# IBS-D controls my life



## airmc (May 19, 2014)

I am a 19 year old female and have suffered with what doctors have labelled IBS-D since I was about 13. I feel like its progressively got worse but I think this is due to psychological reasons more than anything. To be honest I don't even know if I actually have IBS. The main thing that affects me is that I will occasionally experience an urgent need to go to the bathroom but the thing that gets me down is that I don't know what causes it. The types of food that make me feel like this are never the same which makes avoiding things really hard.

I have been to see a gastroenterologist and had blood tests etc but don't feel like I was ever taken that seriously. I was never formally diagnosed by the doctor himself about my IBS but was referred to a dietician which was a massive waste of my time as I just got given a booklet about IBS and was talked through how eating regular meals would help- which hasn't at all. I really wish I could just find out what foods I'm actually intolerant too and avoid them all together.

Its got to a point now where I just avoid eating out at all costs. I won't eat lunch at work and eat the bare minimum before I go. I get worried about going out, even for social reasons and will work myself up over staying at someone else's house. I try to avoid social occasions as much as possible and have lost friends because of this. The thought of being in a relationship is just not an option as I feel like this problem is just too embarrassing to ever share with someone else. I was at university for about six months and coped quite well but I'm going back in September and since coming home I feel like I have let things get a lot worse. I feel like I've let IBS or whatever this problem is take over my life and I don't know what to do. I'd also love to travel the world or work at a summer camp but feel like this would just be too much to handle what with having to watch what I eat and having no idea what to avoid.

This really gets me down and I feel like I have no-one to talk to about it as I am too embarrassed to tell any of my friends and talk to my family about it. Feel like I'll always be stuck with this life where I'm not really living due to stomach issues and I just don't know what to do about it.


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## Kathleen M. (Nov 16, 1999)

Sometimes it is more how you eat than what you eat. You skip enough meals then finally break down and eat you may get urgent diarrhea from even the safest of diets because your gut will over react to finally breaking the fast, especially since we tend to over-eat when we wait until we are so hungry we can't take not eating anymore.

you might try sticking to the low FODMAP diet as those foods are less fermentable so may cause less gas, although diarrhea right after a meal is usually more from the total fat in a meal (and restaurant food can be surprisingly fatty) or the meal being larger (and many restaurants serve huge portions so hard to eat a normal sized meal there).


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## BAH123 (May 21, 2014)

Hi, I have the same problem,..I have IBS-D and understand how easy it is to feel paranoid about being away from home or in social situations just incase your IBS starts playing up again. I'm also 19 and I understand how annoying It is for your life to feel like it revolves around this. Because I feel anxious about going out sometimes I've started carry imodiums round with me just incase and taking peppermint oil before meals really just eases digestion. It makes me feel less anxious that I have these with me and the peppermint oil calms you down. It's also helped me talking to friends and my boyfriend about it so that they understand how I feel and I feel less isolated


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## PajamaKitty (Jun 12, 2014)

I don't have so much advice but I hope I can provide some reassurance...

Don't lose hope. Suffering from chronic illness at a young age can be extra difficult. Angry that you ant do the same thing your peers do, depressed about how your illness will affect your future... It's extremely difficult psychologically. I'm not a doctor, so I can't fix your symptoms... but maybe I can help with the rest..

I am 24 going on 25. I have had IBS since I was 19. I was diagnosed at age 21. At the beginning, the first two years, my IBS took over my life and I was convinced it would never end. I figured I'd never get married or have kids or travel or even get my college degree! I had to drop out for a time because I was bedridden... I thought of the future and all I could think of was pain and suffering and my IBS ruining every good moment, experience, or memory. I really figured my life was over. I'd spend the rest of it sick and in pain.

It doesn't have to be that way! Finding the road to recovering when you have IBS is HARD! There is no one sure cure for everyone. This disease affects everyone so differently... its a process of trial and error... and that sucks! But find yourself a good doctor and never give up! That's the first part... find a doctor who cares! I went through 5 doctors before I found the right one. Don't give up! Be persistent! Make them listen. If they dont, then go find someone else. I know that sounds easier said then done, but its the first step to true recovery. You need a physician to guide you and to help you, so don't give up till you find one that listens.

Beyond that, prepare for the mental and emotional battle. You are going to ups and downs, it's going to be a rough ride, but you can do it. Let yourself mourn. It is okay to mourn for the life you thought you were going to live. You 19 for God's sake! No one grows up thinking "I wanna grow up to have a chronic illness that is debilitating and takes over my entire existence!" We all have plans... chronic illness throws a big fat wrench into those plans. So it is okay to be angry, sad, in denial... Grieve. You have to. Scream at the heavens how its unfair, look at your friends and feel jealous, cry into a loved ones shoulder... all of this is more than okay. These feels come with this sort of diagnosis/life.

