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How fast can UC spread?

Posted , 7 users are following.

brooke22
brooke22

I've had my symptoms for around 5 and a half months and had a flex sig in December saying that I just had proctitis. Can it spread quickly? I'm so worried, could it spread to total UC within 2-3 months?

Please get back ASAP x

0 likes, 9 replies

9 Replies

  • kittd
    kittd brooke22

    Posted

    Hi, I've had proctitis for 7 years. Initially I was diagnosed after having a flex sig but now have surveillance colonoscopies to check and it's not spread. Have you had a follow up appt after your flex sig and are you on any medication? Do you have an IBD nurse you could speak to? Sounds like you need to speak to someone from the ibd team who can give you more information to reassure you. Everyone is different and medication might help one person's symptoms but might not help another person.

    This site is really as it's good to know you're not alone and others can give helpful advice especially if you're feeling fed up!

    I hope this helps a bit.

    Kit

  • brooke22
    brooke22

    Posted

    I have had a follow up, the doctor said I have mild ulcerative colitis located in the rectum and he has put me on oral meds of mesalazine and also enemas. I called my IBD nurse two days ago and she still hasn't returned my call which angers me. I will have to speak to a specialist. Thank you for replying x
  • kittd
    kittd brooke22

    Posted

    Hi, it's very difficult to get to speak to my ibd nurse too as she's very busy in clinics, endoscopy etc and it's not possible to leave a message on her answerphone. However, she has an email address and always rings when I send an email. Perhaps you can find out if your ibs nurse has an email? If it's not on your hospital website you could ring your Consultant's secretary. Also you could speak to the secretary who could leave a message for your Consultant?

    I have proctitis (in the rectum) and was on mesalazine initially which worked great for several years and I didn't have any flare ups. I was reviewed every 6 months but told I could ring and get an earlier appt if I had any problems. When is your next appt?

    Hope you get to speak to someone from ibd team and I know what you mean about it being frustrating. Make sure you have all your questions written down, I've often had a few questions but forgotten some of them on the phone!

    Good luck x

     

    • brooke22
      brooke22 kittd

      Posted

      My next appointment is on the 17th of March to check how my meds are doing. I can't help but worry about it all as if I read something on the internet I can develop a symptom by just thinking about it. I don't know what to do about anything
  • chris91672
    chris91672 brooke22

    Posted

    Hi Brooke,

    Personally I had little or no spread in 12 - 13 years. It stayed in the left side all that time. UC doesn't always spread, and can stay in one place for many years.

    Chris Warr.

    • brooke22
      brooke22 chris91672

      Posted

      Can it depend on how serious your case is? Mine doesn't make me go to the toilet any more frequently than before I had this problem and I have been on my meds for two weeks and I have no blood in my stools, surely my case is very mild?
  • kerry_63543
    kerry_63543 brooke22

    Posted

    Hi, everyone seems to be different. I was diagnosed 4 years ago with just proctotis. Last had a siggy November and has spread to 2nd junction of large so pretty much most!! I've not really ever been in any sort of remission. And really struggled getting to see correct Drs ect!! Now fingers cross.. I'm under correct team and going forward with a treatment plan! Xxx
  • filbyvic
    filbyvic brooke22

    Posted

    Hi i was diagnosed with proctitis to 20cm 3 years ago. At the time I asked about possibility of spread and was reassured by the consultant that only about 1 in 20 spread. A scope last year shoŵed inflammation to 10cm and a small patch of inflammation in transverse colon. Today My scope showed colitis in 2/3rds of my colon so has spread that much in a year. Think I'm just one of the unlucky ones sad. 

    Hopefully yours will stay as proctitis x

    • sheila91262
      sheila91262 filbyvic

      Posted

      Hi, It seems that the spread and response to different drugs is hugely variable. My son was indeterminate for months and had severe symptoms which lead to perforation and surgery. Wish we had gone to specialist hosp earlier rather than general as outcome may have been different. St Marks London or John radcliffe Oxford are the experts. GP will refer. Hope this helps. Also beware IBD sufferers are more succeptable to DVTs.

       

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