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Not diagnosed yet but need some opinions...

Posted , 3 users are following.

SopsIsTops88
SopsIsTops88

Hi there,

I've only just joined this forum! I've been searching for a few answers on IBD and Crohn's disease and found this site. I was diagnosed with IBS when I was a teenager but didn't have any tests to confirm this at the time. Now I'm older my stomach and bowels are really affecting my health and I wanted to get your opinion if possible!

I have a few health issues already, but have been feeling really sick and tired and have quite severe IBS type symptoms for years. I recently had a Endoscopy and a Flexible Sigmoidoscopy which confirmed that I had a Hiatal Hernia which could be causing the sickness but doesn't really explain any of my other tummy problems. Along with this test I also had a Fecal Calprotectin test which came back as elevated. I also have been diagnosed with Aneamia and Vit D deficiancy. I am now booked in for a Colonoscopy.

My symptoms are pain and cramping in bowels, particularly on the bottom left of my tummy and top right, going to the toilet a lot! Can be 8x in one day (sorry if tmi!) pains when I've eaten, bloating, gas, urgency to go to the loo, sickness and nausea. I have times when the pain feels like it's my whole digestive system and then it'll ease off a bit then come back a few days later. Certain foods can make me rush to the loo immediately. I do get really bad skin but that could be accounted to my other illnesses. Because I've been living with these symptoms for years I'm not sure what's normal and what's not, so I feel a bit lost.

I know you're not doctors but would really love to hear your stories and what you may think. I feel like I'm stuck in limbo so any help would be greatly appreciated.

Thanks,

Sophie

0 likes, 11 replies

11 Replies

  • Jokuar
    Jokuar SopsIsTops88

    Posted

    hi Sophie

    I am awaiting definitive diagnoscis but told it looks like Crohns.

    It would be wrong to pre judge but your symptoms resonate with me but could be other than Crohns so  wait till you know.

    Colonoscopy plus  tissue samples should  give you a definitive named complaint which I haven't quite got yet.

    Good luck lovey it's tough but it helps if other folk care.

    regards

    Pete

     

  • nannylin
    nannylin SopsIsTops88

    Posted

    Hi Sophie I feel for you suffering for so long. I too had the IBS diagnosis for many years until about 15 years ago many tests confirmed Crohns. It's not a great thing to have but I did feel better mentally when I had a confirmed diagnosis at least I knew what I was dealing with. I am sure you will feel the same. At least you can start on some meds that can help. It's all trial and error what works for one won't for another be patient. There is a lot of help and advice on this site too. Hope you don't have Crohns but as I say knowing what you have is a start. X
  • SopsIsTops88
    SopsIsTops88

    Posted

    Thank you for your responses!

    It's comforting to know that other people are or have been in the same situation as me. It's the not knowing which is the most frustrating thing. In a way I hope that the further tests do show what the problem is and I can take it from there.

    I've not had any consultations since my previous tests or before my upcoming colonoscopy so I have no idea what to expect or what it could be! I just want answers!

    Pete - have you had many tests yet? How long has the whole process been?

    Nannylin - thank you, you sound like a really brave person and like you deal with it well. What treatments are available for Crohns sufferers?

    Thanks again!

    Sophie

    • nannylin
      nannylin SopsIsTops88

      Posted

      Hi Sophie I have had loads of meds from steroids (worked like a dream but not good side effects), immuno suppressants and a drug called Infliximab which had to be given through an IV. I ended up have part of my bowel removed as I had strictures(narrowing caused by scaring) and suffered a couple of bowel obstructions. That was 5 years ago and have been reasonably ok since but I know I have been very lucky. Some people have surgery and are ill again very soon after. Everyone is different and try not to get stressed out and dwell on the really bad stories a course of meds and the right diet may get you back to a good place. X
    • SopsIsTops88
      SopsIsTops88 nannylin

      Posted

      Hi again, thank you for telling me that information. I guess the thing I'm worried about is having more medication on top of what I already take. Although hopefully if I'm diagnosed it can all help to feeling better in the long run. Am I right in saying that the inflammation in my bowels would not be caused by ibs? My test is in just over 2 weeks so it's not too long until I find out I hope. Your help is really appreciated :o) x
    • nannylin
      nannylin SopsIsTops88

