Tips for Dealing with Work Issues

Could I have some tips about how to deal with things at work? Things like cramp, and where to put soiled things, and odor. I would be really grateful. - Meg

Hello Meg. You don't say where it is that you have cramp! This is something that can have numerous causes so it would be good to try to establish that before you look to do something about it. As for all things workwise I found that approaching the manager with an open and honest account of my needs proved to be the most practical solution to nearly all of the problems I have faced in the work situation. They adapted toilets, provided clinical-waste bins for pads and bags and allowed me time to cater for the necessary functions.  In short, anything I asked for they provided.

I don't know what the law is the the USA but here in the UK employers are obliged to employ a percentage of disabled people and cater for their needs. I don't like to see myself as 'disabled' but having the document to say that I have been assessed as such opens up the possibilities to exert leverage to get things change for the benefit of everyone. (not that this was necessary in my case)  Remember that if you are asking for something to assist you, you are probably asking on behalf of several other people as well, who perhaps are too shy to ask.  Try writing down a list of thngs you need so that you don't forget and consequently keep having to go back and ask again.



Since changing my job I now work at day centres.  These places are ideal if you have this type of problem as they are practically and philosophically geared up to assist their clients in every possible way. I can now just 'borrow' their facilities as and when necessary and everyone is very understanding and willing to help in any way they can.

Best wishes Bill

Wow Bill - maybe I should have moved to the UK. When I asked my employer (a major oilfield-based corporation) for help in assisting my needs with newly diagnosed Myasthenia Gravis (autoimmune disease), they said it would not be in the best interest of the company to do so. I became even more ill trying to keep up my normal duties and finally ended up retiring due to illness - this was after 32 years of service. People don't mean much here in the states - we are all disposable. I know for sure it would have been twice as difficult if I'd still been working when I had my colostomy.

Good luck Meg - hope your company is more compassionate than mine. I actually call them the Ant-Christ Corp.

Judi

Highlander,

I guess it has to do with the type of job you have and how many and how close you are engaged with your coworkers. For me, noise is the biggest concern. I have weekly meetings with 25 other people in a single room where each of my neighbors is practically sitting on my lap. In this case, I make sure that I avoid eating certain foods the night before that I know will cause the noise. Also, I refrain from eating and drinking anything before or during the meeting. This can be tough because the meetings are always in the morning and they always serve coffee, donuts, and bagels throughout. You should have access to a bathroom, and most businesses and certainly public buildings here in the US have to adhere to the ADA to accommodate the needs of those who have special needs. I always carry a complete change of ostomy materials just in case of an accident. The odor is something else that seemingly can pop up anytime. In that case, you would have to make your way to the bathroom. For soiled materials, which I have rarely encountered on the job, I carry both a small paper bag and a small plastic bag. I put the stuff in the paper bag and then wrap it tightly in the plastic one. Good luck.

X_

Thanks so much, this is my first job in a while. I do like you and do not eat or drink as far as I can, like you say it is tough, but I do worry about odor when I am confined in a small room. -M

Living with Your Ostomy | Hollister

Devrom internal deodorant tablets are the greatest discovery I have made. They get rid of almost all the odor and I don't have to worry about being so embarrassed about that.

Wow - I'm having an odor problem right now. Keep putting tape over the vent. Where do you get Devrom?

Judi

My work has been great. I use the disabled toilet, where they have put a locker for my supplies, and a company provides and collects special waste bins. So I just use my normal disposable bags.

I have had an ileostomy for 46 years. I can relate to your fears and experiences working and playing in public places. I wish we could have here what the UK has, but since we don't, we always just assess our surroundings and make use of it. I never told my employers/bosses for a number of reasons. I was concerned about health insurance (at least in the later days of my employment). Secondly, I did not feel it was any of their business really! I have learned a few tricks of the trade over the years. When you are in a public restroom using the toilet, put some toilet paper down in the toilet first before emptying your bag. It silences the sounds. I used to have a lot of air/gas build up in my bag. It was especially difficult when I wore pantyhose, which was most of the time. I would cut a hole with scissors in the pantyhose around the area of your ostomy bag. I could get several wears and washes of my hose before they would run if you wash by hand. When I could tell my bag was full of air, I would make it to the restroom as soon as I could. I would try to hide the puffy look beginning to show by finding something I could hold over my abdomen, i.e. a purse, a sweater/coat, papers, file folders. You can get real creative when you have to. Have I had my appliance come up and have to tape it down - absolutely - more so the first few years of wear. You don't want to leave it taped down too long of a time as your skin will get real red and sore. It seemed after that I got better at applying my appliance, and it also took a while (I think) for my skin to adjust to this foreign object (ha). I would awake at night with an appliance that came up - a mess all over. It's like up in the middle of the night with a baby - you just do it and make the best of it. If you wear a one-piece appliance, you cannot change the bag without changing the whole appliance; therefore, I get the two-piece. It seems odor issues improve if you can change your bag during the wear time of your appliance. The items available now are so more advanced than when I first had my surgery. I use a Convatec wafer, but before applying it, I use an Eakin Seal cohesive ring that I put over the stoma onto the skin. It is flexible and can shape it to fit your stoma size. Everyone's stomas are different shapes and sizes. Anyway, the short and long of this story is you get greater protection with a leakage, longer wear, and peace of mind. If you have an ostomy support group in your area, I recommend you attend. Not only do you meet some wonderful people, but there is so much you can learn from other people like ourselves. I hope I help in some way. If I can answer any questions for you, please feel free. We are all there for you.

C.

