Unless you have IBS, then you don’t understand

Since I was a child I have had problems with GI issues. In those days, when my parents took me to the doctor, they were told I had “balloon belly” and there was nothing that could be done.

Going to school with no control over bowel movements is no fun. I was bullied and physically assaulted by children, to the point I had to be supervised constantly by teachers to protect me.

I suffered from asthma and eczema as well, and my mother tried exclusion diets to try and get some relief. At one point I was on pumpkin, baby rice, and goat milk.

I have been to multiple doctors to try to find out what was wrong. For the past six years I have been told I have adhesions, intermittent intussusception, infections, cysts, polyps to name a few. I have been poked, prodded and tested, and six years ago was told I have IBS.

Diagnosis with marginal help

With this diagnosis I was given antispasmodics, which marginally help. I have tried mild antidepressants, also marginal help. In fact nothing I had from the medical profession has helped.

In the last six years I have been taken to hospital 20 times on morphine to control the pain.

It is the pain that for me is the worst symptom. I am in pain every single day. It goes from a dull ache on my left side at its best. Through to a pain which gradually increases to intense spasms in lower left abdomen radiating to pain in lower back in the kidney area. In some cases, I can be walking, and will get an intense stabbing pain which will stop me in my tracks, doubled over in agony, not able to walk.

The different types of pain, are not always attributed to a particular BM, food or anxiety level.

I have found through symptom tracking, that caffeine was a major trigger. Eliminating that has helped me. Then I found dairy was another major trigger. Cutting this from my diet has significantly reduced my trips to the hospital, but I still get the daily pain and symptoms.

IBS roller coaster

The bowel movement side of IBS for me is a roller coaster ride. I can go for days with regular BMs, but lots of gas, and still the pain. Then I can have constipation, which I can only describe as needing to pass a tennis ball. This constipation comes with intense pain, and long times on the toilet, with urges to push with nothing coming out. Once this “tennis ball” has finally passed, I then get diarrhea. This can be 15-20 times over the next 1-6 hours. Then I can go back to ‘normal’. But my normal is large BMs at least 1-3 times a day, with a burning sensation coupled with cramping just below belly button.

This disease has affected every aspect of my life. It has affected my ability to make friends, as I was isolated and bullied as a child. It affects my social life as I worry when eating out that something I eat will trigger an episode. It has affected my work when I need to spend hours in the bathroom. It has affected my finances due to the hefty medical bills.

Since my diagnosis, I have not found the doctors very helpful. I get platitudes and made to feel that my anxiety is causing the problem, rather than the problem making me anxious that I will soil myself in public.

I try my best to be upbeat, and not let this disease get me down, but it’s hard, so hard not too.

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.

Comments

View Comments (7)
  • saracouch123
    1 year ago

    Oh man IBS has took over my life completely i’m bedridden a lot and when I have a good day I do anything positive and productive I can. Does anybody else get really constipated or get trapped gas and then get a really loose stool?

  • nlpixie author
    1 year ago

    Hi Sarahcouch.
    I am so sorry to hear that IBS disease is affecting you so much. I have been in the same position and have very similar symptoms where I am constipated with excruciating pain, then pass a very compacted stool, followed by large amounts of diarrhoea.

    I am finally getting my iBS under better control and the biggest thing for me was keeping a journal. I tracked what I ate, When I ate, how much fluid I was drinking, what mood I was in, what had upset me or given me joy, What medication I had taken. The other thing I tracked was bowel motions using a scale from very constipated to very loose. I tracked the timing of all of these.

    It was hard work carrying this around with me to take these notes, but this gave me that ah ha moment which has helped me identify my key trigger foods. For me cutting out caffeine, then dairy and more recently onion, garlic and gluten is definitely helping. The amount of water I drink and the time between each drink and getting this more even is also helping me too.

    I feel like I have more energy and the gas and pain had definitely reduced as well which has dramatically improved my way of life. I am having mor pain free days than painful days, and BMs are now more consistent.

    That journal identified triggers, especially gluten, that I had been tested for before and told was not an issue, so I had never put pain+gas=gluten as a trigger before. For me dairy was such an instant response, I could relate the symptoms to the amount of dairy I had eaten. But for gluten there is a delay or about 12 hours between consumption and the symptom, so without my journal I would not have been able to identify this.

