Newly diagnosed with crohns

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Ive just been told ive had crohn for 2yrs untreated. Doc thought it was IBS . Im

lactose intolerant also. My crohns seems different to everyone im

reading ... I have severe constipation. 10 ..to 14 days without help.

Ill get back on this soon my tablets about to did soz ...but need help and advice

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20 Replies

  • Posted

    You need to go and see specialist, gastroenterologist for may be your intestine have blockage caused by thickening the lining of your intestine and therefore it blocked the stools. I amazed that you suffer too long for your constipation. Drinlk plenty water and eat more fibre. Hope it helps
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    • Posted

      Thanks for your help. I have seen gastroenterologrist and had colonoscopy and endoscopy plus 4 biopsies from both a few weeks ago. Awaiting results. I drink a lot of water and my appetite is very poor, loss 6 stone with either not eating or vomiting what I eat. . I'm diabetic and epilepsy.

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  • Posted

    I cannot get over the time it is taking to diagnose crohns suffers, it just is not acceptable.I am firmly convinced that IBS is just somthing that they come up with when they are not sure what it is.  As I have said many times on these forums I have had crohns now for 52yrs and when I was diagnosed back then there was not so much known about this complaint yet it did not take so long to diagnose me.

    ​It was suspected that I was suffering for appenicitis and was admitted into hospital to have my appendicts renmoved, it was during this operation that they discovered that I also had Crohns. So I suppose one way of detecting this for sure is exploritry surgery, not something that you would relish but at least you would get a diagnosis.

    ​And with keyhole surgery this would not be so invasive. i sincerley hope that you soon get sorted ou soont and start receiving a suitable treatment

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    • Posted

      I've had a colonscopy and GI endoscopy awaiting results but the constipation is a problem. Doc given me tablets but once a week I'm laid up for a couple of days once I've took the tablets. Not a life. The doc said ileum is terminal ??? Help

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    • Posted

      How did they find it when getting appendix removed? I got my appendix removed but they didn't even look, I had stool in my appendix but they never said anything to me about taking a biopsy of the stool either.

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  • Posted

    Dear Gayle,

    Don't be scared about Dr saying your illeum is "terminal". What he/she should have made clear is that the disease is present in your terminal illeum, which is the part of the illeum which connects parts of the bowel.

    The terminal illeum is difficult to reach by the camera up the bum, and the most likely part that gets all scarred inside, and then blocks causing constipation, pain and vomiting and loss appetite and bloating.

    This is called a stricture and may need to be removed. Strictures can been seen on MRI scans.

    I had a diagnosis of crohns following appendicitis, then had my stricture removed. Now almost back to normal, best advice is low residue diet, water ++, avoid stress and sleep as much as you can. Good luck xxxx

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  • Posted

    irst of all let me say that I am sorry to hear that you have been diagnosed with crohns

    ​but even more and angry to hear how long it has taken for it to be diagnosed.

    I think that IBS is used when they do not know what it is, It is not good enough.

    ​One of the things that crohns can cause is a narrowing of the gut which is what can lead to constipation.I hope you can soon be fully diagnosed so that you can be put on the appropriate medication.

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  • Posted

    I don't mean to be hasty but I get really frustrated with doctors who tell people they have IBS like as if it were actually a real diagnosis. IBS is just a cluster of symptoms of what you are going through, there is always a reason behind the IBS and its doctors job to figure out what is causing the IBS. Doctors can get overwhelmed with having too many patients and try to send people home unless they have proof of a diagnosis right then and there. I too go through a week to two weeks without a bowel movement, I had a colonoscopy a endoscopy a Ct scan and they only found proctitis. Yet I'm in so so so much pain apparently without a cause.

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  • Posted

    Hi Gayle, I'm lactose intolerant too. I used to get constipated. I found drinking fybogel and having a conference pair in the evening after dinner helped me go at least 1 a day. I had very narrow terminal ileum, I've recently has surgery and constipation is no longer an issue, quite the opposite. Are you on merthotrexate, that use to cause me severe fatigue, shivers and sickness, for few days in the week. Once the side effects were clear they took me off it very quickly.

    Good luck getting the right help. Keep pestering the doctors.

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    • Posted

      Hi no I'm not on methatrexate. I'll try the pear and see if that helps. What surgery have you had of in not being to noisy.

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    • Posted

      I had small bowel resection of the terminal ileum and a resection at the sigmoid. The loss Of The terminal ileum is the reason I have to take colestyramine to prevent diarrheoa as I have bile malabsorption. One problem replace with another. However the surgery has meant I'm no longer in excruciating pain and am able to eat.

      What is the medication that is making you feel sick.

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    • Posted

      I suffered with constipation for years. But once I was off all meds waiting for surgery it was constant diarrhoea. After the surgery, I didn't actually eat for about four days, after which eating improved slowly and the more I ate the more I needed the lol so they figured it was bile malabsorption and put me on cholestyramine.

      If you are suffering slot try a glycerine suppository. It really works.

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    • Posted

      Considering the state I was in I definitely needed it. I have recovered well. It can take 2-3 months. But I'm so much better it has been worth it. Just need to be out on something for maintenance.

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