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Crohn's or no Crohn's

Posted , 3 users are following.

Micky18109
Micky18109

Hi guys,

I'm a eighteen year old Crohn's disease patient. I've been diagnosed with cd for the past five years. I've just recently had a ileocolic resection (6 months ago) for my Crohn's disease. Recently I've been showing some symptoms such as sever diarrhea, bleeding, stomach cramps, palpitations and significant mouth ulcers. These symptoms from my judgment do point towards the direction of a relapse of Crohn's disease. However is it possible for me to have crohns again just 6 months after surgery? My gastro team are suggesting that I might have bile salt malabsorption which I'm currently being treated for with medication. Although I have been taking the medication for the past 4 months my symptoms are still on going. What should I do because my gastro team think that the symptoms are unrelated to crohns?

1 like, 6 replies

6 Replies

  • daniel666
    daniel666 Micky18109

    Posted

    Hi sabrina,

    I had my resection last March, 6 months later I had a colonoscopy and was told I was all clear although I have to take the powder for the bile salt malabsorbtion.

    A month later I started getting the cramping pains and was sent for an mri and was told it has come back in two places and am now waiting for second surgery.

    so don't leave it, it's more than possible it's come back if in fact they removed it entirely to start with.

    hope you get sorted soon

    • Micky18109
      Micky18109 daniel666

      Posted

      Hey Daniel,

      Thanks for the response, I didn't really realise that it could be so serious as they kept saying that there's no chance that I can have it so quickly especially because my blood work was okay, so they just kept pointing it out as bile salt malabsorption.

      I haven't had a colonoscopy yet but will probably be sorted out soon.

      Yeah I've been having really bad cramping but I thought it was the medication for the bile salt.

      I've got a follow up appointment next week so I hope il get a conclusion in that.

      Thanks anyway

    • daniel666
      daniel666 Micky18109

      Posted

      My bloods were okay but they tested a stool sample which gives a marker showing the inflammation.

      Normal is around 240 for a crowns patient,

      Although I was told I was clear my markers showed at 1105.

      If you've not had this test it may be a good idea to suggest it on your next visit

    • Micky18109
      Micky18109 daniel666

      Posted

      Yeah I've heard of that. My mums a nurse and she requested for one of those to be done for me. However I'm under peadiatrics and they don't do those tests there so now I'm waiting for my surgeon to contact me and il probably bring that up with him.

      Wow your inflammation markers are really high.

  • IndieHannah
    IndieHannah Micky18109

    Posted

    Hi Micky

    Yes, it is entirely possible that the Crohn's is back!!!  Surgery isn't a cure and you mentioning the mouth ulcers is indicative of active disease.  The diarrheoa could well be a result of the surgery....I have had three resections in the same area as you and am dependent on Questran to absorb the bile.  The draw back of this medication is that it can mask the Crohns.  The cramping you describe sounds like a narrowing in the bowel.  Could be active disease...could be scar tissue from the surgery...could be too much medication. 

    Its really important that you get it all checked out.....in over 20 years of Crohns I have never had a blood test that showed raised inflammatory markers...but the disease has been active more often than not!!

    Maybe you could discuss with your consultant going on a liquid diet for a while to give you and your bowel a rest....its tough but a far better solution than steroids at your age.  If you use a product called Modulen IBD it has a naturally occurring anti-inflammatory element and it tastes far better than the ready made cartons.....just a thought!

    Anyway, really hope you get things sorted....and remember...bowel surgery's a big thing and it's only been six months....it takes time to heal and for you to adjust to the physical change that has occurred.....you might not be able to see it, but you're missing a bit of you!!!

    Take Care

    • Micky18109
      Micky18109 IndieHannah

      Posted

      Hey

      I appreciate the respond from you.

      I have already tried out Modulen (twice) did not have much of an effect. I also tried out ensure plus this didn't work either. They made me try them to relive my symptoms which did not successes, this then led to the surgery.

      Yeah I understand that it could be scar tissue, medication or crohns. However I don't think it can be the medication a I have been taking that for around 4 months. I do think that it might either be the scar tissue or te crohns.

      That's amazing that you've had 3 surgeries. I couldn't go through one let alone 3.

      Yeah my gastro team just keep saying that my blood tesr results are fine even though my inflammatory markers are high and my iron level is low. But most of the time it's alright howeve I still show crohns symptoms.

      Yeah it's true that I'm missing a part if my body. I'm probably still trying to get used to it.

      I hope my gastro team come out with a good conclusion

      Thanks again with your comment, it has helped me a lot.

      Hope your okay and good luck for the future

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