    I am really learning to listen to my body and work with it.

    I know when the pain and time in bathroom get you down that you cannot see the light at the end of the tunnel, but try your best to enjoy what you can.

    Try to identify your trigger foods and eliminating just one to start may give you the relief to investigate more, and take back control of your body and life from this disease.

    Good luck, and let us know how you get on.

  • Sheila Perry
    1 year ago

    I can completely identify with your feelings even though pain is no longer a primary symptom. I have not enjoyed a cup of coffee for years and am able to treat myself to a mild cup of green tea only on occasion. Periodically, rock hard movements turn into mush and an overall sick feeling. It is systemic rather than restricted to “the gut”. At such times, I become extremely depressed and even desperate. I begin to feel that life is definitely not worth living. Eventually, my body seems to straighten itself out for while and the hard times are forgotten until the next time. I was addicted to Lomotil for over 40 years so try very hard not to resort to that particular remedy. I instead take a low dose of Prozac and Desipramine on a daily basis. I also follow a modified Fodmap diet and avoid all rich foods, caffeine, sodas, large meals and legumes. I snack on peanuts and chocolate chips quite regularly. I should probably abstain from these latter two snacks and maintain a food diary. I am discouraged. I hope that you are eventually able to find relief. Thank you for sharing your story, a testament to your courage and determination. You are an inspiration.

  • nlpixie author
    1 year ago

    Hi Sheila, Thanks for the kind words. It’s actually nice to know someone else has the same symptoms as me. This disease seems to be different for everyone, so no two stories are exactly the same. My experience with treatment medication has been mainly pain relief related, that seems to be the normal treatment in New Zealand.

    I have researching to FoDMap diet and been reducing wheat from my diet, and also onion and garlic, and this seems to be helping. The pain has definitely reduced and for the first time in months I am getting a goods night sleep.

    I do not want to get hooked on medication if I can and want to try changing my diet to a point that the symptoms are manageable, if not under control. I have found another doctor who focuses on gasto type problems and so I am seeing them in the new year, so fingers crossed, they can help me work out a good management plan as well

    This website has been so good for me as I get a chance to talk to others who have had the same challenges. The kind words give me strength.

  • Chris Hall moderator
    1 year ago

    Wow, @nlpixie! You’ve certainly had quite a journey. I’m so sorry that the search for relief has been so arduous. This community knows that it’s hard to not let IBS get you down. This community is here for you so that you don’t have to go through the unhelpful doctor appointments, anxiety, and all the other troubles alone! I saw from your status update that you’ve found a clinic that specializes in IBS and other gastro issues. That’s great! Please keep us updated. It’s really wonderful to hear that you have such a flexible work environment, too. Having an understanding manager really makes a difference. Thanks so much for sharing your story, and I hope you’ll be getting some answers soon! – Chris, IrritableBowelSyndrome.net Team Member

  • kanagurl64
    1 year ago

    Hi your symptoms sound similar to mine when I was diagnosed with IBS. Turned out I had very severe diverticulitis and had to have my sigmoid colon out and that really has solved most of t m problems. My dr just brushed me off with the IBS diagnosis but since there can be so many things going on in there that we are not aware of you need to be vigilant about getting a diagnosis. It was difficult for me to get diagnosed. Finally had a colonoscopy A colonography and a barium X-ray. I feel my dr kept brushing me off with an IBS diagnosis when my bowel was actually in big trouble. Pain on your left side is where your sigmoid colon is. I’m very happy without mine. Good luck in your journey. Kanagurl

  • nlpixie author
    1 year ago

    Hi kana,

    I have been tested for diverticulitis. While. Have the diverticula pouches in my colon, I have no signs of infection. Both stomach and bowel cancer run in my family so I get a colonoscopy every two years to get polyps removed and check their have been no other changes.

    I have had CT scans wth contrast as well to get a check of other parts of my system. I have small gallstones, but they are not large enough to be affecting my system.

    The last CT scan really did eliminate pretty much all other causes for my symptoms apart from IBS. So now I just have to accept that this is what it is and now fight this disease and listen to my body and work with my body to make it work as best it can.

    I am so glad that you were able to get surgery that has given you some relief.

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