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IBS and social life

  • By lololop

    I’ve started suffering from IBS 5 years ago. My episode then went on for about 8 months or so . That means having diarrhea everyday, not being able to leave the house for about 3 or 4 hours after I’ve woken up, skipping school, feeling always tires.. I think you know what I am talking about. For the next 4 years things went smoothly, as in I would have diarrhea like one day out of five, but I could handle that with a bit of loperamide.

    But 4 months ago, I started to have diarrhea everyday again, and it’s totally ruined my social life. I have no idea how to explain it to people, and I just can’t. I always have to skip things, I try to wake up at 5 if I have to leave at 8 but sometimes I just snooze the alarm and I have to skip my education. It’s always the worst in the morning. Is it like that for you too?

    I find myself unable to make new friends because I am embarassed to explain it to them. People always seem to think that it’s your fault when you’re sick. I am starting to believe that it’s my fault too… I just feel like I can’t do social life anymore. I am afraid of travelling as it’s hard finding a toilet. I am so tired of living with IBS myself and I just can’t cope with seeing the people close to me getting tired of me living with it too.
    Also, I can’t stand being told to do things anymore. Stop eating meat! Start drinking more water! It’s your fault, you have to stop doing that! How can people who have 0 knowledge of IBS compared to the 1000 doctors I saw really believe that they know more about it?

    Has anyone experienced similar things?

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  • By Kelly Dabel Moderator

    Hi lololop, Thank you for sharing your story and reaching out. So sorry your symptoms have started up again and that you are dealing with this. Anytime you have any new, changing, worsening or concerning symptoms, speak with your doctor right away, if you haven’t already. I hope others in our community chime in as well with their personal experiences to share. You are not alone here. In addition to speaking with your doctor, this article may be helpful to you: https://irritablebowelsyndrome.net/living/social-life-vs-ibs-the-ongoing-battle/. Wishing you some relief soon and more manageable symptoms. Best, Kelly, Irritablebowelsyndrome.net Team Member

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  • By Fostext

    Hi lololop,
    Yes, I can relate to everything you are saying! Except I don’t have Diarrhea, I have constipation. Either way, the endless Doctors visits, the endless bad advice and the social isolation.

    Do you mind if I ask what you’ve tried thus far and what has helped and what hasn’t? That’s the really interesting and frustrating part of IBS, it’s so individualized.

    And I agree that sometimes I tell myself that my symptoms are my fault. But I have to reinforce that they are not, as no one wishes IBS upon themselves. Figuring out the” triggers” is the tricky part. Especially when some can mask each other and there can be so many that it can get easy to forget about 1 trigger because you’ve just narrowly avoided a handful of others.

    I’ve have not had a good day for BM’s in months. I’ve honestly lost track. But I’m trying to hold out hope that if I try to make all of the big changes I’m aiming for, I’ll wake up some Morning and feel great. And speaking of mornings, yes, mornings are rough. I’m really lucky to have a supportive team at work who understand bowel issues and also have their own.

    The social isolation part is not fun. I’ve told myself I wanted to be more social lately, then my bowel issues make me hide. The tricky part about this is the fact that social interactions can make us all feel more connected and happier overall. But this can be a catch 22 when it comes to IBS sufferers.

    Keep trying new things, as I believe that getting relief from IBS is a combination of fighting symptoms, with Diet and Mental health being the two categories.

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  • By lololop

    Hello! Thank you both so much for your replies and support!

    Yes, I’ve already seen a handful of doctors and I’m still working with them to see if there is anything left to discover or to try..

    As for what has worked and what has not. I’ve been told to follow the classical “rice, chicken meat, bananas,soup” diet, and I did for one month and I’ve also taking meds that were supposed to help, but that didn’t work. When I got better 5 years ago, it was when I followed a diet my doctor told me to follow, and I was not allowed to eat sugar, potatoes, oranges, coffee of course, no juice of any kind, avoid peas and corn, avoid anything fried and something like that. Well that one worked, but my doctor told me to follow it after he gave me antibiotics, because he thought that my symptoms might have been there because of a mild infection. This is why now I am testing myself for different infections, as well as for other illnesses, even though as far nothing has come up.

    Anyway, I advise you to continue to work with your doctors! Sometimes it feels like it is a journey that is going nowhere, but you may discover the magic solution in the process, just like I did 5 years ago, after almost giving up!

    Also, what is working for me is sleeping a lot. It makes the pain easier in the morning, sometimes it is even not there. And avoiding coffee, juice and tea. I love them, but anything other than water triggeres me. Avoiding taking meds that are not for IBS, such as aspirin, if it not absolutely necessary. Even though I find that when you have IBS, everything about your health seems to be more fragile. I get what you were saying about the triggers and yes, it is a very hard journey. But as I said, I got better one time before, I can tell you that it is worth trying and trying! Of course, as I said, the symptoms didn’t all go away, as in I would have diarrhea a day out of five and my abdomen would hurt in the morning, but it has always been like that and I was able, for 4 years, to live my life without thinking about it or worrying about it.

