Colitis/chrons

Not been on here for a while moved from my lovely Victorian house to a flat as my condition has become worse.I have fibromialgia/me/ostioathritus/..I was also admitted to hospital last Nov with server inflammation of large bowl and small intestines.. I was vomiting blood had server cramping pain and sweating profusely.

I was feeling ill from last Aug when the pain and sweating became so bad I went to see my doctor,I was not vomiting at that time.each time I saw a doctor about this they told me it was the change as I was 53 and had been diagnosed as going threw the menopause I believed them.I struggled on threw sep/Oct then in Nov I started to vomet back food as I could only stomach soup at this time this was now coming bk up.back to my doctors where I was told it was now a stomach bug! This went on till I started vomiting blood up I informed my gp of this I was by now in server pain vomiting sweating and had a high temp.unfortunately my gp refused admittion to hospital as he didn't believe me!!! Eventually I was admitted to hospital where after a emergency scan I was diagnosed with colitis..my white cell count was off the scale and my red cell count was very low.

Since being diagnosed I have undergone several tests cameras down in to the stomach where I was also told I had H pylori with the camera in to the back passage showed no signs of colitis!!! I still have flare ups of runny stools and bad cramps my consultant as just put me on a course of painkillers for the cramps and opmrezole for back wash of stomach acid and buscopan for cramping.I'm now left to manage this condition as well as my current conditions, I would like to know if anyone on this site has colitis/chrones, and had server sweating asosiated with it. I do feel my GPs never diagnosis me with this problem and fobbed me off as it being the menopause.. I was in hospital for eight days..and I'm still trying to recover nearly 12 months later.

Birkie

10 Replies

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  • Birkie, I am sorry you've been so unwell and also neglected by doctors, it would seem. It sounds like a horror story.

    Have you had an up-to-date blood test for your thyroid hormones. I think that might be helpful to know the status of your gland.

    The blood test should be the earliest possible and fasting. You can drink water. If you take any medication for thyroid allow a 24 hours gap between it and test.

    Sometime we are diagnosed wrongly but they wont look elsewhere for the reason we're very unwell.

    Thyroid UK

    I'm sorry you've had another 12 months trying to recover whilst also moving house. Traumatic events when healthy never mind if unwell.

    While you're at it, ask for B12, Vit D, iron, feritin and folate to be checked.

  • Thanks for your quick reply shaw

    I am having blood work done again only because I have gone slightly deaf in one ear its like when you go on a plane and need to pop your ears only mine won't pop!I feel very dizzy and sick,Also my toung is very sore and I do have geographic toung the ENT specialist said it looked like i have a dificency but I cant remember what that was! My ENT specialist says my ear canal and tubes look OK he thinks my ear problem might be linked to my brain so waiting on a MRI scan.

    Birkie ☺

  • Sounds like LOW B12 ....

  • How scary for you Birkie. You must be worried. Make sure they test your B12 level and make sure its at the top of the range. The ranges of the NHS are lower than the ones now informing us that we should have a optimum of around 1,000. They'll probably tell us that is too high.

    It's amazing that when we have an autoimmune condition that everythng isn't automatically tested. Also if you've not had Vit D, iron, ferritin and folate done too if you've not had them.

  • I was diagnosed with Crohns over 43 years ago and Hashimotos in 2005. I am in good health at last after learning so much from others who know more than me on this forum and from good books and websites.

    Are they treating the H Pylori ? Have you been tested for PA - Pernicious Anaemia which would result in a very low B12 result too. I would also have your VitD tested - as it is a steroidal pre-hormone and is anti-inflammatory - so good for guts !

    It is important to try and heal your gut and I would suggest going gluten free. Do you have Hashimotos ? Gluten is known to create inflammation in some people - leading to other problems.

    Colitis - as the * itis * suggests - is inflammation of the colon - so it is possible that on the scan you had some - but with the colonoscopy you didn't.

    If a runny tum is a problem - then drink small amounts of San Pellegrino mineral water. It contains Silica which mops up the fluids and allows more normal bowels movement. Do not drink too much as it will cause constipation. Also Inulin is suggested for Crohns and creates better/great bowel action :-) I have used both. I use Greens Organic Inulin - one teaspoon a day.

    Happy to answer questions :-)

  • Thanks for the quick reply Mars

    Firstly I would love to take anti inflammatory products but unfortunately I'm one of those misfortunet people who can't take them along with HRT,the contraceptive pill and asprin.I have just had a stool sample done which came back normal whatever that means! When I was in hospital they tried me on several different types of antibiotics but I was very sick on them and the consultant felt it best to take me off them,they were intrevinous antibiotics,, on returning home I had liquid antibiotics and again I was very ill so my doctor took me off them.my Castro consultant prescribed me opmrezole for reflux,buscopan for cramping and a painkiller for bowl pain its not made much difference I have runny stools not all the time I do try to keep to a diet for my bowls but believe it or not salad is the worst culprit..😕 I have just had a radioactive pill test to see if I am absorbing nutrients,I think i have reactive colitis as my flare ups can be triggerd by what I eat.I have noted the things you recommend and will be trying them its so embarassing when your out and need to run to the loo with some urgency😢

    Birkie

  • Have you been tested for PA ? May be worth looking st their list of Signs and Symptoms on the PAS website ... Have you had your VitD tested ?

  • My Dad has Crohns and had an op for a bowel blockage. he wasn't given any dietary advice after the op and after 2 months of "sitting on the toilet" I persuaded him to go Gluten and lacto free. I also make sure his levels of Vit D, B12 , iron etc are optimal and he is a lot better now.

    Any gut disease that affects absorption of Vits and minerals should be closely monitored but NHS aren't interested in how diet might be the way forward they just want ot stuff you full of drugs. Of course Crohns is an auto immune disease and I have inherited the hypothyroid gene from him and his family and as I also have Hashis. I am just hoping I don't develop Crohns. Do hope improved vits etc and a GF diet will help you.

  • Thanks for your reply Crimple

    Iv modified my diet I don't eat spicy food ect but some foods do send me running to the loo,,salad is one.I mostly eat bland food now I find rice pudding low fat,soup,tuna some cereals are OK .and yes your right about being pumped with drugs,iv just been left to get on with it and I have now been told the opmrezole can cause ostioathritis,, which I already have😢

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