IBS Affects Our Quality of Life

By Amy Dodd Pilkington

3 min read

We have all heard the old adage "quality over quantity." I am a strong believer that quality of life is extremely important, and IBS greatly impacts our quality of life. Unfortunately, there seems to be little some of us can do to improve it.

Our daily struggles tend to be dismissed. Doctors ignore us. Friends and family do not understand. It seems the entire world feels like it is no big deal. Why do people ignore or minimize our suffering?

IBS-D is more than just diarrhea

I cannot tell you how many times I have had someone describe my IBS-D woes as "just diarrhea." They treat it like it is an occasional issue and I should be able to carry on with daily life. People think it is as simple as just finding a bathroom while I am out for the day. That is not how it works.

Urgency is a big issue, and this can result in accidents. It happens so fast that accidents can occur. There is not always enough time to find a bathroom. Locating a bathroom is the first thought when you visit a new place. There is a constant fear of being unable to get to a bathroom in time. It is enough to keep someone from leaving home unless necessary.

Dealing with IBS-D woes

Aside from worrying over getting to a bathroom in time, I often have to severely limit my diet. I often have to fast in order to leave the house. While we are sitting at a restaurant or I am at your home for a gathering where food is being served, I will often pass on eating. Do not push.

In order to leave home, I had to starve and will continue to starve until I can return home. While I am starving, I am forced to watch you eat. This is torture to someone who is dealing with serious hunger pangs. This all impacts my quality of life. In order to have a normal day away from home, I must starve and watch others eat while I starve.

IBS-C is more than just constipation

I have IBS-M, so I have bouts of IBS-D and IBS-C. Constipation is not the only issue with IBS-C. It is more than enough to deal with on its own, but it is so much more. This is not an occasional bout of constipation.

This is relentless, repetitive bouts that are far worse than just not being able to go. It is the type of constipation that can land you in the hospital. It is severe enough to cause physical injuries. This is constipation you have nightmares about. Aside from constipation, we also have great things like severe cramps, extreme bloating, severe nausea, and more.

The impact on quality of life

Any form of IBS is more than "just diarrhea" or "just constipation." We often must restrict our diet to be able to leave home. We starve or pay the consequences. Some of us suffer from malnutrition and vitamin deficiencies due to uncontrollable IBS. Most of us deal with chronic pain.

Every trip must be planned out. We need to know where the bathrooms are. We need to know how quickly we can get there, or we may not be able to leave home at all. Sometimes our pain is so great that we cannot drag ourselves out of the house. Just wearing clothes hurts.

IBS makes the days very long

Every meal and every outing of every day require some thought. Ignoring it all and going out on a whim can lead to embarrassing accidents, crippling pain, or torturous meals. It is not fun to constantly worry about making a path to the bathroom while watching others eat and feeling like a monster is clawing its way out of my innards. It is not fun having to plan days in advance in order to leave the house. I need to fast for 24 hours beforehand and can only eat once I return home. Can you imagine how hard that is while I watch you eat?

