Severe IBS - how could I possibly go back to work?

Kia Ora and Hi everyone,

I live in New Zealand. I have suffered from IBS for a very, very long time. I don't remember when I didn't actually suffer from it. In recent years it all got worse. I am bloated, I regularly go to toilet, my body confuses me between diarrhea and constipation.

I've been trying so many sorts of treatments and diets but even when I thought that a given treatment succeeded in managing my situation, it eventually didn't.

Guys, I believe that i don't need to advise you here how hard this whole situation is, about the fluctuations in maintaining normal/healthy body mass and along with it severe fluctuations in the mood due to the pain and inconvenience. I'm a former head nurse (unfortunately, the IBS and later a brain tumour ceased any continuation working). I have a very broad academic knowledge in, and experience with the medical world. I had two Master's degrees in health, so I know, I believe, every treatment and diet, every medical screening and test. Yes, we are Kiwis, so the Australians are our closest neighbours and hence we obviously heard and practice herr the FODMAP diet (it all started in Australia). It didn't work. I needed to eliminate so many things out of my diet that i ended up with only a handful items I could eat.

Now, this is the issue my friends. I'm a dad of two gorgeous primary school kids. I'm in my early 40's and I have so much to give to the workforce, using my brain, rather than using my physical strength (as the latter is subject to the severe fluctuations in the IBS symptoms). I am keen to work but cannot believe that any employer would be willing to employ someone who may be spending more than ten times in toilet every working day. Let alone if I am really sick with smelly gases and pain. It's a burden and I have to admit that mentally I feel very bad. I struggle with myself that I have to be happy because I have a great family whom I love. But I'm keen to work. To be productive.

Anyone of you, mates, who can give me some good advice of how you cope with similar a situation and perhaps found a job that fits to such a severe IBS, I'm keen to hear from you.

13 Replies

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  • You might be one of those really unlucky ones who does just have to have such a small range of foods, especially if you did see improvement. As you know none of the diets are truly instant repairs, for some it can take weeks, months or if coeliac is diagnosed - years.

    Could you apply for a part time job within your chosen field and see how it goes? Or look for something which offers at least some homeworking. There might be an element of stress about the whole work situation fueling the ibs. Our world is driven by pressure to perform and produce and sometimes our bodies kick back and refuse.

  • Hi Liss,

    Thanks so much for the message.

    O wish I could apply for a part time in my profession. I cannot, unfortunately.

    I've been a professional in a psychological ward for years and am aware of the theory that stress may be one of those (probably) major contributors to the syndrome. My luck is that we live in New Zealand. The stress here gets a different character. All os very peaceful and quiet. Honestly, I wish everyone in the whole wide world would "suffer" from the tranquility we enjoy here. Apart from the macro facet, in the family all is just amazing. There is no tension between any family members. We do not struggle economically either.

    It is simply so many years of suffering without any noticeable stress factor. And this is exactly what bothers me in the big picture: the lack of probable stress factor.

    Did you manage to work from home? My wife tells me that I might want to explore working from home but I'm not sure what could be fitting to me. I simply want to be productive

  • Well #1 - do not give up. I have faced similar issues for over 20 years - I am also in my 40's and work every day and fight it every day. It will wear you down and make you hate everything. I have learned to live with it and hate the fact I need to daily. It has severely impacted my life, my social life and well everything. But I will not give into it. I have been able to balance my really bad days with working from home, but I also know that I am lucky when it comes to work. You cannot let yourself be embarrassed by it - everyone has issues and if they do not and judge you they will meet karma one day. I openly tell people that ask and educate people that do not understand. I have found that my issues have made me a very strong person compared to most and in turn the one day I beat this into submission I will be able to once again fully live my life. When that happens we will see...

  • Hi bburzycki,

    Thanks so much for your message.

    I totally see what you mean. I have never felt any judgement with my situation. Friends and everyone get the information at the first instance. I was a nurse for many years and never had any problem to talk and tell people all the "juicy " stories about the IBS. ☺Also in New Zealand we are very non-judgemental to one another and this is a bit easier to cope with such settings and environment.

    The issue is that my sumptoms could be so, so, so harsh that I may not even be able to work part time. I may most possibly call in sick more than double the sickness days allowed by the workplace. Been there and done that. It was horrible and that factor is major.

    What job would you recommend to do from home that i can actually feel that I'm contributing to the family economy? I have been trying surveys but as one might guess it is not really another salary in thr family.

  • Here is California many work from home. Our traffic is terrible and unproductive. Sales is one thing you can do from home. Web Design or any computer related items. You were a nurse - does your local medical services need assistance? Maybe you can find something locally that uses your expertise. In my day job I work with police and fire selling and building their vehicles and equipment. We have a shop and have to travel and chronic gut issues with travel and well anything is a huge challenge as you know. I try to fix things with meds only when absolutely needed as I am extremely sensitive to medications. I have no good days, some ok days and mostly terrible days that I just deal with either thinking I will explode with cramping and 6 other major symptoms, I really like the cold sweats and anxiety and immediate need to find a bathroom that is very helpful when talking to customers. Or even better the immediate need to find a bathroom 3 times in a row in 15 to 20 min..

