Advice needed desperately

Posted , 7 users are following.

My husband was diagnosed with UC around a year ago and was put on mesalazine. In October last year he went through a bad flare up, passing blood & mucus about 15-20 times a day with painful belly cramps. His ibd nurse put him on prednisolone steroids for 8 weeks. After the 8 week course was up he went back to how he was before and his nurse put him on another course of 8 week steroids. The second course has recently ended and again went back to how he was. His nurse now thinks he is having withdrawals from the steroids so is on another 4 week course of them! However this time he is feeling no better on them, if not worse than he ever has done. He has has no energy, has lost a lot of weight and is not getting anywhere with his nurse or consultant, he has an appointment to see his nurse in a month but I do think he needs to be seen a lot earlier but they are not interested. So we don't know what to do now. He has also had 2 IV iron drips in this 6 month period as he is severely anaemic. Has anyone got any advice on what we can do next?

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12 Replies

  • Posted

    Hi,

    I'm sorry to hear the agony you're husband is having to go through, uc is a horrible condition. I too have had multiple courses of steroids in the past to gain control of colitis. I take it it's oral prednisilone steroid you're husband is on, which are usually the best one for colitis. if the consultant or ibd nurse won't see him earlier & he is losing weight ask to speak to your hospital's PALS people (stands for patient advice & liaison service).

    Don't know when your husband had his last scope, but maybe they should do an urgent colonoscopy to assess current state of colitis & consider other meds (there are a few & what works for one person doesn't always work for another).

    I hope this helps. take care

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  • Posted

    Hi Ashley,

    i am in the same boat as your husband, diagnosed a just over a year ago with UC and have permanently been on prednisolone steroids. If you take a high dose of roids it seems to ease up a bit but as we all know being on roids long term isn't good for us unfortunately that is all that seems to work. I too have been on mesalazine and sufasalazine and nothing seems to work! Depressing isn't it! Has your husband recently packed up smoking? Only there seems to be a link between packing up the ciggies and developing UC. Im not over impressed with the medication that they seem to chop and change with me so im looking into the nicotine connection. google search "can nicotine cure colitis" and make up your own mind. Chat soon.

    Terry

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  • Posted

    Thanks for the replies

    2looloo43, he is on oral steroids and hasn't had a scope for over a year. Think we might ring PALS and see if they can help. He's only ever been on mesalazine so I do think they need to try him on something else.

    Terry, he quit smoking around 5 year ago but I've never looked into the connection between the two. He has an active job working out doors which isn't great at the minute as he's always needing the loo.

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    • Posted

      Hi again Ashley,

      I know exactly where he is coming from regarding work because i have been there! I work in the building trade and this awfull desease has now put me out of work. Working on site the loos are far from where i was working on the 8th floor and the toilets on the ground floor. Well i messed myself just one time too many not being able to make it there in time and it got the better of me an i just could not do it any more. Its so embaresing, a grown man not being in control. Depending on how bad he is? i took the decision to wear my wifes panty liners the ones with wings on into my pants and it buys you a little time in the event of messing yourself. Also i carried with me Andrex Washlets to clean myself after the event because the alternatve is dipping toilet paper into the toilet water to clean yourself. It helps believe me! Anyway at present and this is as recent as last Friday i have taken to slapping on nicotine patches and bought myself a vaping kit for the intake of nicotine! Its early days yet on whether it works or not but i am so desperate to get back to work i will try anything even........ going back on the fags which is not a good idea. Honestly google search "can nicotine cure colitis" it is a real eye opener.

      Terry

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    • Posted

      I've been reading about the nicotine and I think we may look into the patches as it's getting to the point where he will try anything. He's even considered having a stoma bag as it's getting him really down. You'd never think quitting smoking could lead to this though.
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    • Posted

      i know its incredable isn't it who would think it possible but its there in black and white! I spoke to my GP about it and he knew about the connection but anyone from the medical trade is not going promote it are they. But whether it works for all of us yet is to be confirmed? I will let all know on this web site whether its working for me or not. Show him what i said about the panty liner thing! I know its not very manly but neither is messing yourself.

