Advice needed desperately

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

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

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.

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.

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.

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.

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.