Thanks so much, Bill. These are all good points. Are they really obliged to employ a certain percentage of "disabled people"? I will have to look that up; that is interesting to me. I am originally from the UK but have lived in Florida for twenty years or so. Thanks for the information. - Meg

Thanks so much, Judy, for posting. I am originally from the UK, and I did think as I was reading Bill's post that perhaps people are more altruistic there, even if it is by law. I did not want to say that as I am a guest in your country, and it sounded ungrateful. I have even seen diabetics being hustled out the door. I was thinking I might try and find something where I could work at home, might be for the best. Thanks for your experience. - Meg

Judi, you get it by mail, either from eBay or from the company. Several health supplement sites have it too. It does mask the odor, but for me, it replaces it with a different type of odor, like burned paper...ha ha. It is about fifteen dollars.

Mountain Mermaid, yes that helps, at least I know I am not the only one. I have a good purse which is a bucket style and has a separate compartment on the bottom with a zipper all the way around. I keep my stuff in that so I don't go in for my wallet and come out with a pad! I have also adopted that Bohemian style of dress. I thought I was the only one with that as well! Now every time I see someone dressed like that I will wonder if they are like me! Thanks so much for the reply, I am thinking it might be best for me to figure out a way to work at home.

Queen Mum: These are all good tips. Thanks for taking the time to reply to me.

Mouthwash does an excellent, cheap job of masking the odor. Baby oil helps evacuate the bag.
Ed

Hi Ed, I also use the baby oil in the pouch but heard from my stoma nurse that the oil is not good for wafers? What have you heard about the baby oil. I only get 2 days on a wafer with my ileostomy. But it sure works well for getting the bag empty. Take care. Rod

I used to use the Eakin ring, but now I use Coloplast 2mm rings. They are cheaper and don't make as much of a mess. I also use Coloplast Brava elastic tape, which costs $32 for 20. Then, as appropriate, I use various forms of medical or athletic tape. After a week, I change the flange, otherwise the skin gets too irritated. So, if the baby oil is a problem for the wafer, I haven't encountered it. I had a period during the summer of less than a week, otherwise I can make it last more than a week. It's all about experimentation. I posted quite an extensive post elsewhere.

Ed

Thanks so much for the reply. The job did not work out. I must try to find something working at home, I guess. Mouthwash, eh? How do I use that? I am guessing not in the regular way. :)

Love those Brava half moon tapes. Get an easy week with them. What paste do you use?

There's no reason not to do what you want. Do what you love and you'll always love what you do. Control your stoma, don't let it control you. Control what you eat, when you eat, then you can get to the point of realizing you can control your body or what's left of it. I can, you can.

Yes, I have developed a thick skin. But what do you do when people talk about you to your face in a group and spray air freshener in your face. It is not that I don't take care, but after a few hours, I imagine there is some kind of odor. And it can be a lonely life. I have a good job but am apprehensive about the future and working. Thanks so much for replying. I do appreciate it.

For odor... mouthwash is a very good tip!! I also use 2 or 3 Tic Tac breath mints, just drop them in your pouch. The white ones LOL!! You're usually the first person to detect any odors, so when you do, a couple drops of your perfume (after shave in my case) on the outside of your clothing will mask it for a while. After all you've been through... Don't be apprehensive... Be confident!! Keep your chin up!!

If somebody would be so crude as to say something derogatory in public, then the best defense is to attack. Didn't your mother teach you any manners?
Try to spray air freshener into my face and you can expect a punch in the face. He/she attacked me (using air freshener), so I defended myself.
I am still the same person (maybe more obnoxious due to age), and while I have had some guys hide their face in their sweater while we were in the washroom, they accept that the smell is more pungent due to the ileostomy. And I explain that I can go to the washroom while standing up.

Ed

Yes, that really happened and more than once, and in a hospital where I was working! If I was not a contractor there, as opposed to an employee, I would have taped the conversations and taken the matter to a lawyer. I am thinking maybe I should take someone like you along to settle the matter there and then - lol - M

I'm afraid there are many obnoxious assholes in this world and I agree with Ed, attack instantly, in my case I'd be willing to bet the person who would make that kind of insult to me would hear a form of cursing and profound attack they would think twice about ever doing such an ignorant thing again. It's bad enough putting up with the battle we went through to land in this position and then have some twit comment, OK, now its my turn, I suggest you place your hands over your crotch, get it? Ed

No one is going to win a pissing contest with a skunk, High. So, why don't you just make an appointment with the hospital's CEO, explain these incidents, and ask him or her if this type of behavior represents the core values of the hospital. Your role as a contractor does not mean you must tolerate a truly hostile work environment. Good luck, and don't let the bastards get you down.
    PB

I thought about taking it to the boss or further, but we worked hard to get into that hospital (collecting research). It would have meant I would have had to be laid off. I am going back to work and will be traveling up and down the East Coast. I hope it will go well. But first and foremost, I have a lot of gratitude that I am still alive. I had a very high-grade cancer. I am also proud of the fact that I am trying to earn a living and make my own way in spite of everything. We all know here that it is not easy. And so, I feel above all of the hurt. -M

That's one assumption you cannot reasonably make in these days of political correctness. I imagine that the culprit (1) would at least be on the hospital's radar, (2) may have to attend sensitivity training, and (3) may not be all that popular with colleagues who witnessed the abuse. There should be zero tolerance for this kind of abuse. Higher ups are now held accountable for the miscreant behavior of subordinates. Just ask Chris Christie. Hit them where it hurts...them, not yourself.
    PN

You could tell them to go and indulge in self-fornication. Or go forth and multiply.
As a last resort, warn them that you have a bag full of different options.

Ed

You would not believe how thick a skin I have. I really feel above it all. Nothing like having your body cut up to put life in perspective.