Crohns colitis

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Hi all, I thought I wld join this group as i haven't got a diagnosis yet but have an idea its crohns colitis. My heads all over the place at the moment and feeling very emotional. Had my Colonoscopy and biopsies done. The endoscopist said something about crohns colitis then said we taken biopsies to see wat it is. I was awake during Colonoscopy but that part is abit of a blur. I thought it was a form of colitis but that only effects the Colon and I hve inflammation and erythmia at the mouth of the terminal ile and ileocacal valve which is common in crohns disease. It all came on all of a sudden. Bloody diarrhea 20 times a day. She's put ??colitis. I just want to be prepared. Has anyone got this and is it a severe form of crohns,?

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  • Posted

    Hi Kelly,

    I don't have Crohn's colitis but I do have Crohns that affects my proximal, mid and distal small intestine. The area around my ileo-caecal valve is the most affected and at the time of diagnosis I had some stricturing and extensive ulceration.

    I was diagnosed last May and completely understand how emotional you must feel. It is exhausting being ill in this way, particularly before you have a diagnosis as you can't be given any treatment and the symptoms are very difficult to live with. I also found the uncertainty about what was causing my symptoms quite difficult to cope with.

    Hopefully someone who has Crohns colitis will respond soon and be able to give you more information on this type of IBD. I just really wanted to respond to let you know that although you feel incredibly ill and emotional right now it will not always be like this. Things will improve once you have your diagnosis and can get treatment.

    I was so sick last year and became desperate to get a diagnosis as it was very difficult to cope with all of my symptoms. I was in tears most days and remember clearly last Easter having to go back to bed most days because of the exhaustion and because sleeping was the only way to get rid of my pain - it really was horrendous. .... Now, less than a year since my diagnosis I do not feel like a sick person at all.

    Hang in there and keep reminding yourself that things will get better.

    Btw. My mum has Crohns ( she was diagnosed around 15 - 20yrs ago - I have lost track of which year it was). It is the large intestine that was affected with her but she can't give me any details as it was so long ago and she doesn't remember much about her diagnosis ( I don't think she asked very many questions). She is not on any medication now and hasn't been for years. She holds down a full time job and at 63 has more energy than me ( always at the gym and dancing)!

    You can and will feel better xxxx

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    • Posted

      Hi Sarah, thanks for your reply. I'm sorry to hear wat you have been through and so glad your much better now. I don't feel sick at all. I have no symptoms apart from wen it came on suddenly on boxing day which lasted a week. Even then I wasn't in pain. It was bloody diarrhea with stomach cramps. I thought it was something I had eaten. I had no symptoms before that. Just worried as to wats to come. I'm also dealing with loads of other stuff. I have a huge family and no1 suffers with crone's. Its comforting to know about your mum. Knowing that it can maybe. Get better. I hope you carry on feeling better. Xx

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    • Posted

      Hi Kelly,

      Great to hear that you don't have any other symptoms and that you feel well. You mentioned that you have inflammation and erythema ( redness) but not ulceration etc. which hopefully suggests that your disease may be in its early stages.

      My 18 yr old daughter is currently undergoing tests for Crohns as she has been experiencing symptoms similar to those I had around 8 yrs ago ( which I now know were early symptoms of my disease). She is well most of the time but then the symptoms will flare and she'll have a few bad days then go back to being well for 2-3 weeks. Although, like you, she feels well most of the time my feeling is that if we can get an early diagnosis she doesn't need to ever get to the point that I was at last year.

      There are many treatment options available. Try not to worry too much as it is highly likely that your symptoms can be controlled and prevented from getting worse.

      You're probably aware but stress can contribute to a flare so try to be kind to yourself and make time to rest.

      My mum, myself and my aunt have all been very sick with symptoms in the past but all of us are well and active now. My experience with Crohns means that it no longer scares me - I know that it is possible to be well.

      I belong to a few Crohns groups online and also attend patient education meetings ( Crohns & colitis website has details). These have helped me a lot as I think that only someone who has experienced the symptoms can truly understand what you are going through.

