What is the Worst Part of Working with IBS?

By HessP

1 min read

When it comes to working with IBS, it’s not easy to perform because negative symptoms can kick in at any moment. As an IBS sufferer, what do you think is the worst part about working with IBS? Let’s try not to be negative or pessimistic, but instead raise awareness about our suffering in hopes to create changes in the workplace so that IBS sufferers can be properly accommodated. Please share your responses below!

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ducky1776 Member
I had to quit my job after a 10-month siege of IBS-D. I was weak, I couldn't remember what I was supposed to do and my stress level was off the chart. I'd lost 40 pounds and nothing was working to get it under control. My boss tried to be understanding, but I couldn't do the job. We suspect now that this also led to a small stroke. I was already confused, so it was hard to tell at the time.
1. Kelly Dabel, RD Community Admin
 Sorry to hear that you had to leave your job ducky1776. Sounds like you went through a lot. How are you doing now? Is it in better control. Wishing you some relief soon. Really appreciate you sharing your story and being part of our community! Best, Kelly, <a href='https://irritablebowelsyndrome.net' target='_blank'>Irritablebowelsyndrome.net</a> Team Member
rosie Member
I the space bar doesn’t work with this text box.
1. Kelly Dabel, RD Community Admin
 Sorry you were having trouble typing here Rosie. Please feel free to give it another try. We look forward to hearing your thoughts on this article. Kelly, <a href='https://irritablebowelsyndrome.net' target='_blank'>Irritablebowelsyndrome.net</a> Team Member
rosie Member
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judyvan Member
The worries about diarrhea accidents have been the worst. I determined years ago that it wasn't going to limit me from going about my life. I used to keep extra clothing in the car and extra underwear in my purse. I sit on the end of the row in church and stand on the end in choir. I used to always have a small bag with me when I traveled with others, but I now have a plastic bag with a pair of dark slacks and clean underwear with me in my regular sized purse. We have a porta potty in the car when we're traveling where the bathrooms are far between. The biggest change I made about 9 months ago was wearing adult pull-ups when I'm out of the house. No matter what, the gathers in the diaper always catch the mess. It was a little demeaning at first, but it buys a lot of peace of mind. So, I don't know, was this positive enough? Staying home and not getting out is pretty awful. Tomorrow I'm leaving on a 2 week vacation to Mexico. It's the first time I've taken diapers through Customs. I'll just smile at the agent. 😀
1. Kelly Dabel, RD Community Admin
 Thank you for sharing your story JudyVan! I can hear your positivity as you strive to chase after the life you want. Bravo! Sounds like you have some great strategies in place to ease your mind and enable you to be out and about. I hope you have a fabulous vacation in Mexico! We appreciate you sharing and know that others here will be encouraged by your spirit and determination. Best, Kelly, <a href='https://irritablebowelsyndrome.net' target='_blank'>Irritablebowelsyndrome.net</a> Team Member
grandmayo Member
Wow, JudyVan, I worry about those inevitable accidents too and handle it exactly like you, including the pull up adult diapers. Unfortunately, what gathers in the diaper needs immediate attention because of odors and, worse of all, potential to spawn a UTI. I was "retired" in 2016 as a result of the ongoing interruptions at my job (my backups complained and someone actually took pictures of an empty lobby). All my embarrassing and humbling experiences have helped me to become a more understanding and compassionate person and I work with several outreach ministries to show that.