      Good luck Terry

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  • Posted

    Hi again,

    I have had sulfazaline, pentasa & ipocol - all forms of mesalazine, pentasa & ipocol worked for a few months, then flared again & again. I am now on balsalazide last 5 mths, which has made my scopes of colon "within normal limits" so although I have other problems (suspected ibs, bile salt malabsorption,, fructose malabsorption, & a chronic rectal fissure) that cause me the same symptoms as colitis, my colon inflammation is clinically under control with the balsalazide. like i said before though, what works for some doesn't work for everyone, but my history shows it's worth trying other meds which the specialists usually do try a few meds until you find one that works. it is very frustrating though the process of seeing a specialist, getting put on something else & waiting to see if it works-it takes such a long time. But do not be afraid to keep pushing, it's your husbands health & livelihood at stake, & he needs medical help now - not in a month. If you contact PALS, you may find it helpful to write things down as you documented in your 1st post on here, to make them realise the seriousness of his current symptoms. I used the PALS at my hosp recently & I typed out my history in brief & my continuing issues & made an appointment to see them; the lady I saw was very helpful & progress has been made because of that meeting. take care & good luck.

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    • Posted

      He is currently on octasa and has had pentasa in the past. I think we may contact pals, as we are getting no where. His consultant has said he is not concerned and does not want to see him, I don't understand how it's not a concern that he has been dependant on steroids for the last 20 weeks and is getting no better. He has booked himself in for a blood test at the local doctor surgery to check his iron levels as he is passing so much blood. He may end up having to go to a&e where someone will have to see him but he'd rather not have to do that.
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  • Posted

    Hi, I'm sorry about your husband's UC, it is so worrying and variable.

    My son was very ill with severe UC and had various steroids and anti inflammatories but as soon as the doseages went down he was back to the beginning. 

    Several things have become clear over the last 16 months, do go to the GP or A&E when very anaemic and going to loo and passing blood 15 + times as it can get to the point of the body shutting down after all the body is suffering starvation. My son nearly died as the consultan said  wait 2 weeks and then come in and go on IV meds, he waited 9 days and was only 1 day away from his body going into collapse.

    He was being seen at a general hospital and his consultant wasnt taking him seriously enough. He now attends John Radcliffe Hospital Oxford who with St Marks London are the centres of excellence for IBD. You can get a referral from your GP.

    My son lost nearly three stone and was sleep deprived and overwhelmed by the pain but his first consultant only looked at the symptoms not the patient. If you see the experts they see so many patients they have a better idea of how to treat the individual.

    I wish you well.

     

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  • Posted

    Hi Ashley,

    I saw your post and wanted to give some advice. I live in Colorado, USA and have had UC for 5 years. I had my first and and last major flare up in 2010. I was in the hospital and on my death bed on both meds as your husband unsuccessfully. Biologics is what eventually put me in remission but those are expensive so I would suggest only receiving one year of treaments. I eventually read about nicotine and I started using an electronic cigarette about 30 puffs a day and havent had any issues in 5 years. Not one flare up! I also take azathopine 125 mgs a day. The combination has worked for me. I eat what I want and only go to the bathroom one time a day, just like normal. He needs to get of the predisolone and metalazine as they don't work for most people. I hope this helps. My life is normal and I think his can be as well.

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  • Posted

    Thanks everyone for the replies.

    We have been to a&e today but all they have done is increased his prednisolone until he sees his consultant in 3 weeks time. They said they don't want to change his medication whilst in a flare up so hopefully when he sees his consultant he will be given something different to try.

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    • Posted

      Thats fine as long as you are well enough to carry on for 3 weeks, dont risk pushing yourself to that date at all costs, after all they dont know you so they are making a ball park judgement. If you carry on losing weight and struggle to eat go to Gp and ask for a blood test to check your health. Lots of luck.

       

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