nervous about it, so will they. If you act like it is this is just something you have to deal with from time to time, others will also. Most of the times I have ever had to make a change the others around me never knew there was a problem at all. I went into a restroom with my purse, used my emergency supplies always with me, changed the appliance and went on with my day. The good news is that the occasional bad day won't kill you. Tomorrow is a new day. I am completely fine with myself. After all this time my ostomy is something that is just there to me, like a left pinky or something. Unless I have to deal with it, I usually forget it there. So, it is very possible to become comfortable with an ostomy. I imagine how long that takes just varies from and depends on each person. There will always be people with bad attitudes. I just feel sorry for them. I know there is nothing wrong with me because of that. I am not perfect and have my issues sometimes, but the ostomy isn't one of them! If a man meets me but can't deal with it, I just feel sorry for him too. He obviously isn't strong enough or real man enough to know a good woman who has dealt with her issues and survived. The rejection will sting. It always does no matter what, but for not for long. Have a good cry or whatever gets it out of your system, then move on. That was long winded so apologies for that. I just wanted to say that acceptance is possible, normal lives is our right to demand and wish you and the others who responded long, good and normal lives.
Reply by bremen313, on Thu Jul 12, 2018 12:56 pm
I just saw the spell check attempts at certain words. It was c.h.r.o.n.'s disease that I had. sorry.
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