It

It’s “Just IBS”

To say I was “diagnosed” with IBS would be an overstatement of epic proportions. It sure didn’t feel like a diagnosis. At least not like the ones I saw on TV. There was no dramatic music, no montage of tests, no sigh of relief and discussion of next steps – just a hastened doctor who poked my stomach and said “it’s probably just IBS.”

And at this point, if one more doctor tells me it’s “just IBS” I might punch them in the colon. I don’t consider myself to be a very violent person, but hearing that phrase lights a tiny fire of fury in my tummy. Of course, it doesn’t help that when I hear these words, I’m typically in excruciating pain, so the last thing I want to hear is it’s “just” anything.

I’ve had digestive issues for almost 20 years. Growing up, I’d spend countless hours holed up in the bathroom, hunched over in pain and clueless as to what was causing it. It always seemed to happen at 2am, too, which of course stressed me out even more thinking of all the sleep I was losing. Part of me appreciated the evening flares, though, in comparison to other times of the day – I’d have full reign of the bathroom and no one would stand awkwardly in the doorway asking “y’okay?” But every now and then, when the pain seemed especially incessant, I’d call for the comfort of Mom, even though there was nothing she could do. To this day, I don’t fully understand the purpose of a warm washcloth, but my mother made sure to give me one every time. And it was somehow comforting.

When you’re 12 years old, your concept of “normal” is strongly based on what other people tell you. If your parents don’t seem concerned with your bathroom habits and kids at school are certainly not discussing the topic, it’s pretty easy to conclude that your intense abdominal pain and diarrhea is just a “normal” part of life. But after a while you start to think, “How bad does the pain have to be before it’s “worth mentioning?” How much time in the bathroom is considered “acceptable” for a growing girl?

But IBS still never crossed our minds. Even after I mentioned it to a doctor, it was years before any conclusions were drawn. As time progressed, it felt as though it was simply a diagnosis of elimination. Doctors blamed enzymes, imaged me for a contracted gallbladder, tested me for Crohn’s, and of course, suggested a psychologist, until finally all they could say was “it’s probably just a spastic colon.”

Silly me and my dramatic overreactions! It’s just a spastic colon. Phew!

But for some reason, assigning it a flippant title didn’t make it go away. And it still didn’t make me feel validated with my symptoms.

And I still struggle to feel like my experience is legitimate. Sometimes I feel like I should have more pain or more diarrhea, like not having a flare for a couple weeks means that I’m fine and that the previous 15 years were all in my head. I still feel like people think I’m a hypochondriac when I say I have IBS, like it’s not real – just something I tell myself to feel better about my excessive flatulence.

But it’s real. And more importantly, I’m finally getting to a point where I just don’t care if others believe me. “You do you” as they say. And I suppose I’m starting to live by those oh-so-elegant words of wisdom.

Comments

View Comments (16)
  • DorisE
    9 months ago

    Oh gosh. As new to this amazing website I am sorry, been posting all over the place… I think I will make a map.
    Where section would the following be discussed?
    …. although it is apparently only available for c diff, I would gladly try a fecal implant… or whatever the medical term is. 80 to 90 per cent success rate. I read that one has to have the slurry as an enema or take 59 pills! I volunteer!
    Desperate in Ontario

  • markph
    10 months ago

    I was diagnosed with IBS-D 6 years ago (Terrible Pain). Although, I recently went to the Mayo Clinic and found out I have Bile Acid Diarrhea. Hey, why not get tested for it, Mayo Clinic has a stool test. It’s estimated 30% of IBS-D patients suffer from it. (Personal I don’t think BAD should be considered IBS, in Europe most doctors would not consider BAD to be IBS)
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3002596/

  • Hannah Noonan moderator
    12 months ago

    Hi @amartin1351, figuring out what treatment option is best can be so complicated that’s for sure! I hope you start to get some relief with the probiotic treatment soon – Hannah (www.IrritableBowelSyndrome.net Team)

  • DLCogg
    1 year ago

    I am a 62 yr old woman that has dealt with IBS all her teenage and adult life. Yikes, that’s a lot of life to live in pain, humiliation, and at times, denial. IBS has even contributed to an eating disorder, as I have thought of myself as “fat” all my life because of the constant bloating, gas,and stomach pain. With all of that said, I want to encourage all of you reading this that there is life out there, if you continue to fight, to take the time to find the answers, and listen to YOUR body, as each body is differently created.
    I also want to encourage you to seek the help from a qualified nutritionist that deals directly with IBS and the FODMAP diet plan. This elimination diet plan, under her supervision, helped me pinpoint my trigger foods, and WHY they were triggering my IBS, something NO DR could seem to tell me. I am off all prescription medications for IBS and am managing chronic migraines so well my neurologist is in shock! It has taken a couple of years to accomplish, along with strict sleep and travel schedules, but I have decided to place myself, and my health, first. It has paid back tremendously. Friends and family ask me what I am doing to look so well, and I tell them I am taking my life back!
    Keep moving forward, keep positive, even though there will be flare-ups, and keep reading and educating yourself through excellent sites like IrriatbleBowelSyndrome.net~

