Hi
I got my ileostomy January 26, 2012. My emotions are going up and down like a yoyo.
Happy and relieved one minute, scared and frustrated the next minute. I am assuming that this is all quite normal. I suffered with colitis for quite a few years and had known for the past year and a half that I was going to have to have an ileostomy, but this did not make it any easier. There is not a lot of information given to people about this. I was given 5 visits of home care to help with appliance changes. I was given 40 minutes of instruction before I left the hospital. Both the ET nurse and my doctor are about an hour and a half away.
I am sure all of this will pass in time. I have checked this site out a little and from that realized I was not alone and you people had all gone through what I was going and possibly anything I would be going through, and thought this is a good place for me to be. I am lucky I have a very supportive wife and grown family.
Thanks, Ed
Ed, lots of us have suffered from years of colitis and have now learned to manage our ileostomies. It looks like you have received plenty of instruction and support visits. You will find that the quality of your life will improve dramatically and that this is definitely a good place for you to be. Welcome, and all the best to you. PB
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Well, I hit the two year mark. I went back and read my posts from when I first found this site. I was very fortunate in that I stumbled upon it only 4 weeks post op. I have said many times that this community really saved me. The first 2 weeks after my surgery I shut down completely. It wasn't until about the 3rd week that my son came in to my room, flicked on the light and told me I was going to have to get back to living because I was scaring him. I had fallen into such a depression. He ticked me off, but it also made me stop and think- what was I going to do? Feel sorry for myself and sulk, or be grateful I was alive.
I've re-read my journals from that time and it was after my son kicked my butt, so to speak, I took an honest inventory and had to dig deeper than I've ever had to. I mean, I had survived a pretty nasty divorce, after a pretty crappy marriage and that was tough. But this was different. I felt like I was now a handicapped person who would be limited in their life and be looked at as a freak. My mental state was precarious, at best.
But then I found this site. I just lurked a bit before posting. I read so many of the other stories and I started to see just how full my life can be, I was not handicapped, and certainly not a freak! The stories of survival, the sense of humor, the support and compassion was inspiring. It was then I made myself get out of the dark, and get my sh*t together.
Not all rainbows and sunshine at first, hardly! But with grace from myself - to myself, and the kindness and willingness of the folks here to be supportive, non judgemental and openly share intimate details about their life circumstances, l not only survived but thrived.
I think of all the years I had suffered with such extreme pain, barely functioning, and the many hospital stays and how that is all behind me now. (All fingers, toes, and legs crossed that I never have to go near a hospital for myself ever again. I think I'd rather have a fork stuck in my eye. I loathe every about them.)
So, to everyone who has been a part of this journey with me, to say thank you is not enough. I'm forever grateful to know you all. My Angels, each one of you.
And as the Grateful Dead famously said,
"what a long strange trip it's been!"
Im so happy I'm tripping with you all.
Hi, you're in the right place to be if you have any fears. Then this is the place to post them. There is always someone to lend a helping hand and advise. Your emotions will be up and down, and all sorts of feelings come and go. Mine was intense crying. There wasn't a site like this when I had mine. I wished there had been, but I felt really alone. So feel free to ask for any advice, and welcome to the site. Take care, ambies...
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Welcome, DD.
And thank you for your replies. I think I reached a spot where everything had caught up to me. I realize this sounds weird. I had UC for the past 15 years or longer. I had been on all the different medications and had been through the doctors and their referrals to different doctors.
I am not complaining as I realize everybody on this site has been through the same and worse.
2011 beat the crap out of me. I had bladder cancer removed 3 times and I had cysts removed 2. On Oct 13, I was told I had colon cancer and that my doctor suggested removal of the colon, hence the conversation I am having now. I worked right up to the day before I was admitted to the hospital. My wife, our kids, daughter-in-law, and grandchildren have been really supportive through all this. I have started getting out a little bit, going for walks and going for drives. I am starting to trust my appliance. I am not really sure whether I like it or not, but I am not clenching all the time and being terrified I am going to poop my pants.
I think once I can get back to working on my Mustang (hence Fox Body), things might be okay.
Thanks, Ed
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Yep! You have the right idea... get back to the Mustang. The ostomy is an adjustment but then so is the ulcerative colitis. With 15 years of that essentially behind you, lots of things will open up for you.
I have UC. I have had it since 1963. Now a doctor wants to remove it and I don't want it removed. I know I should, but it's hard to make a decision when you feel good. But sooner or later, cancer will probably set in. I'm not afraid of the surgery, just the adjustment. So, I need advice.
Your emotions are so common. I'd worry if you didn't initially have them. I'm sure you've heard this hundreds of times but you will feel heaps better both physically and mentally. Good luck!
My decision was made for me. I have been seeing my last doctor for about 2 years. I was referred to him because my other doctor was out of suggestions, so he referred me to this doctor.
I had spent the 2 months waiting for the appointment getting myself ready for the fact that I was going to have to have surgery. But when I saw him, he had reviewed my file and said if you want the surgery, that is fine, but we have 1 more option that would be Remicade. So, being I could always go back for surgery, I tried the Remicade for 1 and a half years. At that time, a scope was done to check me out. My UC was very active and I now had cancer in my colon.
I have had the surgery. I believe I had no more options. I had UC in my colon and my rectum.
This might not be the choice for everyone, but it was the choice for me. I see my doctor on March 9 for my 6-week follow-up from surgery. My UC over the last 5 years was really bad. I did continue to work, but I suffered daily. I always had extra clothes with me. It was getting to the point that that was all I was doing. I had no other activities. I was terrified to go anywhere or do anything. With my ileostomy, my physical and mental being is getting better. It will be slow going, but I think it was a good choice for me.
Ed