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The pain !!

Hi, I was diagnosed with Crohns in December 2018 and was put on prednisolone for 9 weeks. I haven’t been on any medication since coming off of them approx 6 weeks ago when I was told I was potentially in remission. However, the past few days I have experienced the mild stabbing pain in my lower right abdomen and today I have had the WORST stomach pains I think I have ever experienced - intense gripping and burning all around the stomach, especially the lower abdomen. Also back ache and numbness in the top of my legs. I’ve been shivering cold, and have had to take numerous trips to the toilet, once with some blood. So now I’m assuming I’m not longer in remission!! 🙁 I have also been told I may have ibs.. is anybody else in this position and struggles to know if it’s a flare up or IBS? And also does anybody else experience stomach cramps so intense it feels like your whole insides are about to explode and fall out !? Also with very very loud gurgling/popping noises? I feel really alone as nobody quite understands the pain it causes and how it makes me feel mentally too. So would be great to hear from someone who experiences something similar. Thank you x

  1. Hi @aax0987,

    You are certainly not alone. I was diagnosed with Crohn's in 2011 when I was 21 and everything you are experiencing, I have experienced. I too was diagnosed with IBS in addition to IBD.

    It's always hard to differentiate what is what? Could it be IBS or am I flaring from Crohn's. Definitely blood, at least for me, was always the deciding factor. I knew if blood was involved that I was flaring.

    Literally, every symptom you are experiencing I went through too. So don't think you are alone. It's hard and I would suggest telling your gastro your symptoms and urging for him to confirm that it is a flare so you can get proper treatment.

    One of the hardest things of IBD is the feeling of isolation. No one truly understands unless they have it and it is so hard to meet people organically that have it. I certainly haven't and that's why i relied on social media.

    Deep breathes. Things will get better, it's just a matter of finding the right treatment. That in it of itself can be a journey but once you get there, it makes a world's difference.

    Have you tried changing your diet and perhaps trying cbd or hemp oil? I've done this and it has helped me tremendously. I also have celery juice every morning which has been so helpful.

    Feel free to message me whenever if you'd like!

    Always dancing,
    Elizabeth (team member)

    1. Hi @aax0987 ,

      Your symptoms sound all too familiar! When I first got really sick I thought I had serious food poisoning. I later came to find that most days without medication and about half of the days with it, living with Crohn's for me tends to feel a lot like having food poisoning or the flu all the time except there's blood and I feel as though my belly button is going to burst open spilling my guts out. Too much? Maybe. Fun fact: the chest bursters scene from the Alien movie was actually based on the writer's own symptoms from Crohn's disease. So that feeling that your insides are going to explode is very common in many!

      I have been told that I do have Crohn's and that I don't by a few doctors now. My insurance coverage for the year is almost maxed out. My family doesn't understand that I literally can't eat any of the food they make or I will be violently ill. And my social life, practically nonexistent. But I am slowly getting better and re learning my body's ways of telling me when something is wrong (squeaks, gurgles, machine gun noises, fevers, cold sores...) Isolation isn't fun and it can really feel like a ball and chain around the ankle but it seems necessary in order to learn how to live all over again with this exhausting and excruciating disease.

      It really takes it's toll emotionally and physically every day. Not many people are comfortable with the kind of conversations that need to be had either. You are not alone though and this is a great place to ask those strange or gross questions without disgust or judgement. Most of us can probably relate or even have an embarrassing story to go along with it.
      On that note, I wish you the best of luck and don't hesitate to reach out!

      1. I've had those symptoms for seventeen years, but on my left side. It's really hard to be around people, or even function, in that much pain. My insides feel like i've swallowed concrete and poison at the same time. When stool passes through my left side I get chills, sweat, nausea, screaming bad stabbing pain, gurgling noises, dizzy, and weak. It is terrifying and no one will listen to me about it. You and I are not crazy ... we have diseased intestines that apparently the majority of the medical establishment either is clueless about or in denial about.

        I've kept track of everything I eat for the last fourteen months and I still can't connect the dots. Although, I KNOW I can't eat anything with apparent fiber. I even cut out dairy and it's having no positive effect that I can tell.

        I hope that we find some relief somewhere ... you're not alone.

        1. This sounds rough, @lilren. I have always had left-sided pain as well. Little is seen when imaged. I've lived like this for years. I'm so sorry you're going through this too. We're glad you're a part of our community.
          Kelly, Team Member

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