What can I do if I can’t work because of my IBS - IBS Network

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What can I do if I can’t work because of my IBS

Hunter1106 profile image
Hunter1106

Hi I’m 19 and recently been diagnosed with bad IBS .. I’ve been dealing with server constant stomach pain since June last year and have been unable to work because of this. The doctor has told me the pain may not get better, I am after some advice on what I can do if I can no longer work . Thank you in advance

14 Replies

Hi Hunter I was diagnosed ibs an crohns over 20 years ago. I would be here all night if I shared my journey but if I can share 1 thing don't let this illness Rob you of your life. You are so young to think you will never have a career. I really understand how hard it is to function when you feel so poorly but please don't give up hope. You will read lots of people's stories on here how sometimes work can be a distraction especially if you find a career that you love. Have a good think about what you are good at you might be able to do a job that is very non physical like counselling or something.Even if it's just a couple of days a week. You might be entitled to top up benefits if you can't work full-time .

All the best hope this difficult time will pass for you so that you can focus on something positive

Good luck stay strong 💪

rosco1 profile image
rosco1 in reply to Beechview

Hi Beechview, I just had to comment on your reply to Hunter1106. Yes their young but it's not as easy to have a career when you suffer from Severe Chronic Pain. I to was in the same situation, having to be off work a lot due to my IBS, noting takes your mind off the pain

Hi Hunter1106, normally your age would be a advantage with you being so young. Maybe you could do as Beechview suggested work a couple of days. I can understand your concern about not being able to work, I was a little lucky in a way as I'm in my late 50s but I had to ask my employer to pay me off due to I'll health so I could try and claim benefits as I had a mortgage to pay. I hope your IBS gets better.

Do you know what brought it on last June ? Was it stress ? You might want to think of it as time to deal with clearing it getting it under control the tummy as a temporary change for now. And your diet I have it as well mines from meds and stress and pain surgeries . . Have you done a total diet change ? It takes ages once it’s bad so long and it’s so hard on the brain. You feel lost and sad. Think of it as your job. Do your guided meditations your walks your hobbies helping others take a class or two if you can work part time do so. I find idle person busy mind. So it’s important to have purpose if that purpose is for awhile meditation food research exercise kindness to others self do so.it happens to some people. And I don’t know what your men steal cycle is like but eat well and see if it’s related.

Hi Hunter, I was diagnised aged 14 and I've not worked for 10 years due to my ibs and diverticular disease. I'm practically a prisoner in my own home. I go shopping once a week and thats all. My son has asd so I have been caring for him but has he's getting older he needs me less and less and its difficult trying to find a purpose. My husband is the breadwinner and I'm not entitled to my own benefits and it is a struggle everyday but we manage with one wage, child benefit and child tax credits. My sons disability has been stopped as he's now 16 and not entitled to anything and in a couple of years I will have to return to work to keep a roof over our heads, but like you I'm in pain everyday and make more trips to the loo than I ever thought was possible. I have worked in catering and hospitality all my life and there's no chance of returning to it due to my ibs and covid-19. I started doing a degree in business management accounting with the OU in October and although I'm alot older than you (42) I've found a purpose and know that the future holds better things. Studying is difficult as my education was poor but its helped me with routine and it helps to take my mind off how I feel, especially if I know its going to be 'one of those days'. Do something you enjoy, start off slowly and don't let it take over your life like I have. I will always regret not trying to make a better future for my son once I'm gone but it's never too late to try.

Sorry to hear what you are going through. If you are in the UK you can talk to Citizens Advice so they can go through your options with you.

I am a bit perturbed by the doctor saying the pain won't get better. What have they tried?

Here is some information about IBS that I have shared with others in this group in case any of these tips are of interest to you:

IBS can be due to a number or combination of factors - these can be stress (including stress from early life experiences) which impacts the communication between the brain and the digestive system. There are lots of free webinars online at the moment regarding mindfulness meditation which might help. Plus you can ask to be referred for CBT or something similar to reduce anxiety - I would have thought online appointments are available. Exercise can play a major role in IBS in terms of reducing stress, helping your gut microbiome and regulating bowel movements.