  • Chris Hall moderator
    1 year ago

    Wow, @dlcogg, that is awesome! It’s so great to hear that the suffering of the past seems to be staying in the past. Being your own health advocate is such an important thing to do. It looks like you put a lot of hard work into getting better and I’m so glad it’s paying off. Thanks so much for sharing this and for your positive words. If you’re interested, we’d love to hear more about your story! You can follow this link to submit your story to be featured on our site: https://irritablebowelsyndrome.net/stories/. I’m (and I’m sure others are) curious to know more about how you found relief. Thanks again! – Chris, IrritableBowelSyndrome.net Team Member

  • MichelleTohi
    1 year ago

    Whew Thanks IBS im on line xx Might keep your password for a bit lol

  • Hannah Noonan moderator
    1 year ago

    It’s unfortunate that so many of us can relate to Stephanie’s story MTohi, but I’m so happy to hear that you have feeling comfortable with your new doctor. I really hope they can help! – Hannah (www.IrritableBowelSyndrome.net Team)

  • MTohi
    1 year ago

    I could really relate to your blog in terms of Drs etc..
    Loved your comment and sarcasm re irs just a colon? So not important.

    We are hypochondriac’s ..i started doubting myself both with ex Dr and new DR i saw just last week she is fantastic actually validated me, reviwed my pain meds and I think a bit shocked at my explanations as to why I just had to leave .

    I said I sent an email basically pleading with her for something more effective as codeine of 15yrs for severe sciata just not working. And severe pain in stomach from 24/7 bloating and/ or the excruciating pain accompanying duatehha where at a 12..i craw on hands and knees.

    Then the lower back/ leg pain it’s more deep than sciata. I put pain balm in and I feel all my muscles are badly bruised.

    I went onto say I can’t handle and I can’t live lije this long term. Ending with please help.

    Well response was No there isn’t anything else ( she completely misinterpreted me thinking I want sleeping pills)

    I tbink you just have anxiety about your upcoming op ( removal of ovary and looking in my stomach)

    So come and see me after your op and we do something about your moods.

    Honestly I just cried I had 5 days to go until op.

    I responded with a very angry email whilst in serious pain. So a bad move really. Not good to respond in anger while in pain and exhausted.

    Just confirms their diagnosis.

    So yes New Dr not impressed I believe.

    New Dr letter to me with results from all these tests ..bloodctest. and urine test I needcto do as have high haemoglobin ( something else I’m googling)

    Well started with was lovely to meet you last week Michelle.. Just those words u don’t know how much they meant to me. How much anxiety about a new DR and how I will be treated, just lifted from my shoulders. I know lol it’s not a cure. But it’s made a big difference

  • MTohi
    1 year ago

    Sorry about spelling. Can’t seem to edit.

    Lol and its only 8.25pm in NZ not 3.23am

  • KatieM.
    1 year ago

    I have had IBS for 25 years, since they took out my Gallbladder. It is the most painful, embarrassing,and horrible disease. It has completely altered my life as I never know when or what will set it off and from the time I get the first cramp I have about 5 minutes to find a bathroom! I hardly ever go out to eat because of the anxiety it causes as to if it will happen or not. I have been on a medication that does curb it a lot but still not 100 percent. I am highly allergic to a lot of foods and can’t eat veggies unless I am home because it is sure to happen. I should way 100 lbs with the amout of time I spend in the bathroom. Very frustrating and also told it’s just IBS or caused by anxiety. You are certainly not a hypochondriac. Let them spend a day in our shoes. It basically controls your whole life!

  • peg215
    1 year ago

    I had a gall bladder removal too. It made it so much worse. I take meds for bile salt issues now.

  • peg215
    1 year ago

    Oh my gosh, you sound so much like me. I just feel like after 20 years we should have more answers. Like, do every blood test you can think of this time, not one every visit because I can only get appointments with you every 4 months! Do every test you can think of. Figure this out. I’m doing every thing you told me to do and I still have to plan my grocery shopping around my symptoms, stop at the bathroom half way through, or make my husband shop. Life is miserable.

    Depression and anxiety – of course I have them! Who wouldn’t? If you never know when that very brief warning is coming, life is more like a hermit. Honestly, I don’t want anymore prescriptions, I take 15 a day. I just want to live a semi-normal life.

  • KatieM.
    1 year ago

    Thanks Chris! I will read the article.

  • Chris Hall moderator
    1 year ago

    Hi KatieM,

    Thanks so much for commenting. I’m so sorry to hear how tough it’s been on you, but glad to hear that medication is working for the most part. We’ve heard a lot of feedback from the community about the link between gallbladder removal and IBS. We actually have an article on that topic here: https://irritablebowelsyndrome.net/clinical/gallbladder-removal-ibs/

    Regarding the troubles you have with certain foods, have you tried speaking to a dietitian or nutritionist? Some folks have found this to be very helpful in determining a diet that reduces IBS flare-ups. Thanks again for taking the time to comment!

    Take care,
    Chris, IrritableBowelSyndrome.net

  • amartin1351
    12 months ago

    I was diagnosed with IBS at 18 and had my gallbladder out at 23. I found out the medication I was taking for my IBS was a big no no for pregnancies so I stopped taking it and have been trying to find other solutions. I always feel like my doctor thinks I’m exaggerating the pain. As of now they think being on a probiotic will fix all my problems… not working

  • HessP moderator
    2 years ago

    Hi Stephanie!

    I can totally relate to your story! Feeling like it’s all in your head, but then having to reassure yourself that you actually DO suffer from something is a well-known game for all of us IBS sufferers. You painted the picture so well and I love your sense of humor! Thanks for sharing!

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