Managing Work with a Colostomy - Experiences with Ill Health Retirement?

Hi all,

Has anyone had to take ill health retirement from work due to their condition? What was your experience? I am increasingly finding it difficult to cope with the problems in having a colostomy.

Since you have no replies, I'll give my thoughts. I had my original operation in 1999. I went right back to work in 6 weeks. It was very hard to manage at first, but with time, I learned to juggle work and my colostomy. I worked up until about a year ago, but since my job was very hard with lots of lifting, I developed a rather large hernia. I put off the repair until the hernia got so large that it started causing me problems. I had it repaired, and the surgeon said I would have to "change my lifestyle" or it would come back in time. I asked if he would support a disability claim based on this info, and he said sure. Since I am now getting older, I decided to take his advice and retired for medical reasons. Unless you have a very physical job, you should be able to work as long as you desire. You will learn in time to manage. Good luck.

No, I'm still working but what kind of problems are you having, maybe if you're more specific we could help?

I have just had a repair done to a parastomal hernia which has left me with a fistula. The fistula is healing nicely but the whole experience has left me with a very uneven surface so I don't get a good seal on my bags. I have problems with odor, pancaking, and leakages. I've tried irrigating but I feel exhausted after. Poor self-esteem and stress at work means that I am very low. I am in a managerial position so I have to attend meetings. Wow, it can be very embarrassing! I have struggled with a hernia for 8 years and having it repaired has caused other problems, quite frankly I have had enough. I have lost all my self-confidence and worth and find every day a struggle. I know in my heart that I cannot carry on. I work in a social care setting and am responsible for the care of others. It's hard trying to sort out other people's problems when you have your own. Thanks in advance.

Oh Shoobabaloo,

Have you tried all the different products on the market to help with the uneven surface? There has to be something that will work for you! Many manufacturers will send you free samples in hopes of you finding one that works for you and they will get your business.

Odor can be somewhat controlled by the things we eat and there are products you can put into your bag as well to help with both pancaking and odor. There are also drops to put into the toilet to contain the odor while you change your bag or rinse it out depending on your preference. I think if you get a good seal you can eliminate the leakage too. I have also heard of a tablet you can chew to help with odor.

Make sure you are washing with a soap that has NO lotions or oils which will keep your bag from sticking to your skin.

Don't give in, so many have had these issues and have found ways of getting through them and you can too. What about going to a support group? I have heard many say they meet wonderful people who have told what they do and use to help with issues.

I can't imagine coming so far only to give in now, I know it's not easy, we all have our issues but when you find the right products you will hardly notice your bag most of the day.

Search the forum, you will find lots of great ideas and information on products and how they helped others with the same issues you're having.

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

Thanks, Mrs. A, for your kind and supportive reply. I am extremely low at the moment as nothing is going right. I have had to deal with the psychological difficulties since I got my stoma. My whole life revolves around it. Work is difficult because I am responsible for helping and supporting individuals with problems. This is so hard when you have problems of your own. I have great support from my stoma nurse, but I'm the sort of person that gets on with it and gives an air of coping when deep down I am not. xx I trudge on daily!

I feel your pain. I read your reasons and I am having some of the same issues. First, I am a high school teacher and I am having trouble with things happening during class. I cannot leave the students with no supervision so I either have to call an admin (they are busy doing their own jobs) or wait, which is what I usually do. As you might imagine, this is stressful as I know this increases the chances of leaks. I have had the wafer leak twice, but luckily at home. I don't want that happening in class.  

I posted here a while back and many suggested "irrigation." If you have a colostomy this might work for you too. I am going to try it. I have all the supplies and have watched videos but have not tried because I just had yet another surgery. I too developed a fistula sometime after colostomy surgery. It is apparently because of scar tissue developed from my very first surgery which removed the cancer tumor in my rectum (They thought T1 tumor and removal was all I needed, but T2 and colostomy was needed). Anyways the fistula surgery wasn't completely successful because the vaginal opening that was stitched didn't hold and now I have two openings that need to heal from the inside out.  Therefore, that has been where my focus has been the last couple of weeks.

I have considered talking to my doc about retiring early or going on disability, but I love my job. I am hoping this irrigation will help. As it turns out with all the surgery issues, the fistula, the non-healed rectal opening, etc., my doc took me out of work until the end of the school year. I am already missing my students! I'm hoping to return in the fall

Hi Carol,

Thanks for your reply. A lot has happened since I posted on here. I did, in fact, retire and to be honest, I am not missing work as I had an extremely stressful job. I did irrigate when I first had my bowel surgery in 2008, but unfortunately, due to a sizable hernia, this had to be put on hold as it changed the shape of my bowel so getting water in became problematic. I can, however, inform you that following a hernia repair and my fistula healing, I am back irrigating and despite it making me feel somewhat nauseous, I persevere as this allows me to control my bowel rather than it controlling me, so I highly recommend it. I'm happy to offer you advice if you need it. Irrigation allows me to be 'clean' for approximately 2-3 days. Everyone is different. It's having a go and finding out for yourself. Once you are into it, your confidence will increase as you become 'in charge', so to speak. As for my emotional state, I still have self-esteem issues, which is a challenge daily, but I think I am no different from anyone else who has had to go through and cope daily with a stoma. It is still one day at a time.

Hello.

Glad to hear you are enjoying retirement and have been able to get back to irrigation. In this post, you say you experience nausea. I am experiencing a lot of stomach pain. Other than that, I was having success with irrigation, but then last week I started getting output every day. I do not know what is causing it. It's as if I have to start over training myself. The only thing I can think of is I have been eating out a bit more as it is graduation week. I still eat small amounts and try to eat things that don't normally run through me, but still it is. I did raise the water temperature to body temperature (98.6) as I have been told on here before. I wasn't taking the temperature and when I did, I realized I was using cooler water. I don't know if that could be contributing. I am hoping you or someone else might have some suggestions so I can learn to steer away next time. I am still irrigating every 24 hours and with these new developments, I don't think I will be changing that anytime soon. I have not given up hope for this process. I really want it to work so I can teach. Thank you.