      The biggest factor in my healing has been the SCD way of eating. This isn't yet recommended in the UK but is by many consultants in the US. Research is now also emerging to support it ( Washington university & Seattle hospital). My thought was that it wouldn't do me any harm to try it ( my consultant also said this).

      Try to stay positive. xxxx

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    • Posted

      Sorry to hear about your daughter. Must be hard at such a young age to have this. I'm 42 and cant imagine dealing with it in my teens but I suppose she knows a lot about it and has loads of support. I don't have any family member with it. Now thinking about it I could have lleocolitis. I've done loads of research about it. Want to be prepared with loads of questions for my Dr ha ha. And so I know wat to look out for. Yes its good to talk to people who understands it. My Dr first thought I had acute colitis. I thought I had colitis on its own and didn't realise it meant inflammation. I knew nothing about this horrible disease and the only reason I saw my Dr was due to the blood otherwise I wouldn't of gone. I only had symptoms lasting a week, had no pain only cramps like severe period cramps. She couldn't visualise the terminal lleum and hoping its not due to inflammation. Tbh apart from cancer this was my second worse fear. I feel positive about it now but tomorrow mite be different. I appreciate all your help xx

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    • Posted

      Also I haven't had any flare ups since boxing day. That's the only symptoms I've had and Nothing since. Hopefully your daughter has a mild form of it.

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    • Posted

      You are doing absolutely the right thing by educating yourself and preparing questions.

      I remember asking my consultant if he could tell me if he considered my Crohns to be mild, moderate or severe. Somehow this helped me to get my head around it and understand where I was at with the disease.

      I suppose for me, knowing that my mum and aunt have been well for so long really does help me to have a positive outlook (they still have check ups with the IBD nurse every 6 months but there are never any issues).

      Try not to panic. Take care xxxxx

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    • Posted

      sarah76940  Hi. I had a trip to the ER and was told I had an attack of colitis. It said "Consider infection/inflammation." My GI thinks I have had IBS for years and now had infectious colitis on top of it. The only WBC count raised was a very slight rise in Neutrophils. I did manage to find one scientific study that said something about IBS with colitis...Neutrophil ..blah blah, suggesting not full blown Crohn;s, and I saw something else that there CAN be immune mediated IBS.  Go figure. 

      Anyway, on the Crohn's page here we see so many of the worst sufferers and I am not trying to make light of that suffering in any way whatsoever. But your post is refreshing and hopeful to someone who is not entirely certain of her situation. My doc said Crohn's is a "slight possibility" but he doesn't think that's what is really going on. My colonoscopies have always come back perfect, but that doesn't necessarily mean anything. I'm going for a second opinion soon.

      What did you do to get yourself better again. I'm noticing SCD eating but what else happened? WHat do you think helped? Thank you and be well. 

       

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  • Posted

    sorry KELLY i wrote a lenghty note but the site or somethng devoured it hence this is what i wasn to say in short .. i was diagnosed with chrons last yr and i have a seriies of treatments . first ascolon . the steroid . prednisolone . oral and foam .. then afere some months of these tteatments i had another internal ecamination and the flaering ie inflamation had receded sufficently for me to be pur on mesalazine which is a long term anti inflamatory drug .   there are other types of meds like infusion . ie intra venious antifalmatory drugs which also work very well in most cases i have read about and experienced . on line .  the lont term anti inflamatory drug im currently on is called Salofalk  and is a from of mesalazine . it is working well and i also occasionlolly use some foam to control swelling .ie imflamation on the other end .  anyway thet is the story of my Chrons so far and good luck with your diagnosisn and treatment and rmemeber head up and dont be too down there is a treatment for you just keep up to attending your specialist care giver and keep brave ..  mike 
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    • Posted

      Thanks for your reply Mike, I don't have any symptoms all apart from in December. Its really odd as I'm not on any medication. Its just the site of the inflammation that indicates crohns but I suppose I just need to wait until week. It could of been worse. Thanks for your sharing mick and thanks for advice xx

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  • Posted

    You are not alone Kelly keep reading this forum.  One thing I did when I was at your stage was ask the consultant for a diagram show how much and the location of your intestine is inflamed 
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