theran Member
Where to begin. The first thing I want to say to all who see this is don't settle for the way it is now. Trust me, I'm just like you. I have been to multiple doctors, numerous tests. It's frustrating when you're hoping they find something and the don't. It's even more frustrating when you hear this is just the way it is going to be and you have to learn how to manage it. I believe in cause and effect. There is something that caused your IBS right? That means there is a cure. If I would of accepted hearing, this is how your life is going to be now. I would have been dead. About 5 years ago my IBS got bad. I have 3 wonderful kids and a beautiful wife and this unfixable syndrome had me thinking I could never leave the house again. That's no way to live. Yes, I considered suicide. I didn't act on it but, started to seriously considering this as option B. To answer the original question. The worst part of working with IBS is knowing that is not a life threatening disease. Think about that for a minute. We suffer everyday. However, I have learned over the years that the squeaky wheel gets the grease. Another way to look at it is to go by what the former NFL player Deion Sanders use to say. "Follow the money". My Dad has Brain Cancer that is going to kill him. Same one as John McCain has. Glioblastoma. Cause this is a life threatening disease, they bring you into the state of the art hospitals, give you a concierge service, suck up to you not because you're dying, because they have money pouring in from everywhere trying to come up with a cure. Money that goes to clinical trials. Millions of dollars for clinical trials with a hope that is increases your life about 20% more. That's it. 20% more life expectancy. Not 20% more quality life, just 20% more survival. They give you attention cause they want you involved in the clinical trials cause that is where the money is. No money, no trials. At least they are trying. So where is the money in IBS? In the cure or in treating the symptoms? Imodium makes money on IBS sufferers. Medications companies make millions on IBS sufferers. Where is the money in the cure? There is no money in the cure, and you are not dying, so the only grease your squeaky wheel is going to get, is in treating the symptoms. I have a Gastro doctor who won't do another thing for me but listen. Once a year when I'm eligible by my insurance for another Colonoscopy, guess what he suggests we should do? I want to say in a few closing remarks, I decided to fight back. I will tell you there are days & weeks I feel like giving up. What keeps me going is this. The more I research, the more I ask questions, the more I read these posts on web-sites, the more I find pieces to this mystery puzzle that can lead to a cure. I can honestly sit here and say when I read things like have to have a portable potty in your vehicle and take clothes with me everywhere I go. Breaks my heart. My IBS is not that bad. It was and because I fought back, insisted on testing. I'm not leaving any stone unturned. Because I'm this stubborn, I have made huge improvements with my IBS. I have moved the needle. I guarantee you I have increased the quality of my life and my IBS symptoms more than 20%. I'm twice as better than I was 5 years ago. Matter of fact I just got a test result back that could be a huge game changer for me. Something I found on the internet and requested the test. This could make me about 90% better if the treatment I need to do works. Since I already have a long enough post, I don't want to take up a whole page. I would be more than happy to share what tests and procedures, medications, that have helped me to this point. The gut is complicated. Every gut issues has the same symptoms for the most part. The easy and wide diagnosis to doctors is just label it IBS. I won't accept this. There are stones that you need to look at. If you reply to this, I will gladly share my email so we can talk. Your not alone, we need more squeak in our wheels not to treat symptoms but to find a CURE! If we get loud enough, then we can't get ignored. Thanks for reading and listening to my vent. Good luck, keep fighting & praying for a cure. Most importantly keep your eyes & ears open to any stone that looks like it is worth looking into.
