IBS frustration - venting

Hey,

I'm feeling really bummed out (haha) that I can't go places because of Irritable Bowel Syndrome. Or, I could, of course, but the fear of accidents is just too intense! My stomach can get upset when it wants to, where it wants to, it doesn't ask for my permission. It also doesn't really give me much warning beforehand..

I think this is somehow connected to my PTSD/(social) phobia/whatever because it happens most times when I plan to go out.. My therapist has thus adviced me to have a movie night or something with a friend who knows of my issues, and agree that I can go to the bathroom a million times if needed and my friend won't laugh or think badly of me..

Well, I've been putting the movie night off for months - yes, months! I'm just crippled by the fear of shame.. I'll bite the bullet one of these days, now I just needed to vent my frustration out.. Thanks for listening!

I have ulcerative colitis, I understand the fear. I've never had an accident but sometimes I do a couple things for "insurance" when I'm flaring and need to or want to go out.

1. Underwear liner with odor control
2. Imodium/ anti-diarrhea pills (for some this is too strong and can cause bad constipation)

Also, I highly recommend a digestive enzyme. I personally take DGL (Deglycyrrhizinated Licorice) in the form of a chewable tablet. I've stopped painful flares in it's tracks by sucking on just a quarter of a tablet. Works for me within minutes.

People are actually surprisingly understanding though. IBS is such a huge problem nowadays. Even people who don't have it themselves have loved ones who they have seen suffer from it so they are very sympathetic.

Just make sure if you go to the concessions to pick something that's typically a safe bet.

And if you do end up with sudden uncontrolable stomach pain there is no shame in calling it an early night.

D.o.a, we have met before about our bowel problems!

I understand exactly what you mean. My "IBS" (officially diagnosed, but getting a second opinion soon) makes me super nauseous sometimes. Very rarely have I thrown up from the feeling, but the fear of throwing up/embarrassment actually makes the nausea even harder to deal with! The anxiety and IBS bounce off of each other like a game of ping pong!

I suggest taking your time with this one. Don't feel bad if the combination of IBS and fear keep you bound, or if only one of them keeps you sitting still. It's not your fault. Take baby steps and find new ways to deal with your anxiety around this if it will help. Also take baby steps with your IBS as well: find out your triggers, how to estimate your flair ups, and what to eat. I just started reading a DBT book focused around anxiety disorders and it has already came handy in several situations since then. I'm only 20 something pages in. Unbelievable.

Have you tried any medications to help you deal with your IBS? They have helped me before in the past tremendously.

I don't have any general tips for dealing with both of them in public. I'm still working on it myself. Hoping that you feel better soon!

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My son has IBS and is on the FODMAP diet. Are any of you on this or a different diet?

What is FODMAP?

d.o.a., what about planning something that would not mean being away from home as long as a movie would take? Can't tell you the number of times I've had to cancel plans because I could not get off the toilet.

As for fear of accidents... What about incontinent underwear? My mom used to wear them for her IBS if she was going to be somewhere that she might not get to a bathroom in time. I keep a change of underwear in my car and my desk at work in case I have an accident. It also helps me to locate the nearest bathroom if when I arrive some place new just in case I need it in a hurry.

https://stanfordhealthcare.org/conte...fodmapdiet.pdf

The gastroenterologist told my son to do this diet and it works. Unbelievably, it is garlic and onions (even powder) that really does the damage!

I am an IBS sufferer. The FODMAP diet is the best thing that I've found. Of course, I still have problems. I like some foods too much to give them up entirely. My situation is made more complex as I'm also glucose intolerant. I can't consume anything with a lot of fiber. I walk around with Bean-o and lactose pills in my backpack. Slowly, I have been adjusting to a strict diet with less fiber and less carbohydrates. My adjustment period has been slow. A lot of trial and error is involved also. I empathize with you. Hang in there and stick with the FODMAP diet - it works!

My son is also lactose intolerant. The poor kid has to cook all his own meals and pack his lunch every day. He lives on chicken and rice.

I also have IBS and UC. I'll investigate this diet. Thank you for sharing it.

I hope you feel better. I, too, carry a change of clothes with me. It helps even if you never need them.

Immodium - i never leave home without it. But i also buy dulcolax by the jug. I have to eat very cleanly and simply. Restaurant food, even like whole foods prepared food, i have to keep to a minimum or else its heartburn city and worse.

Story of my life right there, Unaluna -- Immodium is my very best buddy for months on end now. Really really bad flare that began right after Christmas and is still going. Yeah, I know: I need to get to a doc and get some Librax & Hyoscyamine, but. I hate going, and in fact don't have a Primary doc here yet.

