I’ll try keep it short as possible, symptoms started August 2018 with memory/balance issues and pale stools with undigested food as months went on things progressed and started bleeding February 2019, brain fog increased and abdominal and back pain also increased along with joint pain all over. during this time I’ve lost weight but managed to bump it back up .. I’ve had sigmoidoscopy (clear) colonoscopy (clear) endoscopy (clear) calprotectin was also normal.. with only inflammation marker I have is raised ferritin. Fast forward to now I feel like death, dizziness, can’t focus, pain 24/7, between 5 - 10 bowel movements a day, not very formed and pale / floating with red blood. Also stools burn quite a lot of the time too, haven’t had a brown stool for so long. I feel weak if I don’t eat very frequently .. constant headaches. My gp has now put urgent referral to Gastro and urgent referral for ultrasound on my right side that’s where most pain is and if you look head on at me my right side is sticking out slightly (abdominal abscess?) gp also said about it being crohns in illiuem? And apparently scope didnt go that far. So hoping not too long from now I’ll be able to get started with treatment as I feel dreadful and struggle daily with pain and constant fatigue. Gallbladder been checked as well as pancreas and liver. All good. I guess the next test from gastro would be small bowel MRI or pill cam ? Sorry for such long post but just wondered if anyone else could relate before their diagnosis ? Cheers a
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ktan49
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I was in your situation for a very long time. I have severe Crohn's and they can only normally see how bad my disease is with a capsule endoscopy. There are two types of pill cam's. One is for the large bowel and one is for the small bowel. I found it a relief once I knew what I was dealing with. I hope you get some answers soon. I did have a lot of the same symptoms as you and every test took along time. I hope you feel better soon.
Thank you for taking the time to reply to me, it’s a relief to see someone else who has gone through this hellish time.. I also stopped smoking Monday after starting again for 3 months (stopped the bleeding ) now I’m bleeding every bowel movement with urgency and lots and lots of mucus 😭 I can’t win! Hopefully gastro will do a pill cam when I see them then seeing as I’ve had every other test done that’s normal ! Fed up of being dizzy and not with it ... extreme brain fog is hard to live with. I’m used the the pain now just want my mental capacity back! It’s even messing with my vision, sensitive to light and eye floaters .Thanks again
Glad I could help in a small way. I know it's good to hear that your not alone and other people are going through the same situation and same symptoms. It can be along journey but i hope you get to see the gastro team soon. It's awful when you feel so unwell and you don't know what's going on.
I am not at all surprised you are feeling so unwell. I really hope you get further testing done very soon.
It is as we all know a very difficult time for hospital appointments but please if this bleeding gets to be worse or constant, as in not only when passing a stool do call 111 as you may need urgent attention.
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