      Posted

      Hi not sure if IBS causes inflammation or not but when they do the colonoscopy they take biopsies and can tell from that. I didn't find the scope painful just a bit uncomfortable and didn't feel the books at all. You will have to take bowel prep the night before which cleans the bowel. Not a pleasant drink but be warned the result is fast and goes on for a while DO NOT go out or be far from the loo it's like someone has put a hosepipe inside you on full, it certainly cleans you out and can go on for a few hours. Not pleasant but best to know what to expect I think. You may also need some soothing cream for your bum cos all that movement can make it sore. Sorry TMI but as I say you know what's coming. Hopefully you will have an answer very soon.
    • SopsIsTops88
      SopsIsTops88 nannylin

      Posted

      Thank you! I had a consultation at the hospital and the nurse went through things like that too. I have warned my boyfriend that he won't be able to use the toilet for a good few hours the evening before and the in the morning! I can imagine it's going to make me very sore down there! I don't think it'll be as embaressing as having an enema in hospital before my sigmoidoscopy. I was sedated before but still felt in quite a lot of pain so I am a bit worried about that. X
    • Jokuar
      Jokuar SopsIsTops88

      Posted

      Hi Sophie

      It's been 3/4 weeks since colonoscopy when doc said he was fairly confident it was Crohn's. I've been on prednisone since then on a decreasing disease which has stabilised condition beyond all recognition to how i was during Feb/March.

      I still await definitive diagnosis as well a s result of multiple blood tests to establish how I might cope with immunosuppressive medications

      Latest news - I've discovered that I have never had Chicken Poox so must be immunized for that also prior to new meds.

      I hope to see specialist next week so may be some concrete info then.

      Incidentally your description of symptoms is strikingly similar to mine when in flare mode.

      Good luck lovey

      Pete

    • SopsIsTops88
      SopsIsTops88 Jokuar

      Posted

      Hi Pete,

      Did the doctor tell you straight after the colonoscopy that he suspected Crohns or did you have to have another consultation about it?

      Would you say since you've been on meds your condition has improved?

      It's weird but it is a comfort to know that you feel the same. I've had these symptoms for so many years it just seems normal to me but I realise it's not normal at all! I feel like my body isn't absorbing any nutrients at all as it's just coming straight back out. I think that's how I'm anaemic now and I keep having vitamin deficiancies although I eat a healthy diet. I can eat something then need the toilet straight way. It's starting to get me down so I hope I can get some answer soon too!

      I really appreciate your help!

      Sophie x

    • Jokuar
      Jokuar SopsIsTops88

      Posted

      yes. Gastroenterologist said directly after camera work that it looked like Crohn's but tissues samples etc would confirm this definitively (not happened yet as results were not available last time I saw him).

      Since being on Predisalone condition has stabilised completely and am eating as normal if there is such a thing.

      When in a flare situation I found fatty foods made it worse (dramatically) and so did fresh fruit or fruit juice. So avoided all fruits and milk etc. To be honest when in flare "mode" I lived off toast, herbal teas (especially mint) and bananas and I swear this helped me anyway.

      When in flare up also there was blood every time I "went". Colicky pain if I didn't eat for more than 3 hours or so and similar cramping pain after eating followed by need to use toilet within say an hour usually.

      Incidentally with me the prep for the colonoscopy was worse than the event itself as I was starving hungry. The procedure was uncomfortable and undignified but not painful.

      Hope that helps

      Pete

    • nannylin
      nannylin Jokuar

      Posted

      I agree fat is to be avoided at all times. I also found chicken, fish, white rice and white bread tolerable. I too find that I can't go much longer than 3 or 4 hours without eating due to pains (except at night) not sure if this is due to build up of stomach acids ? Again I agree the procedure was more embarrassing than painful and I could also see most of it on a screen (had no sedation) so it was interesting too (I know I'm weird !) hope when your diagnosis is confirmed you get the help you need and can reach a place where steroid use is minimal.
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