I’m currently going through the diagnosis process can I have some advice?

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Hi, I have been having stomach symptoms for 3 years now and doctors have suspected  that it could be Crohns. However some have just said it’s IBS.

My symptoms include every few months I get this very intense stomach pain that feels like a deep burning pain in the center of my abdomen that eventually moves to the lower right side. The severity of the pain lasts a few days but it leaves me feeling extremely ill for at least a month after. With the pain I get diarrhoea or undigested food in my stools, and occasional blood and mucus. After these symptoms disappear I feel near enough fine except constant nausea.

Other symptoms include

-Extreme fatigue 

-Pain all over body

-Severe Nausea 

-Feeling week and shaky

Over the years I have had tests my bloods have shown I am anemic. My faecal Calprotectin has shown that I have high levels of inflammation even when I don’t have symptoms but the colonoscopy and MRI of the small bowel have come back negative. However I had a CT scan and it showed slight thickening in the Cecum and a slight build up of faeces. Appart from that nothing else has shown up and I am really confused as to what is going on. The doctor suggested that it could be a mild case of crohns but I have to wait to see a Gastroenterologist but because most of the tests have come back negative they seem to not be bothered. Does this sound like crohns and what should I do? 

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12 Replies

  • Posted

    I had a similar experience before I was diagnosed to a point my Gp told me if he was a gambling man he would put money on all I had was ibs .. I became so unwell was rushed into hospital had an escemic bowel was in and out of consciousness for three days .. was taken to theatre after which I was told I had chrons/colitis as it was in both large and small bowel they rekon I'd had it years .. so good luck your symptoms all sound very similar thou I used to lose a lot of blood and get chronic diahria  

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    • Posted

      No all the tests in the end were positive so my Gp had egg in his face .. I really hope they get you sorted sooner rather than later am lucky it's now controlled with medication daily I've had several flare ups and developed other auto immune illnesses but count my blessings as I've never needed surgery xx 

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  • Posted

    Hi Charlotte

    I am sorry you are having a miserable time at the moment . I have had Crohns disease for 50 years and have to tell you that most of the symptoms you have illuminated in your letter I have suffered from. I feel that the big one is the severe nausea which I suffered from for years, until I discovered that I was overly aware of smells. You know when you smell something and you could retch right away. Years ago it was suggested that I take a sachet of Questran daily before I ate. It's real name is Cholestyramine and although I hate and loath fish because it tends to go through you too quickly is made from something fishy. These days it is easy to take because it tastes almost of orange, use to taste dreadful but was worth taking because it stopped the nausea and butterflies in the stomach. Now it is called Cholestyramine Light and its other use is to stop Cholestestoral getting too high. With me it worked very well and I would hate to live my life without it. Because Crohns means that your system re allergies is under pressure and does not work well, so you develop all sorts of infections which sometimes lay dormant for years. Most people with Crohns develop anaemia and a lot of us have B12 injections every 3 months, which sometimes has to come back to every two months when  you have had it for some time. You are open to having severe lack of zinc, sometimes potassium, because of the constant trips to the loo and losing blood in your stools. I do not want to scare you but Crohns is a nasty complaint, and although the symptoms seem like IBS which is what Drs will settle for, until they get some real proof. A gastro-enterologist will perform a blood test which will say once and for all if it is Crohns. Unfortunately, it takes some time to get the correct diagnosis and sometimes you begin to wonder if you will ever feel well again. But take heart, I went down with this when I was 21 and I am now 73 so really I am doing well and so will you in time. But I found the answer was to be more proactive with my own complaint and gain as much information as I could. You need a Dr or Gastro Entermologist that you trust and if you need to find the name of a good one, fine your local      National Assoc of Crohns and Colitis and they will point you in the right direction. I wish you well and if you have any more questions or queries, please get back in touch.

    Best wishes

    Sheila

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    • Posted

      Hi Sheila, thankyou so much for your reply. It’s definitely a tough situation to go through. Where can I get Cholestyramine? I might give it a try to see if it helps with the constant nausea. Also may I ask what tests you had done to get diagnosed? Also did any of your tests get repeated and were some negative? I have had some tests and some are negative and some are positive. It’s all so confusing. I do need a good Gastroenterologist who will help and not just say it’s ‘ibs’ before getting all the facts together. 
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  • Posted

    Hi Charlotte

    I get the sachets from my Doctor's surgery. It's called Questran Light and is cholostyramine which has been around for years, but as I say has got popular because it also helps adjust and lower cholestrol. I had all the tests done, but in the past you had to have a sigmoidostomy where they put a tube with a camera up your rear end, and if it didn't show in that area you had the other one done which was done the throat. These days its a smaller tube and much easier to go through. To help you I can explain that I think the sickness comes from the biliary duct being blocked with mucous and constant infections I also tend to get a lot of urinary tract infections. The infections are typical of Crohn's and even at my age, when I go off colour it is an infection and I suppose these days I recognise it completely and quickly. Crohns can affect the digestive tract from throat through to bottom. I have had three re-sections of the bowel done as well as a gall bladder removed, although there was only gravel and not stones. It is the pain that lowers you and I remember planning with friends to go out in the evening, slightly later as we all did then, but by the time it came to get ready, whether nerves or the illness I just wanted to curl up on the floor or in bed. I also lost an extreme amount of weight and at my worst weighed in at 6 stone. My surgeon then had been to the USA and came back with handwritten notes about what to do when operating on Crohn's, this was lucky and marked my way forward and I was 23. The treatment then was high dosages of steroids which I took for about 15 years and of course suffer from now because of my bones and arthritis. As I said, it is important to get advice of the best gastro e. person where you live. The National Association of Crohns and Colitis is a good knowledge base. My gastro man has now retired because he is the same age as me, but I was lucky to have met him. He still does help if I get unusual symptons, but these days he is more of a friend than my Doctor. I think he got as much out of me getting better than I did, although I trusted him completely and this is what you have to find. Blood tests can show so much and as lot of sufferers of Crohns will tell you the test you have to look for to get done.  Anyway, if you need any other information, let me know.  Good luck Sheila

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  • Posted

    Hi did you get a response? I have elevated calprotectin and anaemia, severe right sided lower pain. Quack says it’s ibs 
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    • Posted

      Hi, I haven’t as yet as I’m in the UK and appointments take a very long time so I have to wait till June to see a consultant. But my doctor says that having a elevated Calprotectin is a very good indication of Crohns. You sound exactly like me as my pain goes into the right side. Have you had any tests done? 
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    • Posted

      Same as me. My doctor said that Crohns is the hardest disease to diagnose because it can show as negative on tests for years and then all of a sudden start showing. You know your body I would keep pushing for tests. It does sound like you have Crohn’s. X
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