Our quality of life is greatly impacted, and the world seems to minimize our plight. Please be considerate of our suffering. How does IBS affect your quality of life? I would love to hear about your experience.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The IrritableBowelSyndrome.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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dklocey Member
 This is a great read & exactly how we live! 
1. Kelly Dabel, RD Community Admin
 <inline-mention username="dklocey" user-id="2292873"/> Thanks for commenting! I hope this was helpful to you and reminded you that you are not alone here. Wishing you the best, Kelly, <a href='http://Irritablebowelsyndrome.net' target='_blank'>Irritablebowelsyndrome.net</a> Team member
CPap Member
What you said is perfect and to the point exactly. I honestly couldn’t have said it better myself. I try to schedule my doctors appointments as early as possible because I know I do better if I don’t eat first. Well normally but there are times it sneaks up on you. I have to ALWAYS know where the closest bathroom is right away. I just drink water to stay hydrated but I refused to eat anything until I get back home. Home is your safe place sadly. I don’t go out of the house unless I have too. Then it’s always a process like you said to prepare yourself. Then with my anxiety and depression it makes matters worse on me so I really have to talk myself through the whole process just to go or leave my house. If I am having a very bad day like a flare up day and I have to go somewhere I will wait for my other half to get home to take me. But even then it’s a process. I can’t just leave the house. No I have to be sure I use the restroom first. That normally gives me a couple hours if I’m lucky sometimes only an hour. So yes everything has to be planned out ahead of time. But then if you get woken up from your lovely stomach then you have to rethink the whole thing and start planning all over. That’s why I rarely leave my house. I stay in my safe spot because I have everything I need right here. So yes it has dramatically cut my quality of life down. I try to look on the bright side that at least it’s not something that can cause cancer or worse but it’s still a battle we must struggle with every single day. Whether it be IBS-C, IBS-D or just IBS in general it’s always a struggle. I tell people to be grateful if your healthy and don’t take it for granted. I don’t tell others my problems or issues. I leave it to myself because I am not looking for sympathy or pitty from anyone. So I stay in my bubble. So yes I do exactly what you do! Plus I have GERD and SIBO to add to my mix. So it’s just another obstacle. 
1. Karina Moderator & Contributor
 <inline-mention username="CPap" user-id="4565242"/> I'm so sorry that you're struggling so much. I think we all have trouble leaving our house and are constantly looking for the closest bathroom, just in case. That just comes with having IBS I think... It must be so hard to have other illnesses added to that. Have you found that any remedies or diet changes help at all? Sending hugs, Karina (team member)
Msgerry Member
I literally just had an episode of IBS-D just trying to get gas. There's the worry about getting a ticket trying to get home in time as well. Which, of course, I didn't. And working 10-hour days at work at 63 doesn't help. The stress makes everything worse. 😪
1. Karina Moderator & Contributor
 <inline-mention username="Msgerry" user-id="4170851"/> I'm so sorry that this happened to you! I feel you, I had to quit my corporate job because the daily stress was just making me miserable. Working 10-hour days sounds very hard. 🙁 Will you be able to retire soon? Sending positive thoughts, Karina (team member)
2. Blueguy222 Member
 <inline-mention username="Msgerry" user-id="4170851"/> I hope my experience with Loperamide will help you so much. You can read it here....Hello, dears. I am living with IBS D and the pain is the same. In addition I had rectal prolapse problem until it was corrected by surgery (Rectopexy). After the surgery I still suffer and feel difficulty to control gas when am in IBs flare up. When I see a doctor they said that I may develop incontinence ,and if no progress I am told to do surgery again for the weak anal sphincter muscle, though it is not reliable. ( I didn't tell you about mental trauma because of IBS D + weak anal sphincter ). However before the surgery they told me to take Loperamide 2mg regularly for sometimes. When I read more about this tablet/capsule it stops not only diarrhea , but it decreases the urgency in a considerable extent . Based on this, I stared to take Loperamide 2 capsules every morning and 2 capsules before bed. In these times there were days I didn't go to bathroom at all. Then I decreased the dose and started to take only two capsules ( 4mg) in the morning. By now , I have no urgency problem and am no more 'stay at home' . I go to the bathroom only once a day. I can go out and do my work with out any stress. if not the case of the incontinence and the anorectal surgeon I wouldn't have this relief. The Gastroenterologists didn't tell me this - the only thing they told me about Loperamide is to take 4mg when there is diarrhea. May be they don't have the experience like the anorectal surgeons. Therefore my advise is that you can try Loperamide to avoid not only diarrhea, but also the urgency . Then you can go out by avoiding trigger foods. As long as I read on internet Loperamide is safe and it didn't interact with other medicines. But you may avoid alcohol. You can even discuss the issue with your doctor and start the medicine 4 mg ( 2 capsules in the morning ) . You may also repeat the same dose before bed if you think it is necessary. I would have say a lot of my experiences after I started to take this medicine- but I am an Ethiopian and English is my second language.
hateibs Member
 I agree, it is a really awful situation, that most normal people can't understand. They don't know how lucky they are to be able to eat properly and go to the bathroom normally every morning. I am very fortunate to have a good friend who suffered with IBS -D herself for many many years. She is okay now minus occasional flare ups when stress gets the upper hand. At least she understands the Fodmap diet like no one else. 
1. Karina Moderator & Contributor
 <inline-mention username="hateibs" user-id="4146293"/> I'm glad that you have a friend who understands what you're going through. Having this kind of support is so helpful! Thank you so much for sharing. Hugs, Karina (team member)