    You mentioned mental health and yes, that is also an issue! As in Ibs usually makes your more stresses, and stress makes your health worse!

    Maybe you can tell me what works for you, too? I know that ibs-d and ibs-c are kind of different, but for sure there are things that work for both.
    Thank you for sharing part of your story with me!

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  • By GinaH

    It is definitely life changing…aggravating and can be humiliating. It robs us from living life at times.
    I pretty much have isolated myself from life aside from daily stuff I.e. work..grocery shopping etc.
    I no longer go out with friends….my children/grandchildren live 3 hours away which puts a damper on my visits.
    It really is awful.
    I am glad to have found this site because it is hard for anyone to understand unless they are going through this issue.
    Some people see it as an excuse for me to not go somewhere etc….but, it really is not. I feel like a hostage ….ugh

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    • By Kelly Dabel Moderator

      Hello butterdog8, thank you for sharing! So glad that you have found something that is helping you feel better. Wishing you continued relief. It’s a good idea for anyone here who may be interested to first check with their doctor and pharmacist before starting any new regime, including over the counter. Thank you for commenting and being part of our community. Best, Kelly, IrritableBowelSyndrome.net Team Member

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    • By Sha1956

      I know how you feel. I am 62 and have had IBS for 35 years (diagnosed ) I’ve had it most of my life. It’s a visous cycle. I saw a psychologist for many years who did hypnosis with me. I still listen to them. When I lived on Long Island NY I knew every bathroom. The worst was leaving the Island and getting stuck in traffic going over bridges in Brooklyn, the Bronx and other places that were hard to get to a bathroom. I hated it. I take meds and we moved to Florida 2 years ago. I still worry about needing a bathroom when traveling but it’s gotten better. Once I get where we are going I’m usually fine. I am now starting to eat before traveling home. I used to starve myself. There are times I feel bad if I get an attack. I will be a first time grandma in September. That will be a 2 hour drive. Don’t let anyone tell you that you are using it as an excuse. Those who never had IBS have NO IDEA what it’s like. Check and see if you can find a psychologist who works with IBS patients. It is also triggered by anticipatory anxiety for me so I work on that and take Effexor XR. Good luck and feel better!

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  • By emmszen

    For what it’s worth, here is a 78 year old female with IBS (whose 98 year old Mom suffered as well) telling my story. Mostly, to encourage y’all. IBS stinks,literally, and is a debilitating problem as well as a social handicap. However, take it from an old lady, it’s not the end of the world. I’ve had many of the same issues I’ve seen mentioned here, however, no nausea. Two things exacerbated my problem — having had my colon removed due to diverticulitis and a hemmoridectomy (sp?) after the birth of my twins. Oh, and I had a rectal prolapse! Years of doing the bowel roller coaster, I think I’m finally on a regiment that works. Working with my GI doc, we’ve discovered that my problem is bacterial. This was discovered when I took an antibiotic (Xifaxen) which worked on the gut and had immediate relief, which lasted about five weeks. I was NORMAL!! Slowly my symptoms returned. I had no side effects from the drug, however, the cost was prohibitive ($400 out-of-pocket).
    I tried an inexpensive antibiotic Flagl, which worked as well. My doctor and I have decided that I will cycle this drug as needed. I am into my sixth week free of symptoms! And, I drink coffee, have a cocktail on occasion, and have been trying fresh fruit (forbidden for years). I must tell you that my anxiety level has not disappeared completely, but I think I might consider traveling again. We are all different, but sometimes what works for one can work for another. Good luck friends!

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  • By Becky Oleson Moderator

    Thanks for sharing your experience with us here, emmszen! I can relate to a lot of what you said, especially the antibiotics treatment. For me, it makes the symptoms nearly disappear when I’m taking antibiotics, but then they return with a vengeance. It is indeed a roller coaster, just like you described. I am so glad you are free of symptoms right now, and I hope it continues. It would be so great if you could travel again! Becky, IrritableBowelSyndrome.net team member

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  • By DorisE

    I have no social life. Especially now I am a Senior. Have other medical problems too. I tell my adult daughters… have fun while u r younger and healthier! I know it would be good to musterup the courage to have a bit more of a social life but my get up and go got up and went, Now its tv in the bedroom, scrabble on my computer tablet and emails.. what dud our grandparents do? By the way, what year was Ibs c ir d ” discovered “…is it a relatively new illness?

