At my wits end.....pls help

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After 4 weeks of near pure blood diaorrea, 30- 40 times in 24 hours and eventually becoming enemic and dehydrated and so poorly my husband was admitted to hospital on boxing day. After an emergency endoscopy and results of other tests he was diagnosed with severe uc. The hospital has been brilliant geting him started on steroids and the other treatments the same day but apart from being re-hydrated there is no sign of the frequency of how often he goes and no slowing slowing of it being less bloody he is not improving. How long should it take for the drugs to start taking effect ????? He has of yesterday evening alsa contracted c-diff in the hospital which i imagine will make things worse as it is a diaorrea bug.

Also as of yesterday they gave him an x-ray (not ultrasound) and his consultant has said he must have one daily but i dont know why...perhaps someone can tell me. I spent last night researching uc as i thought it was just bad ibs but now i know it is totally not and stumbled upon this very good forum and website so im hoping you can help. Does anyone ever have the colon removed on a first attack of uc if it is very bad ????

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8 Replies

  • Posted

    It can take months for the drugs to work, the daily x-ray is probably to make sure the UC isnt causing perforation / s (so air, food and or food waste enter the abdomen and cause Peritonitis), its common to require some sort of colon surgery due to severe UC but hopefully your husband wont need it smile
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  • Posted

    Hi doctor spock, thanks for your reply.As of today he has been passed to the surgeons. I have found out that the x-rays are monitoring toxic megacolon and they are not happy with the results hence he is under their care. They have this evening drawn on his tummy and said that it is so they are ready to take him to theatre in an emergency although they are aparently not actually planning it ????? As all of this has happened over the holidays its been very hard to get some answers on websites so i do appreciare you replying. Reading your websites info and forum has helped me to understand this illness which i had no idea exsisted, as it is so traumatic i think there should be more public awareness of it. When i eventually get him home i will be doing all i can to help support and try to raise funds....I just need to get him better at the moment with or without the surgery. I will post his progress

    Thanks again

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  • Posted

    Gosh toxic megacolon :shock: I suppose its been caused by the C.diff,, jeez thats about as bad as it gets :? Yes please tell us how you get on sad
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  • Posted

    Hi, yesterday (saturday) his consultant sais his x-ray looked a bit better and his bloods were marginally better although i dont actually know what the problem with his bloods are....I'm battling to take in everything they say as im sure you can understand. They said hopefully the drugs are starting to work and he may avoid surgery if the colon dilating stops which i take dilating to mean swelling.

    His x-ray today is apparently not quite as good as yesterday but he seems alot brighter in himself. His diorreah is down to about 12 times in 24 hours although it still almost all blood, they tell me this is because he is having some kind of injection in the tummy to thin blood because he is at risk of blood clots ??????

    In case anyone understands the drugs he is on something intravenously that they will eventually give him oral when he's better, he has a potassium and sodium chloride drip running and takes 5 large flat disk type pills that are light browny colour. I've tried asking what all his drugs are but they dont seem to want to tell me.....maybe you fellow suffers can enlighten me by my description.Oh...forgot the antibiotics that also run through drip...i know there for the c-diff

    I had a very good nights sleep last night having come from the hospital thinking as the x-ray was better he was going to escape surgery.....today im back worried sick and in floods of tears again. I dont want him to have surgery but if it saves his life and makes him better i dont care, i'm still gonna love him with a bag or not. I just want him home. Gonna go now as im soaking the keyboard with tears and feel like im jibbering on

    xxxxxx

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  • Posted

    It sounds like the C.diff was caused by the antibiotics rather than from an aquired infection, the funny thing is the very same antibiotics should get on top of it given a little time smile

    In some (maybe older) people some antibiotics (even just one pill) can seriously alter the balance of good and not so good (but still quite safe) bacteria in the gut,, C.diff is the usual suspect, once the good bacteria are killed or far less its amount grows to a dangerous level and the colon becomes sick :?

    The problem with the bloods maybe a high / huge white blood cell count from fighting the infection, things like that, basically the bloods are saying 'yep Im still pretty sick' smile

    The tummy injection. When you are in hospital they like to give the patients a drug called Warfarin (a blood thinner) this is to help stop patients getting deep vein thrombosis (blood clots) from all the laying about smile

    I dunno about the brown pills it could be anything. If you look at the charts at the bottom of the bed there should be a big prescription sheet in the pile aswell, if its there that should list every medicine. Theyre keeping him hydrated with the salty drips, thats exactly what he needs smile

    Try not to worry hes bound to be going up and down like a yo-yo, aslong as the general trend is 'getting better' thats what matters :wink: Youll know when your husbands well on the mend when he asks for some credit for the TV / telephone (if the hospital has PatientLine that is) :wink: :lol:

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  • Posted

    Hi, hope your husband is doing better?