GardenGoddess Member
You so describe my life. For years I struggled with constipation, alternating with diahrea. Because of the constipation, I have diverticulosis all through my colon, and have had part removed. When i have to leave the house , I go in the afternoon, and do not eat hours before I leave or until I get home. ALWAYS look for the restroom. ANd take a change of clothes and wipes with me. Also have celiac so my diet is really restricted. Which means eating out or with friends is <a href='http://difficult.The' target='_blank' rel='noopener noreferrer ugc'>difficult.The</a> isolation can get depressing. 
1. Karina Moderator & Contributor
 <inline-mention username="GardenGoddess" user-id="4243467"/> I'm sorry that you've been through all that and are still struggling so much. I feel you about the restricted diet. I can't have gluten either and it makes eating such a challenge, even at home because my family doesn't like my gluten-free versions and we always have to make two different meals. Have you found anything that brings you relief? Sending hugs, Karina (team member)
lisaw Member
This article is accurate. But it’s Not just finding and using the bathroom. For me it’s being in the bathroom for awhile and going back 4,5,6 or more. 
1. Karina Moderator & Contributor
 <inline-mention username="lisaw" user-id="2312744"/> I feel you, I also have to use the bathroom multiple in a row, even if my flare is very mild. This makes it even harder to be outside of the house when it happens. 🙁 How have you been feeling lately? Karina (team member)
mktggirl Member
I once had a nurse at my obstetrician's office tell me she'd much rather have chronic diarrhea instead of chronic constipation because "then at least everything keeps moving through". What a trivialization of IBS-D. People that don't know, very much write off our symptoms and act like this should be easy to deal with. It's not. Thanks for commiserating that no matter how our symptoms manifest we all need to do what we can to make our own quality of life the best we can. 
1. Karina Moderator & Contributor
 <inline-mention username="mktggirl" user-id="2314123"/> I hear you, chronic diarrhea is so much more of a problem than simply having to use the bathroom multiple times. People who don't suffer from IBS often can't understand the impact it has on our lives... I always try to remind myself that I'm happy for them since I wouldn't wish this illness on anyone. Hugs, Karina (team member)
Serenityjunkie Member
This is the problem with having a fairly invisible condition. I also have OCD along which is fairly well controlled, enough to lead a very basic life. It would be great if others understood, IBS and OCD but people dont seem to really understand something unless they go through it themselves. In truth they dont have to understand and we can save ourselves a lot of head trouble by doing our best to not let this upset us- as best we can.
1. Serenityjunkie Member
 <inline-mention username="Karina" user-id="2303467"/> Its not easy when one of the main facets of OCD has finally come true. I dont travel too far, but take sensible precautions including a radar key. WE humans do have a certain animal nature which I think for years I had been trying to hide, now unfortunately some of my fears have come to be true.. It is handleable with taking precautions, and thankfully that aspect of OCD is reasonably well controlled,probably better than your average punter who would have a nasty accident. I feel that with both OCD and IBS the removal of shame is vital bu it takes time. 
2. Karina Moderator & Contributor
 <inline-mention username="Serenityjunkie" user-id="4207370"/> I can only imagine how hard that must be for you. I'm glad that you have some control over your OCD - living with mental illnesses on top of IBS is such a challenge. Thank you so much for sharing. Sending hugs, Karina (team member)
Blueguy222 Member
Hello, dears. I am living with IBS D and the pain is the same. In addition I had rectal prolapse problem until it was corrected by surgery (Rectopexy). After the surgery I still suffer and feel difficulty to control gas when am in IBs flare up. When I see a doctor they said that I may develop incontinence ,and if no progress I am told to do surgery again for the weak anal sphincter muscle, though it is not reliable. ( I didn't tell you about mental trauma because of IBS D + weak anal sphincter ). However before the surgery they told me to take Loperamide 2mg regularly for sometimes. When I read more about this tablet/capsule it stops not only diarrhea , but it decreases the urgency in a considerable extent . Based on this, I stared to take Loperamide 2 capsules every morning and 2 capsules before bed. In these times there were days I didn't go to bathroom at all. Then I decreased the dose and started to take only two capsules ( 4mg) in the morning. By now , I have no urgency problem and am no more 'stay at home' . I go to the bathroom only once a day. I can go out and do my work with out any stress. if not the case of the incontinence and the anorectal surgeon I wouldn't have this relief. The Gastroenterologists didn't tell me this - the only thing they told me about Loperamide is to take 4mg when there is diarrhea. May be they don't have the experience like the anorectal surgeons. Therefore my advise is that you can try Loperamide to avoid not only diarrhea, but also the urgency . Then you can go out by avoiding trigger foods. As long as I read on internet Loperamide is safe and it didn't interact with other medicines. But you may avoid alcohol. You can even discuss the issue with your doctor and start the medicine 4 mg ( 2 capsules in the morning ) . I would have say a lot of my experiences after I started to take this medicine- but I am an Ethiopian and English is my second language. Best wishes. 
1. Karina Moderator & Contributor
 <inline-mention username="Blueguy222" user-id="4131141"/> Thank you so much for sharing your story! I went through a couple of weeks of severe IBS-D flares along with a week pelvic floor after giving birth and it was horrible, so I feel your pain! I'm so glad that you finally found a way to get relief from the flares and urgency. Wishing you all the best, Karina (team member)
2. Blueguy222 Member
 <inline-mention username="Blueguy222" user-id="4131141"/> Thank you.
Essie1252 Member
I agree completely. I could not have said it better myself. For me it’s a new diagnosis, ibs-m. You hit it right on.

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