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  • By marthaherrera1994

    I am 23 and have been suffering from IBS since I was 14, nearly a decade. I have found a homemade regimen, which is to never get full, but eat constantly, not get out of my comfort zone unless needed, and avoid any foods in high grease or foods that take too much to digest (red meats). I drink Ensure every morning along with a breakfast high in protein such as eggs with turkey bacon (less grease), or oatmeal with bananas. I only leave my house for work and school, but even then I have to miss those due to intestinal issues. I’ve gotten lucky because my boyfriend understands the disease, and even goes as far as to help my mom take care of me when I have a flare up. Instead of going out with friends on a Friday night to get some drinks like all the young people do, we are stuck at home with our cats because of my stomach.
    This month, we are traveling to San Francisco for three days because my best friend is graduating from university. I am extremely nervous! She also has serious IBS, which is a relief as we don’t have to go to restaurants, but the fact that I won’t be in the nearest vicinity of MY toilet makes me anxious. Any traveling tips out there?

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  • By DorisE

    Oh going to SanFrancisco…. we visited there years ago, from Canada, and loved it. I feel for you going thru this and so young. I have an emergency bag I even take if I go to store, rarely now… or any appointments. Its not enough to know there is a washroom nearby… I take an extra pair of underwear, a large zip lock plastic bag, some old clean facecloths that I might have to put in garbage, some wet wipes, some “Imo—-” quick dissolve tablets .. why are they SO expensive? I even got a pair of those plastic underwear as diapers for urine incontinency are no good for diarrhea. Oh and a travel size paper handkerchiefs..just in case no T Paper. I put all in a zip up makeup type case and put in a cute bag that also has room for my purse on top. I also bought a travel size mini deodorant spray for use in a public multiple washroom. Before the trip. I take a regular anti diarrhea pill.
    May I suggest you look over all the meducations you have been prescribed over the years… as waiting til u r my age its almost impossible to remember, to see if any might have contributed to this? Also, perhaps read the fine print even on food and drink packages, candies, gum even toothpaste… everything. I tried eating Activia brand yogurt, had major problems, only to find out people including my daughter eat it to help constipation! Check the “type” of magnesium if any in shown in product as there are I think about eight types of magnesium, some if which cause diarrhea! You mention Ensure… good product but even that can cause issues. Someone gives you some bsking, ask what the ingredients are 😋
    I wish you the best. Hopefully one day they will zero in on causes and cures… people have suffered with this long enough.It certainly is life altering. Please excuse typos, no spell check.
    PS If you do not carry a purse etc a small packsack is good too

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  • By Fostext

    I feel everyone in this post. My social life has suffered a lot over the past few years and I seem to spend more and more time alone.

    My recommendations for anyone who has been struggling for a long time:
    -Be patient
    -Keep experimenting
    -Remember, IBS is really complex, so it has many layers….
    -The Gut-Brain connection is real. So food can make you depressed or anxious and negative thoughts can send your gut into a frenzy.
    -Try probiotics (shelf Stable and a large count)
    -Eat the cleanest diet you can afford and cook at home 90% of the time.
    -Take stress seriously and find what works to reduce it (try natural means first)
    -Find your Trigger foods and sensitivity foods by testing how you feel after eating, by getting affordable/accurate testing done (I recommend both).
    -Go easy on yourself and try to change and heal as much as you can. IBS is like a system out of balance, so try to balance vitamins, social time, meals, time outdoors, sleep, work-life, etc.

    So it’s a long one, but if you want to read about my journey below, I hope that it helps you in some way! –

    “Outline of my IBS C-incomplete Evacuation, Gas-Bloat, & Anxiety-Depression”

    Anxiety seemed to come out of nowhere in my second year of College.

    I went to a Social Worker for some affordable counseling. He taught me how to use a full body relaxation Technique. I got minimal relief from this.

    I eventually tried a few basic medications as my Anxiety increased and my Depression started to creep in. I got off of the meds as none of the 3 worked and the psychiatrist was not helping talk therapy at all.

    Incomplete Bowel Evacuation issues that started and lasted for a few years. Metamucil would help occasionally.

    I broke up with a girl I was falling for, after 2 months of dating. It came out of left field. I started counseling again.

    I got food Poisoning and felt like I never fully recovered despite taking some probiotics after the antibiotics. Found blood in stool at time of infection. Was given Levsin, but did not help all that much.

    Metamucil is not making much of an impact any longer , so I got a Colonoscopy/Endoscopy because things got worse and my Father has Ulcer Colitis (no issues were found from the test).

    Tried the low FODMAP diet (cheated on weekends). Found some relief.

    Extreme Constipation that lasted for a month straight. This was the worst my symptoms ever were. My bowel was irritated and would act up 4 to 5 times a day, yet I had to struggle to go and it hurt. Barely anything came out. It was one of the worst months of my entire life.

    Started taking Magnesium Citrate in large doses, this helped with constipation, but not the incomplete Evacuation.

    Started seeing a Functional Medicine Doctor, did a Toxic Metal Test and did not see any levels that indicating a big problem.