There is also not absorbing certain types of carbohydrates called FODMAPs very well, the residue ending up in the colon and bacteria feeding off them causing symptoms. Ordinarily feeding gut bacteria is a really good thing - when you feed good gut bacteria these produce by-products that have great health effects in the gut and throughout the body. However, in some people with IBS bad bugs might have the upper hand over good - these bad bugs may cause symptoms such as excess gas, pain or disordered bowel movements. There is an interesting infographic on this here:

gutmicrobiotaforhealth.com/....

This is why it’s worth trying probiotics such as Alflorex (which has been scientifically studied for IBS) to crowd out the bad bugs and make their numbers die down. If that doesn't work you can try the FODMAP elimination and reintroduction diet. This is normally under the guidance of a nutritionist via GP referral - this may not be possible at the moment so you can read about it online. If you download the Monash University FODMAP app and Kings College fodmap apps, they will tell you which foods contain FODMAPs and in what quantities. You can eliminate all FODMAPs for 2 weeks and then introduce each type of FODMAP one at a time starting in small quantities, increasing over a 3 day period and wait up to 4 days for symptoms. I go much slower than this - only introducing a small amount (1/4 to 1/3 of a normal portion size) of the same food for 3 days and then increase if tolerable or no symptoms and cut back to the previous amount if symptoms for longer and then try to increment again . I've read your microbiome can adapt to handling a new food if introduced very slowly and your bad bugs are under control with a good probiotic. Ideally you want to eat as many FODMAPs as you can since they are good for your health. Many people with IBS don't have diverse gut bacteria - it has been found that people who lack a diverse microbiome are more prone to diseases in general. In the long run, if you can get your symptoms under control, the ideal situation is to have a very varied diet - lots of different coloured fruits and vegetables, a variety of protein and carbohydrate sources including cereal fibres. This may seem a long way off, but with the right treatment all of this is possible. The year before last all I could consume to control my IBS was white rice, protein and limited low fodmap veg. Using the approach above (particularly introducing Alflorex) I am now able to consume far more foods - more than I've ever dreamed of including wholewheat bread which is unheard of for me.

If you are also suffering from pain, you may be suffering from visceral hypersensitivity (functional abdominal pain) - there is info about it here:

iffgd.org/lower-gi-disorder...

It is where the brain interprets the normal activity of the bowel as pain - this is due to a wearing down of neurons in pain control centres of the brain which can be caused by PTSD, neglect or abuse in childhood, extreme stressful events etc. The first line treatment is nerve pain agents such as low dose amitriptyline. There is a theory that being on something like amitriptyline for 6-12 months can help the pain control centre neurons to regenerate. Note that amitriptyline can cause constipation, but this can be helpful in people who are diarrhea dominant. Unfortunately I couldn't tolerate these. Linaclotide (for IBS-C only) & Alflorex have helped me with this intestinal pain.

You may also find assistance with anti-spasmodic medication such as mebeverine (Colofac) or enteric coated peppermint.

You can find some info on self management here:

theibsnetwork.org/the-self-...

If all of the usual IBS remedies fail and you are experiencing diarrhea, it is worth getting tested for BAM (Bile Acid Malabsorption), which can cause constant diarrhea - there is a separate test and treatment for that. Good luck.

Child2020 profile image
Child2020 in reply to xjrs

Thank you for sharing all of this. I have had IBS for years and even I can take something from you reply. I've tried FODMAP before but while mine is mostly emotional stress and anxiety related it can not hurt to try this diet shift again.

xjrs profile image
xjrs in reply to Child2020

I would try Alflorex probiotic first if you are able. I know it is expensive, but it has changed my life. It may make you more tolerant to foods which means that you can either tolerate FODMAPs or if you try the FODMAP elimination and reintroduction diet there will be more FODMAPs that you can eat, which will be better for your health.

