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Research.

Posted , 7 users are following.

bob1234
bob1234

When I first got colitis I googled it. And read Wikipedia and NHS sites.

The other day while discussing my lastest pain with my GP she said I had become quite knowledgeable about my insides.

Before I got colitis I didnt understand medical stuff. Of necessity I now understand.

I am dying for a meal of cod and chips. Dřool.

Bob

0 likes, 12 replies

12 Replies

  • louise01749
    louise01749 bob1234

    Posted

    Hi Bob, when I battled UC 35 years ago, internet had not been invented and as patient's we were totally reliant on info from our Doctor's. My first Specialist, after seeing me for 18 month's told my parents I was a hypochondriac trying to get out of school! Collapsing 2 month's later I was diagnosed with advanced UC, 4 years later they removed my large bowel. Now my eldest daughter has suspected Crohn's and I am spending hours and hours researching info world wide. It is amazing how much you can learn that even the Specialist's aren't aware of. Researching probiotics which seem to me to be on the right track as far as understanding Crohn's. Thank goodness for Google!
    • pca
      pca louise01749

      Posted

      If you are interested in probiotics as an aid to helping with the symptoms of UC, google 'Symprove' and see what you make of it.

      Good luck!!

      Peter

       

    • Maryjo
      Maryjo louise01749

      Posted

      Hi Luise...yes the Internet is great and as I was diagnosed 26 yrs ago when there was very little known about uc by gps or rural hospitals.  I did mega amount of research too but I had to have my proctocolectomy 5 weeks ago..developed stricture in colon plus my colon was in ruins 😞 I feel so much better now with my stoma bag. Still getting used to it as still sampling different bags. Trying to get one that suits me. They all have their different pros and cons ...think I've got it narrowed down to couple at present but still have another few to sample so could change my mind lol 

      Re the probiotics VSL#3 always got the best write up when I spent endless time searching them. They r quite expensive but seem to get good results. Funny or not so funny actually my eldest daughter got diagnosed with Crohns too...was just thinking mayb I had that conversation with u. I tend to forget who I tell what to. Would need a notebook to keep record of this lol. Think she may also hav ibs which doesn't help either. And as well she suffers from panic attacks...however I sometimes think people who have gastrointestinal stuff tend to suffer more from anxiety panic type attacks !  Also I suppose specialist can't keep up with everything as there is so many other illnesses in the whole intestinal field ! And there is so much research going on out there. I second thank goodness for Doc Google lol ! ☺️

    • louise01749
      louise01749 pca

      Posted

      Hi Peter, followed your suggestion and Googled Symprove. It sounds like they have a winning formula. I wonder why there are no other similar products on the market? It always makes me suspicious when a new product comes on the market amid much hype and then costs an exhorbitant amount. Taking advantage of sick and desperately ill people . I would so love if some wealthy philanthropist would come up with a cure for one these insidious diseases and offer the cure free of charge. Have been reading about MAP bacteria and it's suspected role in Crohn's. The drug companies are so terrified of researchers finding cures and destroying the insane profits these companies are making at the expense of desperately ill patients.  Hopefully some other companies will jump on the Symprove bandwagon and produce a product just as effective but much more affordable!
  • alison23639
    alison23639 bob1234

    Posted

    Eat the cod and chips! Colitis is rotten, but sometimes you have got to eat fish and chips at the seaside and even though you know it will be tricky later on, they just taste so good! It would be very depressing if we restricted ourselves from the good things in life becasue we have a miserable disease. Cod and chips cheer me up, I am not saying everyday, but come on whats life without a few risks! Make sure you are need to a bathroom later on,  but enjoy it I say!
  • Maryjo
    Maryjo bob1234

    Posted

    Hi Bob.... Back from my few days away but would been better staying at home lol Beds were like rocks and both my husband and myself got little sleep due to it! Funny fish and chips Prob would have agreed with me and it is always awful when u really take yearning for something but can't have it . Hope u r feeling well at present 😊MJ
    • bob1234
      bob1234 Maryjo

      Posted

      Actually I think cod and chips should be ok and not cause a problem.

      Trouble is I can't drive due to meds and the best chip shoppe is 2 miles.

    • pca
      pca bob1234

      Posted

      What a nuisance!  Have you a kindly neighbour/friend who would be prepared to collect a portion for you?  Bribery might help, so you may have to offer him/her a portion too!! 

       

    • Maryjo
      Maryjo bob1234

      Posted

      Oh dear that poses a problem. 😔 Do they not do a delivery service or some kind neighbour or relative to get it for u as it's not too far away ! MJ
    • bob1234
      bob1234 Maryjo

      Posted

      No delivery service for fish and chips in Bournemouth. Everything else though like chicken curry and pizzas. Not very nice.

      I shall get a mate to pick some up.

      The web is a god send because I am not more intelligent but know a hell of a more about all sorts of things. From how an electronic circuit works to how my insides work. I surf and read what catches my eye.

      Bob

    • Maryjo
      Maryjo bob1234

      Posted

      Well at least u can get someone to pick one up for u.  Yeah don't n how we managed years ago without it lol . Don't think there's anything u can't find ! How's ur symptoms at mo ? 😊 MJ
  • johnc7524
    johnc7524 bob1234

    Posted

    Hi Bob, im like you since finding out i end up looking into this UC thingy and trying to understand how i can control it and not let it control me as I run my business and it has had a massive impact on it but i will find a way. i have found this group to be really helpful even when i ended up with a temperature of 41.6 2 sundays ago caused by kidney and bowel infection.

    anyway keep up the good work

    John

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