    I have tried just about everything but probably the one thing that I really need to do more of and that is a real workout plan to lower stress. I think many of us that suffer from this have no idea how much subconscious stress we place ourselves under. We need to mitigate that better overall and thou working out really is not pleasant for my gut issues I think it helps my mind. I have tried anything I can to calm myself when having "an attack" from running the defroster to hot and then to freezing cold while driving and I cannot stop or find a place to stop to meditation. Heck while typing this since mornings are my worst time I have been up to the bathroom 3 times and back like nothing ever happened because if I let that truly bother me I would be a wreck in a few days.

    Scratch that - that would make 4 times. :)

    Mood is a major factor in IBS and gut issues in general - Like when teeth issues happen you just feel terrible, gut issues are no different. Trying to stand in front of a client or friend or social event and never feel ok or decent or you feel if you let your guard down then the walls will tumble down also is normal and I feel that daily. I know I have turned down some very inviting invitations with very beautiful people due to my medical issues, for fear of failure or any number of things that could go wrong.

    Several years ago I tried to shove aside everything and just do the things I wanted to do - it worked for a bit but in the end I was beaten back down to just hoping to make it past a day because the symptoms can be so relentless. I then try to crawl back out and try again.

    I equate IBS issues to a major issue we run into on ambulances that run medical calls. At a busy fire station an ambulance will leave the station several times a day or an hour. Each time they come back they plug into power to recharge the batteries on the ambulance, but they only charge up a bit before the next call, if you continue to run like that eventually the batteries fail without being fully charged at some point. When we get run down over time our symptoms much like the equipment on an ambulance works less well. At a point you need to recharge or take a totally different direction.

    I am not sure what your total list of items you have tried is, but there is always something more. I have been listening and seeing a new Dr here that is more up my alley on how he goes about the "functional medicine" way of solving issues. Mainly because he is based in reality and not based on trends and selling products. drruscio.com might be a podcast to listen to at some point seeing you were a nurse that might interest you as he is based in the studies and well real world info. That said he has not fixed me yet but I will be the first to say that I am sometimes my own enemy when it comes to following plans as some days I just run out of steam and cheat or give up to give myself back some little thing I am willing to pay for that day.

  • Hi Kiw1 12,

    Having suffered IBS for 50 years , since 20yrs old, I understand your issue. My suffering probably not as severe as yours and somehow , with help of anti-diarrhea meds, I got by till age 50. I then took early retirement as my work, as an accountant, was beginning to involve a lot of travel and meetings -this was causing extreme anxiety and I got badly stressed out.

    I was thinking about what you could do , as you are young to stop working.. As you are well educated and with wide medical experience, I would think your skills must be useful. What about trying some pharmaceutical companies. The kind of thing where people considering trying a product can email and get advice about the product etc. This might be possible from home.

    Not entirely sure of details of this type of job but I have seen this type of thing on line. For example , I use some high dose probiotics and various strains are available. The company selling are listed as The Gut Doctor, and they do other products. Anyway I was able to email them or Telephone and discuss my requirements and get advice about which product was likely to work best etc.

    Not sure if this , helpful but it would be a shame not to be able to use your skills and knowledge ,especially when it could help others.

    Best regards

    Will1234

  • I know how you feel, brother. It is a very difficult way to have to live, but live we must.

    Like you, I have suffered for a very long time with IBS, and six years ago this diagnosis was complicated by a second diagnosis of gastroparesis as well.

    Regarding the low fodmap diet, yes, you may be one who can only eat a handful of low fodmap foods, but if you can survive on those food few foods, then you may simply have to accept that eating is not a pleasure in your life but simply a necessity. I have had to do this myself. I can tolerate between three and five foods, depending on the day, (usually an egg, a baked white potato and kefir). I do not live to eat, but instead eat to live. I eat to survive. It is not a pleasure for me. I do not enjoy restaurants or social events around food. That is just my life. I have accepted it and moved on.

    Regarding work, I understand completely where you're coming from. I am a very well educated person and lost my ability to work in the outside world after 30 years. However, financially I still must work. I am also raising a young child, and this demands that I bring in consistent income. I live in the United States, so I cannot comment on work from home opportunities in your area, but I know that with a lot of hard work and persistence you can find a work from home occupation, and contribute your skills, your abilities, your talents, and your gifts to the world henceforth. I truly believe that working from home is your very best that, and I respectfully suggest that you begin focusing hard on finding work from home opportunities. Be careful. There are many scams online, so don't can't get caught up in those. But you can do this. I finally was successful in locating a job which allows me to MOSTLY work from home, after years of searching. I believe you can find an opportunity, too. Stay focused on that goal, don't get discouraged, and keep working until you find a job that allows you to work in the comfort of your home despite your physical condition.

    I wish you the very best, and I send you my compassion, knowing first-hand what a difficult journey this is.

