Adjusting to Life with My "New Accessory" After Ileostomy

I had my ileostomy four weeks ago and was doing fine at first. I had suffered with UC for just over a year and had been on and off steroids for most of that time. I had also tried azathioprine amongst others and then finally it all got too much and I was admitted to hospital. I was told I needed to have an ileostomy and I cried. But the silly thing was, it was tears of joy, I had been in terrible pain, and was fed up with planning my life around going to the toilet. I didn't realize UC could control you so much. I felt that if I had the op then at least once I'd recovered I could live a normal life. I know people who have had it done and said they have no regrets and I don't either.

The thing is, after the op, despite being in pain, I was so relieved it was all over, I'd start to get better, and I knew over time I could eat more normally again. After being home for three weeks I've started to feel much better and in less pain from the op. I've even had a very short walk to the shop at the end of the road (just a few meters away) yet now it seems to have hit me. Now I seem to have lost confidence slightly and yet I thought I'd be more positive than ever. I had to empty my 'accessory' in a public toilet the other day and cried afterwards....why?!?! It's not like anyone knew what I was doing!?!?

I knew that there was no way I could go on being as ill as I was, and I knew that once I was fully recovered I could go back to doing all the things I loved, but I wasn't really prepared for the bit in the middle! For no apparent reason I cry, things that didn't bother me around the home now do and I'm sure it's just frustration because I'm so close to being better but it's driving me mad.

I decided that I didn't really like using the term 'bag' or 'pouch' so I refer to it as my 'new accessory'. To cheer myself up I had some colored material covers made for it which means that I color coordinate! Not that anyone knows because they can't see it under what I'm wearing but it made me feel better!

I guess after all this going on, what I need to know is, is it normal to have off days, to cry for no reason and to get worked up over things that you normally wouldn't?? I've tried to be so positive about this, but am finding it all a bit difficult now.

With best wishes to you all....Mrs O xx

Hi Mrs. O, yes it's normal to have those feelings. They say there are four stages you go through after surgery: anger, denial, depression, and acceptance. I've had my ileo for about 26 years now, and I know I've been through all those stages at different times. Hang in there, it will get better. Take care, Ron.

Hi there Mrs. O, and welcome along to the site. As a relatively new member myself, I can totally sympathize with you. I had a surprise colostomy in February last. I went through most of those stages, but came to acceptance rather quickly when my consultant told me how lucky I was. I still do have those off days, but thankfully they're becoming less frequent. Having a resource like meetanostomate.com is wonderful as you can read so many blogs by people going through similar ups and downs as yourself. It's heartening to read that you're not the only one going through this and you're not losing your mind. So please take heart and hang in there. Only months down the line and I thank God for feeling so good! Never be afraid to ask... it will make you feel better even to share your concerns or worries. So well done on making it through and you're not alone in feeling like you do. Stay strong! Colm

Mrs. O, I too welcome you. You have entered the place to be. There will be compassion, laughter (at the jokes), well wishes, and even some tears, mostly happy ones. There are some souls that have been on the bag for years and are chock-full of experience they will gladly share with you. Again, welcome. Jscksprat

Thank you all for your kind comments, they are much appreciated.

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Hello, Mrs. O - Wishing you the best. No one reacts the same after such pain, suffering, and then the miracle of good health. My late husband took such good care of me for years before my ileostomy. After surgery, he still cooked, cleaned, did laundry, and cared for me physically. Four years later, he died of lung cancer. We used Hospice care. I cared for him day and night also. When he died, I felt guilty that he had helped save my life but I couldn't make him better. Sounds like I was crazy, doesn't it? That was 21 years ago, but today I feel like crying.

MrsO, you're normal. I just had my 7th operation in June and I'm finally home recovering. I think with any operation, be it for heart surgery or an ostomy, your emotions are going to get out of whack. Give yourself time to heal and remember to take a few minutes during the day to just sit, close your eyes, and take yourself someplace calming and peaceful, take a few deep breaths, and relax. Things will get better and the emotional roller coaster you are on does come to an end. I have had my ostomy for 14 years and I still have my emotional days. More now since I'm fresh from another surgery, but it will pass. Think of the positive. You can eat again, pain is gone, you feel better. As for going in the public washrooms, put a piece of toilet paper down first in the toilet; this will prevent splashback. After I leave the stall, if anyone is in there when I emerge, I simply say, "Whew, someone must have had beans for dinner..." and the other person laughs or I don't say anything depending on if I get a look from them or not, usually not. Hang in there, things do get better and if you are feeling blue or down, come on here, do a post, and someone will have the words to lift your spirits again and put a smile on your face. I'm 99% sure Gutenberg, Mooza, and Primeboy will be the ones to crack a joke to help you through your emotional state; they have for me and I'm glad to have this site to turn to for that little lift I sometimes truly need. SharryToronto

Hi Mrs. O....and everyone else...I'm new to this lifestyle (and forum) myself. Not taking it badly myself as I am no longer in the pain I have been in for the last 12 years. Survived a blown-up colon and 3-month coma, so I feel sorta lucky at this point. Hopefully, I can learn something about all this from you people. This site was highly recommended to me by my doctor.

Wow, what a beautiful dress!!! In your pic. Yes, don't worry, things get really good, just be patient! I was in so much pain I thought it was the end. I survived and so will you. The human body is amazing, it adapts and reconfigures, lol!! It's true. You are on your way to being perfect again! I forget I have an ileostomy. I have had it since 2008, hang in there and don't worry, things will straighten out and you will be on the dance floor soon!! Dan