    Is this the 1st time your husband has had tummy problems? When he started bleeding was this the first time he had had blood in his stools? If it is, make sure that the hospital gets him set up under a IBD nurse specialist as it will make a big difference to his aftercare and future flare ups plus you'll get the correct useful info you'll need from them rather than just a general doc. i say this as i experienced several flare ups before I had access to my fantastic IBD nurse, and before i wasnt given the right info & care i needed. also the doctors said it was crohns and it was the IBD nurse who eventually correctly diagnosed it as UC.

    Also, I always have to inject myself with heparin (warfarin is the tablets, heparin is the injection) as not long after my 1st flare up I was diagnosed with multiple blood clots in my lungs (i was only 25!) and they said it was probably caused by the UC as apparently your blood acts differently during a flare especially when you bleed lots which I always do and so your more likely to get clots but above is also correct as all patients in hospital no matter what the problem get jabbed in the tummy while they are in bed all day and not getting much exercise.

    i dont want to scare you though as i was told it was a very rare complication!

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  • Posted

    Hello there,

    I hope your husband is ok and am thinking of him. I was diagnosed with UC when I was 16, I had apparently had it for a year. I went from 8 and 1/2 stone down to just under 5 stone and lost 2/3s of my blood and needed a blood transfusion. So I completely understand how tired and scared you and your husband are. My mum ended up taking me to my local A and E because my GP kept telling her I had a stomach bug, that went on for 4 weeks.

    I digress, sorry. I don't know what your husband is eating, if anything but my consultant, a Professor Walter Melia, Darent Valley Hospital in Dartford, Kent sticks me on a Low Residue Diet. A lot of consultants don't agree with this but because of the sort of food you eat, it's really bland and boring, it gives you gut a rest and therefore helps remission. I also know some people believe that certain foods groups may or may not upset your system, you have to find what works for you. The only good thing with the diet is that when you come to introduce more food you can do it slowly and see what works and what doesn't.

    I have mentioned my consultant, he is actually a very well respected member of our medical profession and UC and Chrones are his babies and he knows his eggs. I put my health in his hands and what he says goes.

    Be patient, it's not easy, it took my system about 3 to 4 years to settle down. I know that steroids are not good for you, I should know I've had my fair share but if your husband is taking them orally, eventually and he gets the slightest upset or it doesn't feel right, don't cut down, stay on it for a bit longer, it'll be worth it. My old consultant used to try and take me off of the steriods in about 2 weeks and I would always end up with a flare up. Since I took longer to come off of them, may be six months at the most I get a flare up every 2 to 3 years, usually after a colonoscopy.

    This is just my personal exprerience, everybody is different and you had to find out how your body works. I doesn't take long to start listening to it. If your husband doesn't have to have surgery, a good start is to make a list of toilets when you go out and to buy a radar key for the disabled toilets. These are available from your council and most work around the country, very handy.

    If you have any questions please ask, I've had most procedures done, apart from x rays and barium meals, but I've been poked around over the years.

    By the way I will be 34 in a few weeks, so 18 years is quite a long time.

    Gemma x

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  • Posted

    Hi pool mum, have just logged onto website and read your dilemma. I was diagnosed with uc approx 5 yrs ago which was treated with medication for the first 3yrs. However whilst on holiday in spain 2 yrs ago I became desperatly unwell and was rushed to hospital as soon as I returned to scotland. I ended up having to have my large bowel removed and a colostomy bag for 9 mths as medication did not work, i then had the reversal op and for the last yr and half have been quite well although I had to watch what I was eating. This week however I have discovered that the colitis has returned, I am very apprehensive as to what this will mean as I couldnt cope with having to have a colostomy bag again as I became very depressed - told my husband to go and find a new wife, luckily he didnt listen to me, and went through a terrible time. I have found out that once you have uc you have it for life, you need to stay strong both for youself and your husband and you will come out of this. I dont know how old your husband is - I was only in my 30's with 2 beautiful daughters, not that age has anything to do with it, but your husband will be well again, it will be a long road but he will get there, take care D x
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