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Never been properly diagnosed….

I’m feeling fed up… I believe I’m having a flare up as it seems to be similar symptoms each time but the consultant is never really much help.

Abit of back story I was diagnosed with gastritis and had around 7-8 ulcer in my ileum back in 2020, Consultant said it could be the starting of Chrohns but it was hard to differentiate so I was told it was a form of IBD. I was prescribed some seriods which seemed to help and was referred to a dietician.

Since then I go a couple of months being absolutely fine maybe the odd tummy ache but I put that down to IBS but then it starts all back again..
Starts with a noring pain in tummy and slight urgency to go to the toilet then I get a low down tummy ache on the left side which radiates into my back. My consultant thinks the back pain isn’t related but I only ever get pain in my lower back when I have tummy problems. The pain in my lower back is worse this time it’s like a stabbing pain… has anyone else experienced this? I also get random joint pain all over my body in my knees, wrist and hips. I also get a stinging feeling in my hands and feet.

I’m going to the toilet more often which seems to relive the pain slightly, but no blood or diarrhoea. But I have never had that.

In the night I wake up with lower left tummy ache and tingling down my legs… again they think it’s not related. I’ve had an ultrasound on the whole left side which showed nothing so I can only put it down to IBD?

Can the ulcers come back? Will I continue to have flare ups? So many question but I can never seem to get any answers…

I have had every scan Ct, MRI, ultrasound but nothing shows.

I’m being referred back to the consultant and I’m currently taking Omeprazole. But I’m starting to get depressed because I’m in pain everyday and I just want some solid answers.

Thanks for reading hoping someone can relate.

  1. I'm so sorry you are going through this. There is nothing worse than feeling sick and in pain, and not have any answers from doctors. Of course, I am not a medical professional so I can't diagnose you but I can speak from my personal experience being diagnosed with Crohn's back in 2011.

    I would ask for a colonoscopy with biopsies. It is important that they determine for sure if in fact you do have IBD or not. You need solid answers. Because it is very well that you may just have those ulcers which are causing the pain.

    As far as lower back pain, I get horrific lower back pain when I am in a severe flare. It is definitely a part of the symptoms. Joint pain is also something I deal with during a flare.

    Have you had blood work recently? I wonder what your CRP levels are. That shows inflammation in the body and if it is elevated it can be a sign of IBD.

    I hope this helps some. Overall, you must advocate for yourself and be firm in asking for a colonoscopy with biopsies. Sometimes doctors don't get things done without a little pressure.

    Hugs, Elizabeth (team member)

    1. thank you for your reply. So they did take biopsies of the ulcers during my colonoscopy and the conclusion was colitis but could be the starting of crohn’s. So I never got a definitive answer just said a form of IBD the consultants haven’t been helpful at all. The doctors tested my stool for h-pylori which came came back clear but not sure if that stool sample would have showed inflammation??

      Thank you for your suggestion I will contact the doctors to get my bloods done and hope my referral comes through quick. Seems like when I have it it’s goes on forever and can’t see a light at the end of the tunnel…..

    2. You are so welcome.

      I don't know why they say a form of IBD? That's like if you went to the doctor and they said you have some virus. Instead of saying oh you have Covid or you have the Flu. That's incredibly frustrating. IBD can be Crohn's, Ulcerative Colitis, Microscopic Colitis etc. They really should be giving you a true diagnosis not just an idea of something.

      Also, you can have your stool tested for Calprotectin. That also shows inflammation in the gut. I actually just had it done last week.

      Overall, it's important to push your doctors for a clear diagnosis. You need to know what is going on in your body so you can take the appropriate actions for the best treatment. Did they give you any meds?

      Elizabeth (team member)

  2. my colitis in remission since 14' can you please tell me your diet, be specific, I want a lot of details I have been in the dark place you are, I have cried and I have prayed.

    and their is a medication out there that you will need to request from your GI dr or primary

    1. Hi CommunityMemberd1d2a8 , thanks for chiming in here. It's important to remember that everyone who has Crohn's or UC tolerates foods differently. What one person can tolerate eating could be completely different than another person. I'm so glad to hear you've received remission, that's great! What medication helped you? Warmly, Pam (team member)

  3. not trying to be sarcastic, but isn't what you have stated, obvious?

    1. So I have now been referred back to the consultant which I’m waiting for an appointment. Last week I thought it was getting better I had 2 really good days but then today I’m having a bad day. My job is cleaning I’m seem to be better on my days off when I’m not doing anything which is weird ?

      Getting the nouring feeling in my upper tummy, pain under left rib, pain in my upper back and in between shoulder blades… the list goes on. I’ve been taking Omeprazole for 2 weeks shouldn’t that be helping by now ??

      In terms of my diet I’ve really been trying to eat well. Avoiding acidic and spicy foods. Mainly been eating fish and sweet potatoes for dinner. I swapped out normal milk for almond milk. I’m really trying with the food.

      The lower left abdominal pain I only seem to get at night… and during the day its the upper pain could this be gastritis flaring up I have been diagnosed with this last time I had the endoscopy. The pain in my back is worse this time ….

      Any help or advise would be great

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