Hello Hunter,Around 19 years ago I went through a massive shift in my digestion system and I had no idea what was happening. I got a leaflet through the door about bowl cancer which, as you can imagine, scared the living daylights out of me. I made an appointment at my surgery and the doctor I had to see examined me and made me feel terrible, telling me I was far to young for bowel cancer (I wasn't but it was not common in my age group at the time).

I took the medication I was prescribed and it made me feel worse so I stopped taking them and booked an appointment with my usual doctor. Once I had spoken to her I felt so much better. She sent me for all sorts of tests to rule out all the other things especially coeliac as this is in my family. It was left at IBS and she spoke to me about what my opinion were. I wanted to keep things as natural as possible although she did give me the names of products she recommends for control of symptoms.

I have days that are worse than others like everyone but the one thing I certainly no is worry is your worst enemy. My symptoms are worse when I worry and stress that I might have an attack. It takes time and practice to reach a level where it isn't a controlling factor every day but it is possible.

A food and symptom diary may help if it's diet related (mine isn't so much), meditation will not hurt, and if I need to take anything I use Imodium comfort as this version helps with the cramps (it's the best thing I've found).

In terms of work, is there a skill you have that you could utilize from home? Writing perhaps, like ghost writing? Call center staff but homebased (most are right now)?

I wish you all the luck in the world and I hope this is some help to you.

hi hunter i was diagnosed with ibs in 2007 it started to ruin my life to, then in 2014 i had my gall bladder removed and contracted bile salt malabsorbtion which ment everything i ate went through me with chronic diarreah like worse than my ibs.i was referred to the royal free london and saw a professor that gave me colesipol or colestid as commonly known. Take 1 sachet before meals up to 3 times a day, it changed my life for the better, i rarely get diarreah only occasionaly now and the same with the cramps very rarely.

see your gp and if he puts you on colestipol lets know how it helped you, good luck.

IBS can be difficult to manage, but usually does not cause that degree of debilitation. I would get a second opinion from a gastroenterologist. After that, ask the gastroenterologist what he thinks of the Fodmap diet. His job is to help you improve.

Hi so sorry your suffering ☹️ I’ve had IBS for 33 years since complicated gall bladder removal and the first 2/3 years it did stop me from living my life. It did settle but not back to ‘normal’ it took me many years to finally agree to small dose antidepressant. They are prescribed to help calm the gut! they changed my attitude and I had the ‘ so what if it kicks off ‘ I started to work nights for 15 years just so not many people around. Then 3 years ago I changed to day shift in a new job. Very scary but I did it. I’ve never looked back if my ibs kicks off my colleagues understand I go missing for a little bit. the antidepressants have helped me so much to deal with the pain and fear of going out. I know they are not for everyone and you are very young to try something like this. I was 30 when I first agreed to go on them as I associated them with depression. They are used for a number of conditions nowadays but when I was younger it was all new findings. Hope your symptoms improve and all the best wishes to you for the future 😊

Hi Hunter, 19 was about the same time I started have symptoms, but it wasn't called IBS back then. I found it very difficult to keep a job as I was constantly off on sick days because of flare up. Doctors and Therapists didn't really help either as it was back and forth as to the reasons, as I had a complicated life beforehand.

So my first part of my advice is to find a good doctor. One that listens, and if you do not feel as though a GP has, asked to see a different one. Keep doing this until you are happy that someone is actually listening to your symptoms and how they affect your everyday life.

Second, do not give up on work. Work is a good distraction to diverts attention to something other than pain. But I would say it's important to do work you like, and enjoy. Being so young gives you an advantage of being able to try different environments, and activities, without harming any potential career. But also do not be shy about explaining your situation to your employer. Most are understanding and will have you the space, which adds much confidence.

If all that fails, you could go on Employment & Support Allowance, but for IBS that is not an easy sell because IBS on its own and you need documentation to prove it.

Hope that helps a little, but I wish you luck and just know your not alone :)

Hi!I agree with xjrs do not understand your GPs comment the pain won't get any better. Why? Does he know what the cause is?

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