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The last two days have been painful.

Posted , 5 users are following.

bob1234
bob1234

The last two days have been painful. Now at 11 45 pm they are easing.

The pain comes in waves. I find laying of my left side helps. I then catnap.

Despite the pains I managed to fix my man cave door and unblock a drain. It took 45mins. It made me feel better just because I have achieved something which needed doing.

My wife is my carer, I am disabled also with back and knees, I try to do things myself. She's a diamond and my wife not a slave.

I no longer drive a car. Colitis is very life changing. I haven't been out for 6 months except for hospital both times in an ambulance.

A vegan told me that colitis is because I eat the flesh of dead animals. So I offered him a bacon butty with HP sauce. It's like religion--- guilt

Tomorrow all being well I am going to tidy my man cave up.

I am lucky in that I have a large supportive family and I am money wise safe , just. Especially not driving. I get stuff delivered. Tesco and Asda are good.

It must be far worse for a younger person who loses their job and house because they can't work.

So when I get into the woe is me bit. I count my lucky stars, things could be worse.

0 likes, 35 replies

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  • bustergut1
    bustergut1 bob1234

    Posted

    Hi Bob its 2.30 am & I'm on line reding your post! Did my usual of crashing out asleep on sofa for 3 hours then waking to go up to bed & Wham steroids  kick in again & wake me up big time. So just cleared the kitchen, put washing in machine & hung it out on the line in the dark- as you do!

    youre so brave- pain is horrible & draining. What's tha advice to control it?

    i know what you mean about achieving tasks etc. when I'm really poorly can't even concentrate to read a book & jigsaw puzzle nearly got thrown across the room! I really enjoy craft activities especially needlework & ive found recently I've been able to immerse myself in that & we now almost have some curtains made that have been waiting a couple of years! Ha crazy could have bought ready made ones ten times over!

    your wife sounds so supportive & obviously cares about & loves you loads. 

    my husband great but I think sometimes so worried feels helpless.

    im trying a new drug vedolizumab as all other meds have failed to control colitis, only steroids hold me & ive been on them since September 2013- far too long! If this doesn't help then surgery decision July/ August..

    3rd grandchild born 2 days ago & another grandchild due November I need to get well now & get on with life.

    what a C**p illness this is, hope you're ok. Keep posting, x

    • Maryjo
      Maryjo bustergut1

      Posted

      Hi.....well 3 weeks post surgery now and even at this early stage.....I can safely say surgery has best thing I've done for myself in a long time.  I'm still taking things easy but am able to do that little bit more every day ! 😊 I can eat what I want without being crippled with cramps etc. I feel so much happier and upbeat.....the bag is the simple bit...heck I can sort it out quicker than the time it would have taken me to go to loo pre surgery . I have put on about half stone weight since coming home . 

      My sympathies to u guys still suffering...I haven't forgotten how bad and how ill one can feel but I must say surgery is the light at the end of the tunnel .....I do know it is very hard choice and a very personal choice ...it took me long enough and that was only cos I had really no option at end.....it's just mind set we have when it comes to body  image and thought of surgery...I was no different ....but why suffer when u can be out enjoying life ! 😀MJ

  • Maryjo
    Maryjo bob1234

    Posted

    Hi Bob....forgot to include ur name when writing to bustegutt but that info I wrote could apply to urself as well. My sympathy as to how u feel at present ...it's one helluva of an illness...it's robs u of ur good health and time spent feeling half well ...for info I hadn't included that I had permanent ileostomy 3 weeks ago...bustegutt knew that . Anyway I hope u feel a little better soon  MJ
  • bob1234
    bob1234

    Posted

    Thanks for the replies so kind.

    Today the pain came back. So all plans got dropped.

    My wife is a diamond ( married 41 years) She keeps a check on my pills especially the morphine. She logs everything in a A6 note book.

    I have spent 40 days so far in hospital every day she visited.

    Colitis makes one OCD about poo. I am leaking mucus and liquid poo 24/7. Fortunately I have a wet room/toilet. I have a bottom half shower frequently plain warm water only with Dove liquid soap.

    I play guitar which helps. Some times I go to 11 on the amp and get very loud. Its better than howling at the moon. I can't read because I can't concentrate. Funny thing is I vsn read

    • bob1234
      bob1234

      Posted

      The posting got cut off.

      The last sentence was Funny I can read music ok.

    • bob1234
      bob1234

      Posted

      Its Sunday 3.30pm and pains are still there plus a back ache. I want to go into hospital and have a stoma and bag. The quality of my life is daily going down hill.

      Tuesday I will talk with my GP.

      My problem is that they want to do a colonoscopy. But they want me to take a strong laxative before. But I tried the laxitive and I was on the point of passing out after the first dose. Pecolax. Then they sent me moviprep which I refused to take because on their web site moviprep says do not take if you have colitis.

      The NHS saved my life so I can't complain because the medics do care. But when one gets into the system as a number the NHS tries one size fits all.