YES to the spare changes of clothing! I used have two in my car & one in my office back when I was having horrible flares at work. And more than once I needed two changes to get thru the day -- so humiliating even if no one knew it but me....arrgh

I own some Dulcolax but it's prolly expired by now lol. Mom has diverticulitis w/constipation, so when she comes up here SHE is the Dulcolax queen lol.

~sigh~ T'aint no fun, that's ferdangshure.

Chyia, gastrolenterology on the hoof

Definitely know how much IBS sucks. It can be hard to explain to people when you're in pain and stuff, or feel like you have to make excuses for yourself. But the best thing you can do is learn about the illness, and YOUR illness, as in what helps/hurts you. I created a routine of things to do to prevent or recover from flare ups. Yoga, taking naps, herbal teas (hot or iced), meditation or visualization exercises were beneficial to me, but do what speaks to your body and mind. Probiotics and soluble fiber tablets (not insoluble, big difference) have also been helpful at "regulating" things. Controlling anxiety is huge--you said it yourself, it's the threat of going somewhere that can trigger it. Many people think IBS is caused by stress, which is not true. Even though stress can commonly set it off, it is a real, physiological problem and anyone who tells you otherwise, like "It's all in your head" or "You realize you are doing this to yourself?" is ignorant. However, I found that controlling worry, panic and fear was immensely helpful in reducing symptoms, especially by creating an exit plan, getting places early and knowing the layout of the building, taking routes with many places to stop, etc. The other thing was, when I finally disclosed my illness to friends, I never got anything but compassion. Most of the people knew someone with it, (I live in the US where 20% of people have been diagnosed with it...to say nothing of all the undiagnosed cases). Some even had it themselves and didn't tell anyone for the same reason. Never know who will surprise you, if they are a true friend then they will be patient and non-judgmental. Take care!

Just get a second opinion if you are not happy with your diagnosis.. Best wishes

I used to be troubled by IBS so I can and do certainly relate. Hope the replies help you.

I have IBS-D as part of my POTs and fibromyalgia. I take 75MG of amitriptyline and it seems to work fairly decent. I can eat out and not have to rush directly home anymore. I'm also going less so I'm not consistently in the restroom.

I don't know what medication you're on, some of them make IBS even worse. Sometimes if I'm not careful my IBS-D
Can turn into constipation. It's really about finding the right food/meds combination.

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I have IBS-D, which has ruined a big chapter of my life as a young person. The worst thing doctors tell me is "just stop stressing." I suffer from mental health problems which include severe uncontrollable anxiety so I can't just not stress.

It is something I am quite shamed for and I'm told that my IBS is my fault because I get too stressed. I understand where you're coming from.

It is hard to control stress, fear, anxiety. But my IBS was actually triggered by an antidepressant so I feel a bit lost.

I have it too and it is a result of PTSD and severe childhood trauma, its actually very common. Brain causes bowels and digestive system to overreact, becomes chronic. Im also lactose intolerant

Wow, I forgot about this thread and now find so many amazing replies! Thank you all so much for taking the time to share your experiences and advice, you're the best

The only reason I survived my last job (which I had to give up years ago due to IBS) for as long as I did was Imodium. It caused quite intense pain, gas and constipation, but at least I could stay at my desk when I needed to. However, it stopped working for me before long. Recently, I've tried it a couple of times again when I had errands I simply needed to get done. Once, it worked fine, but another time, IBS-D hit me with a vengeance the next day.. So, on the long run, I can't rely on Imodium to get me through life anymore

I also once tried medicine that was supposed to relax the mind as well as the bowels, but it relaxed my throat, too, so that I felt like I was choking, and made me feel disorientated and 'slow' for a whole night..

I've been following the FODMAP diet for a while and feel it helps a little, but it's really discouraging when I have to socialize and BAM! Instant stomach upset no matter what I've eaten.. Makes me feel really depressed to be on such a restricted diet that in the end, still doesn't provide me with the confidence and feeling of safety that I need..

I actually believe that for me, my IBS is mainly due to emotional trauma.. My dad didn't love me, and I feel the fear of not being acceptable to any man ever is coming through in these symptoms..

To that end, I feel it'd help me to know if anyone here (ladies especially) have been able to find loving partners even with their IBS.. Of course, there are no guarantees, but I feel it'd really help me to know there is at least hope - that I won't necessarily have to spend my whole life alone because of this awful condition..

I have Crohn's and ibs and understand the fear. In fact I have fistulas which continually leak fecal matter and I have had accidents. When I am in a flare i wear depends and I always bring a bag with change of pants, etc even when not flaring. I also time my eating around when I have to go out.