    Got prescribed Linzess after telling my GI doctor how bad symptoms were getting again.

    Stopped taking Linzess as the side effects and pain were awful. I only had one day where things were normal/good.

    Tried an allergy elimination diet and crashed and burned after a few days. Blood sugar dropped one day.

    Started seeing a Dietician and she guided me through an allergy elimination diet. Days leading up to this, I realized that Dairy was a huge issue.

    After a month on the Allergy Elimination diet I started to have serious issues with Gas and Bloating. Once the Month was up I switched to a more strict version of the low FODMAP diet. Symptoms started to reduce.

    I tried P90x for a month straight (mostly to combat Depression/Anxiety) and it did not help. But it did tone me up a bit. I also tried Writing for 70 days straight and Meditation for 90 days straight, but I didn’t get enough relief and depression swept over me again, so i unfortunately stopped.

    I did a Stool test through UBiome, no issues found, but barely had any beneficial bacteria in my gut.

    Did a comprehensive Stool test, again no issues found, but barely had any beneficial bacteria in my gut.

    At this point it felt like my anxiety and depression was two sides of a coin, I could never get away from both, just one. It seems like I’ve been stuck in a funk that gets better or worse depending on the day/week.

    I did a Hair Test through the Allergy Group. They test for Food Intolerances, Toxic Metal level and Nutritional Deficiencies. I found I was indeed intolerant to Dairy, as well as Malt Vinegar/Malted Barley (which is why Beer hurt me so badly), Lead levels and Tin were high in my body (no more canned foods or unfiltered water), and Vitamin D and E were extremely low. This test was awesome! I had no clue I was intolerant to things like Artichokes and Shrimp. And the Vitamin E test through insurance is like $400. So paying $100 to the Allergy Group, plucking a few hairs out and having results in 10 days or so was great! I wish I did this at the beginning!

    I’m currently still not drinking beer or caffeine. I also cut out sugar and am following a Candida protocol (as I have non-athlete’s foot fungus on my toe nails, a thick white film on my tounge, and bad fatigue/brain fog, in addition to the years of stomach issues). I’m not convinced that I have a Fungus/Candida issue, but it can’t hurt me to follow this, as I’m getting more Probiotics that I have in years and I’m eating a wider range of whole foods and healthy proteins/fats/Veggies.

    I think my symptoms are the best they’ve been in a while. They aren’t perfect, but I’m making some progress. I’m currently trying Effexor, as I’m still having large scale issues with Depression and Anxiety, and that could be what’s affecting the IBS symptoms still, despite eating a clean diet.

    I was seeing a Cognitive Behavior Therapist who specializes in IBS for about a year, and it did help me a bit with symptoms, but I am discontinuing, as sometimes I can do all the CBT exercises in the world and I still have issues with my BMs. I think CBT is a good longer term approach to re-wiring the brain to not jump to negative conclusions.

    I also just started an online 6 week course called “IBS Warrior”. It seems like a really cool course that focuses on 51% Diet and 49% mind set. It’s very comprehensive and I think I will learn a lot!

    My social life has diminished as I don’t drink any longer and I’ve gotten more introverted and also more depressed over the years. The unpredictability of my stomach also makes it hard to want to make plans. But I have to say, besides the gas issues, I sometimes take just two poops a day. So as long as I can let some gas out and take another BM after work, I can sometimes go out for a few hours at night to see a movie/band/concert/meet for Tea.

    I know that my stress/Anxiety/Depression is driving a lot of my issues still. I still need to work on how fast I eat my food as well as how much fat I eat ( I love Seeds, Nuts, Avocados, Olive Oil).

    I hope the Effexor can help with my baselines Anxiety and Depression. I’m also trying to activly eat slower. I’m pumping up the Probiotic count and found one that works somewhat well for constipation. I also hope the 6 week IBS Warrior course helps with mind set and food habits, travel, being social, being able to date again, etc.

    I will continue some form of talk therapy after the 6 week course. I intent to keep taking larger amounts of shelf stable probiotics. I also will probably do the “Allergy Group” Hair test again to see if any of my intolerances have changed, if my Vitamin E level has improved and if taking activated charcoal has removed some of the Toxic Metals from me.

    I also struggle with feeling awake and rested after sleep. It’s hard for me to sleep for a full 8 hours. And I usually feel drained regardless. I also don’t give myself the time to sleep enough on work nights, so still struggling with that.

    I must say overall, the changes I’ve made and the experiments I’ve tried with diet, supplementation, medication and lifestyle have helped. I’m not where I want to be (as close to symptom free as possible), but when I look back to where I was a year and a half ago, I’m in a much much better place. I hope to keep making progress and I hope if you are reading this that it gives you some hope or even some ideas on things you may want to try out.

    And feel free to contact me with any questions. Best of luck on your journey to relief and recovery!

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