      Bob

    • sheila91262
      sheila91262 bob1234

      Posted

      Hi Bob, just read your posts re UC. I have written lots about my sons situation in the last six months as he was very bad with newly diagnosed UC. He has had a stoma now for 18 months and compared to the dreaded disease it was so much easier to live with, as you will have seen from others on these forum. He put on the weight he lost and plays loads of sport and eats anything he wants without the pain and urgency. He is young and it wasnt easy to take at first, living with a bag but he is much happier, no-one wants to live with the pain and symptoms and sideaffects of the drugs. He is drug and pain free now.

      I have urged people to go to the experts at St Marks London or John Radcliffe Oxford, the leading UC treatment centres. Good luck to you and yours.

    • Maryjo
      Maryjo bob1234

      Posted

      Hi Bob....u do sound as if u r at end of ur tether......I do agree with Shiela and I've only had mine such a short time but already the improvement is immense . I would def have chat with gp re the moviprep etc...I know they are not easy to take....I've had enough them in my life time ....I had routine colonoscopies. Failing that speak to ur gastro intestinal consultant and c what ideas he has. ☺️ MJ
    • bob1234
      bob1234 Maryjo

      Posted

      I have no choice but to ride the pain

      Thankyou for your kindness.

      Bob

    • sheila91262
      sheila91262 Maryjo

      Posted

      Hi MJ,

      Ive been away for a long needed break so havent seen posts. So glad to hear you are doing well and mending bodily and mentally. LIving with pain and uncertainty is grim and invades every part of life.

      I have mentioned it before but its worth saying again.

      Remember if you have UC or Crohns you are more likely to get DVT so beware. Also you may have been told this by a doctor but if you have had the ileostomy you should take B vitamins as your body is poor at absorbing these but not vitamin K as it interferes with the post surgery blood thinners if taken. Onwards and Upwards, a phrase we use now in the family!!

    • Maryjo
      Maryjo sheila91262

      Posted

      Hi Sheila... Thank u for that...no I only had blood thinners in hospital.. I actually take vit k Vit d magnesium and calcium for osteoporosis.  I take krill oil or fish oil , tumeric capsules...they r brill....if u haven't read up on them do a little bit research on them ....olive oil capsules and serrapeptase...I'm also taking multi vit at mo...I do hav vit b sublingual spray which I'm not using till I've finished hospital vitamins..it's great to have surgery behind me now and to be recovering...my only blip at present is a shallow perineal wound which I'm having daily dressings on...bit of an inconvenience but hopefully clear up soon . Other than that I have no mega complaints. My mood is now so much better ...Prob relief at having all behind me and also at improvement in health. 😀 MJ
  • bob1234
    bob1234

    Posted

    Today I got the doctor out. He has increased my steriods 8 fold. I am drinking fluids only no food.

    I am planing to eat food late tonight.

    The pains are better.

    Question. Can dehydration cause kidney pain thats feels like lower back ache.

    Bob

  • Maryjo
    Maryjo bob1234

    Posted

    Hi Bob... Sorry to hear things hav got so bad 😔 u must b on very high dose of steroids now. Re back pain....it could be related to inflammation from very inflamed colon...I would have got back pain for that reason .....or of course urinary tract infection is another reason for back pain ....hav u temp or feel feverish or hav hot and cold spells ? If eating eat lightly avoid fruit and some veg can annoy uc or high fibre stuff  MJ
    • bob1234
      bob1234 Maryjo

      Posted

      7.30 pm. The pain is less now. I am drinking weak blackcurrant cordial. My back ache is less. I still get the about to open bowel feeling but it has less pain

      I am thinking of rice pudding for later.

      I am wary of what I eat.

      The 111 service is hopeless I first phoned at 6.38 pm and the doctor turned up 18 hours later 12 noon.

      The triage nurse asked if I had taken anything dangerous.

      I wouldn't do such a thing because of the impact it has on others.

      However the doctor who came round was nice.

      I am on maximum morphine after morphine only a hospital can help because of the dangers.

      The main thing is I shall be able to sleep.

  • Maryjo
    Maryjo bob1234

    Posted

    U don't have lactose intolerance re milk in it ? I'm glad to hear u got some ease now .thankfully our service out of hours in NI is much better . Was gp not worried re ur state of present health as u do not seem to be very well Hav u lost much weight and what dose of predsone r u now on ? MJ
    • bob1234
      bob1234 Maryjo

      Posted

      20mg a day.

      He was concerned and check my vital signs.

      I have lost about 2 stone down to 14 stone 5ft 11 in male. I am still losing weight but at 14 stone I have a reserve.

      I have checked out lactose and changed the rice pudding for Chicken soup. I dont think I am.

      I have to get better because not only is my life on hold but so is my wife's. We are both getting old.

      I am a skilled craftsman and my skills are in demand. It's such a waste.

      Bob

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