After that, after you finish grieving, you move on. The second stage, really, of chronic illness is accepting it. You have to accept that this is your life now, that no matter how angry you are, it isnt going to change. So you find a way to make it work. YOU ARE NOT YOUR ILLNESS. Tell yourself this everyday. You are not defined by your illness. You are not "the sick girl" you are a girl who happens to be sick. You will find a way around it, You will still live a wonderful life and you can still have big wonderful dreams and goals to reach for. It gets easier... I know everyone says that but it does. Because you learn what works and what doesnt. Again, IBS is trial and error.. you will learn as you go. Its a long process, but it's worth it. You can still have just as amazing if not more amazing a life. You haven't lost your future, you just have to adjust the plans you had.

I hope some of this helps. When I was first sick, these are the things that people told me that helped the most, and these are the things I remind myself of on bad days. I'm sorry I don't have some big life changing advice to help your symptoms, but I hope my words eased your mind a bit. It's hard, but you can do it. You have come here to this forum and thats a big step  Finding support from people who understand is a huge comfort. I know I often feel really alone in my everyday life, and coming here helps to ease my mind.

Please don't hesitate to reach out. My inbox is always open if you just need to rant and need a listening ear, or advice <3


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## GrumbleGuts (May 3, 2014)

airmic,

I understand how you feel. I've had severe alternating IBS for about 14 years and it's definitely not easy. I find it helpful to keep a journal of when and what I eat. Also, sometimes it may be a good idea to seek a GI who may be willing to work with you more. The first 2 GIs I saw pretty much treated my IBS like it was no big deal. Eat right and exercise were my only apparent options and as an 8 year old kid at the time, how was I to know different? The frustrating part is that nothing is completely hammered in stone. Everyone is different and has to go about their IBS management process differently. A lot of it, unfortunately, seems to be a jump through hoops with testing, dietary changes, lifestyle changes, stress management, etc. but it's worth investing in if it means a healthier life. I'm only on the start of my healing journey with a new GI that has taken me seriously and has been very kind and helpful. It just takes the right doctor sometimes.

On another note, I did the wrong thing for most of my life and never told anyone I had this medical condition. I'm sure many of my old friends thought I was flaky when I always made excuses not to go out and at one point even my own family didn't know I still had it. I was just very ashamed and disgusted with myself and struggled because of it. When I decided to open up about it, I found people are much more understanding than some of us (like myself) who get so worked up and anxious about it tend to play it out to be. No, it isn't easy but it's much harder to go alone. You don't have to explain the gory details, but having people who care about you know the truth means they're able to be there for you and understand that yeah, you can't go out because you're having an attack, not because you're making excuses.


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## Acceptance (Jul 12, 2014)

I understand how you feel and I think everyone in this forum understands. IBS is just horrible, and knowing there is not a cure can leave you hopeless and depressed. I am 30 and have had IBS since I was 16. I recently started taking Lotronex, .5MG nightly and have seen a huge improvement in my mornings. For me, there are (2) parts to IBS-D. One is the mornings.... where you have to hang around the house before leaving, as I normally would always have an attack, and two... eating out. Though I have not conquered the 2nd issue.... my mornings are considerably better. I can actually eat breakfast and leave for work, which before I would never eat before I leave the house. I don't take a pill in the morning, because it makes my equilibrium a little off, and I don't enjoy feeling that way. But, taking it at night, then sleeping, I never notice it. I do need to up my intake and see if that makes a difference during the day.

I also saw a counselor for about 8 months, and used tappers. She treated me for PTSD.. which I understand is most commonly known for soldiers. But, I have had a few "accidents" in my life due to IBS and it made me so terrified of having any more.. that I panicked non-stop every time I went out.

The therapy really helped.. like the other member said, and my username.... the name of the game is acceptance. When you Accept the fact that this is what God gave you, and you need to change your lifestyle around it, you will almost free yourself from the misery. The other thing, like the other person said... is to tell your close friends, family and co-workers about the issue. This will also make you more comfortable and not so embarrassed when an attack happens. Though I am dealing with some ignorant co-workers, that no matter how many times I tell them I have a medical condition.. they tell me I eat so light all the time when we go out for lunch. It is so frustrating. But, again Acceptance and move on. My emotional state comes and goes with IBS... right now I am down about it again... because I am going on a 10 day New York vacation in October. IBS makes it so hard to travel, and eating out everyday.... but I have to focus and plan ahead and not let it get to me. Try to enjoy myself.

Sometimes I think how and I ever going to have kids and worry about my life.... but there I go again... worrying about things in my life that are out of my hands. That is what anxiety is. You have to accept you do not have control of every situation in life and let it go. Accept that whatever situation you will be in, will not last a lifetime. So, acceptance and lifestyle change.

I let my anxiety get to me more than I would like, but I have a mental toolbox that I try my hardest to reassure myself in any situation.

Anyone who needs to talk, please inbox me. IBS is a terrible disease that no one should ever had to go thru alone. Talking it out, and feeling like you are not alone can work wonders. May peace and love be with you.. you are not alone.


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