Hi everyone...new to this forum...I don't have the disease myself, but my husband does.  He was diagnosed 5 years ago after an abcess appeared in his small bowel, and narrowly avoided surgery.   Things gradually went down hill untill oct 09 when he eventuallly had a bowel resection (approx 12 inches taken away).  He had lost a lot of weigh, on a polymeric diet before surgery....Now 7 months later he is the max dose of azthriopine, pentassa and has had 4 infliximab infusions, tried another course of prednisolone  (which did nothing) and he is as bad as ever. He does have 2 strictures which showed up on an x ray in jan.  We have done all elimination diets, he does take a peppermint oil tab which help's with trapped wind.  He has been prescribed morphine which we have at home, because he just can't cope with the pain sometimes.This week has been really bad, he has lost about half a stone this week alone and his stomach is very distended and he has put himself back on the fortisip.  Emergency appointment with his consultant in September!!!!!  Anyone have any advice on what to do next, any med's that we could push for.  We stupidly thought that surgery might actually put him in remission, but to see a 6ft bloke in tears because he can't cope anymore is heartbreaking...Sorry to go on , but any advice would be appreciated x

Your poor husband!! and poor you! I get so cross when I hear how long it takes to get a so called 'emergency' appt.  I was in so much pain and feeling dreadful, even in hospital for 4 weeks, when i was told I needed to have a bowel resection...."urgently".  When I got the letter through saying that I got an appt to just SEE the surgeon in 3 months time i could of cried!  In the end, we went privately and I had the resection within 3 weeks (that was in March this year.)  

I could only think that it's the strictures causing the problems.  When i first had tests to look at my bowel, they found my whole small intestine riddled with Crohn's.  I was immediately started on infliximab, steroids and azathioprine.  by the time I had the surgery, except for the 12 inches of stricture, the rest of my bowel looked good which means the drugs worked.  But if he has a stricture (or 2 in his case!) no amount of drugs can get rid of it - only surgery.  He really MUST hassle his doctor to see someone quicker, and if that doesn't work, take him to casualty.  Someone will HAVE to see him there.  He cannot go on in so much pain.  I know, because I suffered from extreme pain and tried to 'carry on' until I eventually collapsed at work.  Unfortunately surgery doesn't put a stop to Crohn's.  There's always a chance it will come back.  But the good news is, you can have years in remission.  I actually had nearly 20 years without any severe flare ups.  In fact all my friends now didn't even know I had Crohn's until this latest flare up.  

I really wish you guys well.  Please get your husband looked at and keep us updated on his progress.

Hey there,

It's so frustrating trying to find something that works effectively, with minimal side effects. I too am in a similar situation of trying to find a suitable medication to treat my crohn's so I can start living my life again. Please have a look at the following website: www.ldnnow.co.uk. Also google the drug, (Low Dose Naltrexone or LDN) and try to learn as much as you can about how successful it has been in treating many people who have severe crohn's disease. I was fascinated when I came across it. Sadly, it's not licensed here and although doctors can still legally prescribe it, many won't. I'm still in the process of trying to find one that will....it has no (or very few) side effects and that is not worth giving up on!!

A friend of mine has MS and she is paying privately for LDN,  I think she said about £30 a month.

And as for the emergency appointment, I know I shouldn't say this, but have you tried going through casualty!  I'm sory if this suggestion upsets anyone, but you have to work out how desperate the situation is, needs must.

I met a lady in hospital, who was discharged while I was there, she needed to come back in within an hour of being at home, so her husband dutifully drove her back, she then had to wait hours in casualty, had they called an ambulance then she would have been seen immediately.

I'm not in favour of abusing the NHS, but it seems it's ok to abuse us.

Hi Rachel, I'm sorry your Husband is having such a rough time of it. I agree with Jennifer that it may well be the strictures causing the problems. After a stay in hospital at the beginning of this month I am now booked in for surgey in June to widen my stricture int he hope this will cure my pain and mean I can eat again (am currently on the soup and fortisip diet!)

If you can't get in to see your consultant earlier I strongly recommend going to a&e whent he pain gets unbearable. I refused to do this for months and wish I had given in and admitted I couldn't cope earlier, as I was seen byt he surgeons while in hospital and it allseems to be moving quite fast now. Making you wait until Sept for an emergency appt is awful!

I hope you get some help soon xxx

Quoted from Julie

And as for the emergency appointment, I know I shouldn't say this, but have you tried going through casualty!  I'm sory if this suggestion upsets anyone, but you have to work out how desperate the situation is, needs must.

Quoted from Julie

I met a lady in hospital, who was discharged while I was there, she needed to come back in within an hour of being at home, so her husband dutifully drove her back, she then had to wait hours in casualty, had they called an ambulance then she would have been seen immediately.

Julie, you are 100% spot on.  Unfortunately those like us who when we need A&E for whatever reason try to make our own way there instead of tying up an ambulance out of 'unselfishness' (if thats a word! lol), then sit for hours on end whilst someone with a bruised big toe or something who calls an ambulance gets straight through almost.  

Things really need to be sorted out within the NHS and i feel sorry for the doctors and nurses who have to put up with the frustrations of such a system when they try their best but are restricted by people further up the chain, who quite frankly, it would appear (if not proven) that they understand very little about healthcare.  

So, Rachel, I too would say take your husband to a&e if it happens again, because from the sounds of it he is in pure agony compared to the trivial matters of many who clog up the healthcare provisions in this country when they can use other routes, or those who by choice get themselves drunk, into fights etc and then are brought into a&e when really there is nothing wrong with them.  I hope your husband's health improves and I'm sure its hard for you seeing him like this.  

Rant over.... lol.