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Hospital admission for IV steroids to treat UC

Posted , 6 users are following.

cjb106
cjb106

I’m seeking advice from anyone who has had inpatient IV steroid treatment for UC at a UK hospital.

I am in a very bad flare and oral meds are not working. I am currently faecally incontinent and have barely left the house in weeks because bloody diarhhea is running out of me almost all the time. The only control I have is not to eat or drink for several hours before I need to be anywhere. I find that if I pad up, it can give me a 30 minute window where I can get shopping etc.

I saw a new consultant on Wednesday. He said I needed to be admitted immediately to have IV steroids. He frightened me by saying that my bowel could perforate unless I get immediate treatment.

 

He sent me to A&E but they would not hand me over to the IBD team who were (according to the consultant) waiting to treat me as I am very dehydrated and they could not find veins to take bloods or insert a cannula. I was passed from a succession of A&E nurses and on to a doctor none of whom could carry out these procedures. We reached an impasse where although they couldn’t do the procedures, they would not hand me over to the IBD team until they had performed them.

After four hours in A&E getting nowhere, I signed myself out and went back to the gastro clinic to see if they could arrange the admission. The consultant was now busy in an endoscopy clinic. They did call him but all he would say is that I had to go back to A&E despite my explaining why I could not get past them to be admitted. A nurse explained to me that though the consultant wants me to have urgent treatment there are probably no beds and that is contributing to me being given the runaround.

I went home and next morning called the gastro team secretary. She said she would have the consultant call me but so far he has not. She has now gone on leave and the IBD nurse is away for three weeks and their helpline closed. It is proving impossible to speak to anyone in the gastro team.

I feel I am being badly let down by the hospital and am racking my brain to think of a practical solution to this. I know the NHS is underfunded and underresourced and I am frightened that my care is falling through the cracks as a result. I have been without care for my IBD for six months since my old consultant retired and his patients not picked up by anyone else. I have spoken to patient liaision at the hospital to see what I should do and have been advised to go back to my GP. I’m pretty sure that’s a fobbing off but wait to see what, if anything, she can do to help me get some care.

So my question is how does IV steroid treatment work? The consultant said I would need to be in hospital for a week. If lack of beds is the issue could I have it done as a day patient? I live only five minutes from the hospital and could easily get there on a daily basis. How are the drugs administered? Dripped 24/7 or in controlled periods over the course of the day? How do they make one feel? Does one have to be regularly monitored? Is it really necessary to be IN hospital to have this treatment?

Thank you.

0 likes, 5 replies

5 Replies

  • helena108
    helena108 cjb106

    Posted

    Hi

    My consultant had me admitted as emergency the same day by the gastro ward but was at ten at night so they didn't lose the bed the steriods were administered by injection 4 times a day so one was at about 2 in the morning. To be honest I don't think they did much good this was 18 months ago and only being diagnosed 4 months before hand July 2015. Am having a Panprochcolectomy on the 22nd may as want my life back and have not heard of anyone regretting having a colomosty bag. You need to speak to the consultant asap or go back to ae and refuse to leave

  • bustergut1
    bustergut1 cjb106

    Posted

    Hi cjb106

    My medical condition had been similar.

    This all sounds a nightmare & something you Definitely don't need when you're unwell. It's s series of unfortunate circumstances that you appeared to be caught up in.

    Firstly by the sound of it you are very unwell & yes worse case scenario you could be rushed in as an emergency & surgery could be involved.

    I don't want to frightened you but when we have Ibd I think we go into a sort of denial.

    The a&e probably have a duty of care to rehydrate you & check you are stable before handing you over to Ibd team but as you were so dehydrated they found this difficult. If you discharged yourself there's nothing they can do but I do understand why you did this. I say all of this because I was sent to hospital by gp on eve of 18 Dec '15 for meds & had no idea they were admitting me via a&e. I arrived at 6pm & at 11pm said I'm going home! They said IF you discharge yourself you'll have to go back to your own gp. I stayed & they found me a bed on medical admissions ward at 1am & then a bed on gastro ward the next day.

