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ulcerative colitis

Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
i need to get this off my chest so here goes;

in december my husband started pooing 8 times a day with excessive bleeding afterwards.
our crap gp told him he had salmonella poisoning, and gave him antibiotics.
when these didn't work he changed the diagnosis to a viral infection.
after 3 weeks of hell,and the poo count up to 15 i finally got him to go to a & e. they took a blood test and told him he wasn't anaemic and to go home.
back to the gp who finally referred him to a specialist. whilst waiting for the appointment the poo count got to 20 a day and the blood loss got so bad he kept passing out, so i called the emergency doc.
he said it sounded like chrones disease or ulcerative colitis, and to get him admitted to hospital the next day.
when we got to the hospital they put him on steroids and told him to come back in a months time.

2 weeks later he saw the consultant who whisked him straight into surgery.
he found my husbands colon so inflamed and ulcerated he couldn't perform the procedure.
he was admitted to hospital for 3 weeks and told that if he hadn't been treated within another few days he could have died from something called mega colon.
he was put on intravenous steroids and immuno suppressant drugs.
pleasant things immunosuppressants, one of the side effects can be leukaemia . luckily the only side effect he had was that it damaged his liver, so had to stop taking them. he has now been on steroids for nearly 5 months and will have to stop them soon. only prob is as soon as he reduces his dosage the bleeding and diarrhea starts up again.
he has had 3 months off work and is back part time but if it starts again i don't know what we will do.

the kids have found it really hard, my 6 year old daughter thought that he lived at the hospital, and wouldn't be coming home, whilst my 11 year old started going off the rails at school. things are back to normal with the kids but i am worried sick about what will happen next.
the immuno suppresants stopped it all, but he can't take them anymore so if he gets bad again he will probably have to have a colectomy ( where they remove the colon and he will have to have a bag)
as he is only 34 this has come as a bit of a shock to us both.

sorry for going on a bit.

Comments

  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    sounds bad :( i was quite similar when i was 14/15 with my crohns i would be so inflamed i couldnt walk or anything and was bleeding all over the shop was difucult at first as no-one belived me and the gp's were the same as yours really at first saying i was fine when i clearly wasnt it must be worse in your situation i would imagine with you having young kids not knowing what is going on with their dad,

    i would probably tell them and explain too them but assure them that their dad will be ok this would hopefulyl put some faith back into them and your kid thats going off the rails at school may calm down.

    also watch the stroids i found them to be highly addictive as you have to wean off them you cant jsut stop them i found it extremely diffucult too come off them took me around 10 months to come off them first time not too bad the second time mind you but still

    as it says it comes and goes and lately (until december of last year) i had been clear for a good two years so fingers crossed for you that he will come into a period of it subsiding for a good few years

    hope things get better for him and yourself soon
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    People always forget about the other people affected around the patient. They are the ones that usually find it more difficult as the patient is being treated and has contact with a plethera of different folk.

    I have to say that I nursed a 37 year old guy with a colostomy, and amazingly he was the happiest he had been in about two years. His life had been turned upside down because of UC, he had not worked in 6 months. The 'bag' gave him his independence and sense of dignity back - although was embarrassed at first at the thought of emptying the bag - but with a little bit of gentle encouragement, it became second nature.
    I am not saying that you should seek or hope this for your husband as it is totally life changing, I am merely informing you of an experience of my own.

    Stay strong and best wishes xx

    Paul a.k.a. Panthro
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    awww thanks guys. :)
    i explained as much as i could to the kids at the time without freaking them out, but you never know how they deal with things.
    good news tho' about my eldest.
    i saw his teacher today and she said that he has improved 100% and is almost back to his full capability so thats a relief.
    the hubster is now down to 2 steroids a day but i'm on a knife edge every time he goes to the loo still, and its driving him batty!
    still it shows i care.
    thanks again for the support and info i do appreciate it :yippe:
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    Well thats what this board is for.
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    You can have fairly serious surgury and not have to have a bag.

    I know someone who had colon cancer, which is normally fatal because it doesnt show untill its too late.

    Anyway, he had his whole large intestine out, and they just stuck the two remaining bits together, so he goes to the toilet like anyone else.

    Just thought I'd tell you, you might want to do some research, if you can avoid the 'bag' then its probably a good thing.
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    There are a lot more people who have a stoma bag than you might think.
    Wishing your husband a swift recovery and hope you and your family keep on top of it all :)
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    yeah i have heard of the op where they join the two remaining bits of intestine together, its called a j pouch.
    i've been told that you get the op to remove damaged colon, have a bag for 6 months then you need to have another op to jin the two ends together.
    i think thats probably going to be the next step, but we will find out next month after he has another exploritory op.
    i hate hospitals grrrrrr
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    At least he might not have to have the bag for ever then, though if you do have to do without the large intestine you can get dehydrated very easily and you have to be very careful about your diet. Its still better than the bag though.
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    he has to be pretty careful about his diet anyway, cos a lot of things upset his stomach now :( no more curries, chillis or beer poor him.

    he has been told he needs to drink more water so he has been buying bottled water in bulk, cos our tap water is really chalky!
    thats the price of living on the south coast.
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