  • I too suffer like you can't hold a desent job except my husband an I are self employed so my work is fairly easy. I have to cut so many foods out of my diet as well. I have been sick all my life first with a nervous stomach they say stay away from these foods then those foods now the IBS which all started with the nervous stomach. I cope too because I have to I have a husband 2 grown daughters and 4 grand kids who all need me. I am now 61 always had stomach and intestinal problems my whole life. By the grace of God is the only reason I am here today. Some days I am in the bathroom a 5-6 times before I can say I am done going. Wish I had a miracle I could share but I don't if any one finds one let's us all know. I'll keep you in my prayers!

  • He there, I really do feel for you and feel that the best way to deal with this is, I'm afraid, eat the very limited diet if it works. I had a Colonoscopy last year, in August, to double check that everything was okay as my IBS C had changed significantly (I've had it for 20 years now), the test came back clear. What I did notice though that with following the restricted diet 3 days before the procedure I felt incredibly well, I had not IBS symptoms whatsoever.

    I am cutting out lactose now out of my diet as I think this is a trigger but I will cut out whatever it takes go be rid of this awful disease.

    Best of luck with you and so pleased that New Zealand is a place that isn't stressful - sounds a wonderful place to live.

  • Sorry to hear of your struggle. It sounds like working from home would suit you best the online world is big now so I'm sure there is something you can do. Set up a business of some sort? Could you do online/distance learning tutoring? Maybe contact a careers advice service who may have some ideas? I am lucky to manage my IBS most of the time and work part time. I have found my IBS to be stress and anxiety related. I am guessing you have been tested for everything over the years? X

  • Have you tried the Fodmap diet? It works best for me!

  • Kia Ora, mates,

    Yes, I tried it FODMAP. It doesn't work. I've eliminated so many items from my diet that my dietitian told me that if I were to continue I may be in danger to my body.

    I also need to refrain from eating many types of food due to a severe reaction to my blood. I am a G6PD deficient, too. For those who are not familiar with the term, G6PD deficiency means, by and large, that if I consume or get by any other way (other than eating) a chemical material called Glucose-6-Phosphate-Dehydrogenase then I'm risking my red blood cells to explode. Red blood cells are the way of the body to move oxygen to the organs and taking CO2 out of the organs. In the medical phrasing world this whole thing is called Hemolysis, or Severe Hemolytic Anemia. It happened to me once in my life. I almost died as it happened very fast right after eating beans (that I was not aware of being in that soup). I had needed to be hospitalised and had an immediate blood transfusion in order to keep my hemoglobin level normal. The irony is that it all happened to me while eating at the hospital's staff dining room haha. 😉

    So in G6PD, I basically refrain from eating many things that "regular" patients suffering from IBS can allow themselves. I, for instance, cannot eat most types of beans, peas, and lentils. G6PD is very common actually, as 10% of the whole world's population has it, although they might not even know it. Usually, you can find it in the Mediterranean area, North Africa, USA in some populations, east Asia. Some places on earth people call G6PD as "Favism", to symbolise that it comes from Fava beans. Well... it's not precisely only Fava beans...

    Mates, I've been managing my G6PD diet since being aged 0 (when I was born). Managing the G6PD deficiency was never a problem. My both parent have it, too, so we always knew what we scould eat and what we should not. However, now that I have my IBS very severe, you may understand that the FODMAP could not be so helpful. In addition, I'm refraining from eating dairy products as I'm lactose intolerant, and gluten intolerant.

    One of you my friends wrote to me above that he/she has the food as necessity rather than a pleasure in his/her life. I know exactly how it is. But I wish I could say that those 5 or 7 items I can eat are actually calming my IBS. 🙁

    I am doing sport to destress my subconscious stress factor (I'm even a blue belt in taekwondo). But eliminating stress and all other apparent factors that cause IBS to flare doesn't work for me. It's very unfortunate.

    I have been going to many professionals here to treat my IBS (in New Zealand, we have a government subsidised health system, so I don't pay for the referrals). Gastroenterology specialists, dietitians, hypnotherapy, physiotherapist to name a few. None helped.

    Mates, I am so overwhelmed by your great and warm responses to my post. Heartwarming!!!

    If anyone of you get any idea or opportunity of working through the Internet (even if the work is not in New Zealand), please give me a shout. I will do anything in order to look at the eyes f my kids and tell them that I earned this money. I'm not working for 8 years now and it breaks my heart to be non productive to my beloved society.

    Thank you so, so, so much. You are wonderful!!

  • I have had IBS for 6 years now, and I don't have much to add to the others that have posted, except to say that you are not alone.

    I am lucky in that I run a business where I can work from home quite a bit (I work in software development and consulting). One thing you might want to consider is book-keeping. I know a number of people that use online software (Saasu, Xero, MYOB) to do the accounts for various small businesses. Not sure if that is something that interests you, but you don't need an accounting degree, and apart from tax time it is generally not something that has massive time pressure on you.

    I hope you find something that works for you whilst we all wait for a proper cure to our problems. Best of luck!

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