1. HessP Member
 Thank you for your wonderful encouragement TheRan! Truly appreciate you sharing your perspective and journey on dealing with this horrible condition. IBS is truly a complicated disease and to hear about your tenacity to improve your health and quality of life is very inspiring. It's great to see fellow sufferers put up a great fight against their disease, even though it may be extremely difficult at times. We'd love to hear more from you, so please feel free to share your story or vent anytime. Here is the link to share more of your story, if/when interested: <a href='https://irritablebowelsyndrome.net/stories' target='_blank'>https://irritablebowelsyndrome.net/stories/</a> . Thank you for taking the time to comment on my video and also for being a part of the IBS community! Stay positive and stay strong! Best, Hess (IrritableBowelSyndrome.net Team)
2. donnerdarm Member
 I can relate to you! My personal history began in my senior year of high school (I was 18yo) when I had two VERY embarrassing public diarrhoea accidents, firstly in my elective third period class of World History, then about two or three months later that same semester. I was after my second attack that happened during my phys-ed class on the track and field as we were doing the 50 m hurdles, I was wearing my blue and persimmon (orange) trim gym shorts and T-shirt when a very embarrassing attack of diarrhoea that went everywhere! I veered to the left and left the track and headed for the gym building to ‘finish my business’ and to clean myself off. I was subsequently ‘shuttled’ from doctor to doctor (many of them being gastroenterologists) and they could find absolutely nothing wrong! One even accused me of maligning (faking) the whole incident of the track and field)! I was pissed at that! Weel, I was first diagnosed with having Coeliac Disease, then Crohn’s then finally IBS-D. Then subsequently FD (a part of the newly found class of disorders called functional gastrointestinal disorders (FGD) that is diarrhoea without known aetiology (cause). Then it was suggested that I might have collagenous colitis (a microscopic colitis infection). So now I am working on these three fronts. The same symptom, recurrent diarrhoea that is urgent and sudden thus causing sometimes very embarrassing public accidents. Thus I too, cannot receive concrete answers as I might be sattled with one of three (3) different possible disorders all with essentially the same primary symptom of frequent episodes of diarrhoea. Today, a decade later, I still have no concrete answer as it seems to vacillate between IBS-D, recurrent functional diarrhoea, and collagenous colitis (a microscopic colitis, not the more serious ulcerative colitis, though both are still classified as IBD). It’s an ongoing nightmare! One would surely think with all the medical technology available today, a correct diagnose can finally be made! Well, apparently not here! So, I plot on – with annoying recurrent diarrhoea episodes!
donnerdarm Member
My Primary concern is the urgency issue. When I first experienced all this in my last year of high school (18yo) I had some very embarrassing and (needless to say) unexpected public diarrhoea accidents that drew the 'shock and awe' aspect with many exeballs focused upon me (both from my Peers and the school staff)! I have had fewer public embarrassments since than before as I have learned the 'subtle nuances' of an impending attacks. But nevertheless I have still experienced some public accidents. It is the worst feeling on the planet of being in the limelight of a public diarrhoea mess! Makes me feel like some frail old fart that 'can't hold their bowels. I know that isn't the case as indeed I am still considered young (2😎 and thus have excellent bowel muscle tone. But it is that one element of unexpected surprise coupled together with that urgency and also not knowing just where the closest loos or cottages would be that can of course lead to potential embarrassments. NO fun!
1. donnerdarm Member
 Typo, eyeballs (not exeballs)!
2. HessP Member
 I'm so sorry to hear about your experience in high school, Donnerdarm! Many of us IBS sufferers can certainly relate so please know you are not alone! The urgency coupled with an unexpected surprise is definitely NO fun at all, and is an unfortunate aspect that many of us have to live with. However, what's important is that we continue to do our best in managing our symptoms and leading a healthy lifestyle so that we don't make it easy for our symptoms to get triggered. Please know we're always here for support and thank you so much for sharing with us! Stay strong and positive! Best, Hess, <a href='https://irritablebowelsyndrome.net' target='_blank'>IrritableBowelSyndrome.net</a> Team Member
donnerdarm Member
One Suggestion in regard to space bar issues. I ran into the same problem. What I do is C&P (copy and paste) to Word, and space all the words apart. Then from Word, I again C&P back to the box on the IBS site and it seems to work (thus far) flawlessly. Just a Suggestion.
holly5757 Member
The worst part for me is when a flare hits really hard I have had to call in sick. I look like a horrible employee because of my attendance. Most people when you tell them you have IBS, they laugh it off as if its just you having to go poop more often. They do not get that there is quite a bit of pain and suffering that go along with it.
1. HessP Member
 I'm so sorry to hear that, Holly5757! Please know you are not alone, and many of us IBS sufferers can relate! You are right that a lot of people don't fully understand our condition, which is why its so important to keep raising awareness. Thank you for taking the time to share with us and keep staying strong! Best, Hess (IrritableBowelSyndrome.net Team member)