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
MeetAnOstoMate is a remarkable community of 41,451 members.
“I mostly read and still feel like I belong.”
“Doctors took notes; they want others to find this website.”
“From midnight blowouts to big wins, there’s always a hand to hold.”
In both of my cases, I had no choice. It was surgery or be put 6 feet under! I thank God that He has been with me all these times. Without Him, I never would have known what to do and might not have gone to the hospital when I did. I don't know if you have had your surgery or not yet but I hope you will hang out on this website when you are done. I have learned a great deal through the people here and it is so great having others who have had the same thing done and been through what you are about to or have gone through. The only thing I have turned down is a reversal of the ileostomy. When the doctors did the emergency rebuilding of my original ileostomy this last February, I told them I did not want to go through this again. My doctor told me at that time that I was no longer a candidate for the reversal. In a way, I was very relieved. The last three years of my life have been a nightmare for me. I do not want to go through any of it again. If you wish to be rehooked up and they say you are a good choice for that, research it carefully. Every surgery I have ever had except for Old and New Maxine and the emergency surgery on my broken foot, I have spent weeks researching. I recently had my C5 C6 disk in my neck replaced with an artificial one. I went to my pre-op with 2 pages of questions for the doctor. I knew everything that they were going to do and could talk intelligently with them. I always try to research my adversaries! Don't cancel your surgery. It is nice not to have to suffer any longer with horrible pain. We all had to change a few things around when we had our surgeries but in the long run, most of us are glad we did it. I know I am. Good luck to you!
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...
Learn how convex skin barriers work and what benefits they offer.
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
Stories of Living Life to the Fullest from Ostomy Advocates I Hollister
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