    So, when you have IV steroids you have a canular put into your arm or back of hand & the dosage of steroids is administered via this. In between that you'll prob have a drip via the canular to rehydrate. They also take bloods ( found out I was low on potassium) & generally monitor & look after you. I started to feel well very quickly, which made me realise how unwell I was when admitted to hospital! They may keep you in for 5-7 days as the steriod dose needs to be administered regularly over that period of time & you need to be monitored & checked for how you are progressing. It's a much quicker more effective way of targeting your condition as you cannot go on as you are. The second time I was admitted to hospital for IV steriods was end on Nov '16 this time at My request as again I was so unwell & weak. Within 24 hrs felt So much better. Then it's just of case of waiting it out (5days) until discharged. You'll be able to get out of bed & move around. You must go back to gp urgent appointment if that's your quickest route into hospital. Once you get the IV steriods you'll feel so much better. They'll then put you back on oral steriods to continue remission. You should expect/ demand a follow up appointment fairly soon after with Ibd doctor to discuss your future treatment. All the best wishes. B x

  • jenny39132
    jenny39132 cjb106

    Posted

    Hello so sorry to hear your in a bad flare and its discusting the way the a and e department have treated you, you need to go back there asap and get them to contact your consultant and let him explain to them, they should be givin you steriods iv straight away in a and e and drip to hydrate you aswell, ive been a and e myself 4 times since august last ur with bad flares and i wait no longer than 45 mins to be seen even when they r busy coz its an emergency if ur bleedin n avin a flare, u should tell the a and e department that if ur bowel was to perfrate u would be suein them due to neglet on their part, ive waited on a bed for 24 hrs in a and e coz there was no beds but i still recieved treatment while i waited, sorry if my msg seems harsh but it is serious and u need treatment and its not fair on u bein fobbed off like u have, good luck
  • esther77657
    esther77657 cjb106

    Posted

    I had a Crohn's flare and went to see my GP. She sent me to A&E with a letter.  I was in A&E for at least 4 hours, admitted and a bed was found on the bowel ward.  I was given steroids via IV line, 4 times a day, also fluids continuously. I began to feel better after about 4 or 5 days.  I was kept in for 10 days, during which time the steroids were changed to oral tablets, starting on 40mg per day and reducing by 5mg each week. I had no time to research steroids (I usually like to know a bit about what I am taking) but was very happy to do what I was told in order to avert major surgery that was hanging over me! The steroids did their job and personally I have felt so well on them that I am sort of disappointed to have finished them! I know I should be pleased to be off them in reality but they worked wonders for me in so many respects.  I have RA too and my joints have been fantastic.  I was also put on an anti-TNF, Humira, which seems to be doing a good job.  I really feel for you; your situation sounds dreadful.  My advice would be to do whatever you need to do to get yourself back to hospital and sit it out. Perhaps I was lucky that a bed became available that day, but when I left hospital, there appeared to be lots of people waiting for beds. I wish you all the best with your on-going treatment.

  • sheila91262
    sheila91262 cjb106

    Posted

    Hi, I am concerned for your health. The dehydration alone without the UC symptoms is enough for you become very, dangerously sick. Go to A&E and they will treat you as an emergency and attempt to rehydrate you by any means. Your organs may be begin to fail as you are so malnourished, your body starving. If you are hardly passing urine at all,feeling dizzy and thirsty, mouth dry etc your could be seriously dehydrated. I am assuming they couldn't get a needle in to administer fluids. I would sit on the loo and drink like there's no tomorrow just to get those liquids in. Remember much of our fluid intake is from food and if you have stopped eating and passing loads of undigested food, blood and mucous then it is not good. I speak from experience, my son was in a terruble flare and stopped eating, his medication passed through undigested and was close to death. He was taken to A&E and they managed to get a line in after several attempts and rehydrated and medicated him by IV, they treated him for low sodium and a few others as his body had excreted them and they weren't being replaced by his diet.You need treatment as soon as possible. Don't worry about the details. Sheila.

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