• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Last Remicade?


ele mental leprechaun
I went in for my remicade infusion today and the gastro nurse I dont get on with came to see me.

She told the staff not to make another appointment for my remicade. Told me she would be in touch at some point in relation to a plan.. great.. last iv and not on any other meds for my crohns.

She said they may look at Humira for me or come up with another plan but how long I wait for that she doesnt know. What am I supposed to do in the meantime?

Am a tad fed up tonight and a bit twitched that I now have no pharmaceutical backup for my crohns at all.

Even though I dont get complete relief the remicade has been the only drug that has improved me for about 3wks out of the 6 to feel I can live a reasonable life.

Its really thrown me this news today. I thought they would continue the infusions until I had the tests they want to do and can work out a direction to go in but no we stop now and I hope for the best that they sort this out before I really end up in a pickle! Grrrrr
That seems wrong. They can't deny you treatment, can they. I would talk to the GI there instead of the nurse. Best of luck


ele mental leprechaun
Thanks Jeff!

Its really thrown me as I said. Thing with my gastro team is I have to go through the gastro nurses to get an appointment with my consultant.

The only other way is to go to my GP and ask him to try and sort it out. But is liable to cause a whole "to do" and am too knackered at the mo.

I will probably wait a few weeks and see if this gastro nurse contacts me and if not will get on to the other one as I know she will sort things out for me rather than leave me hanging.

Was just so stunned that I now have nothing as opposed to continuing til I have the tests and see my cons which made sense to me if no one else.

Maybe I am asking for too much here?


Senior Member
Hey, soup.. Really sorry to hear about what's happened. Any chance your GI consult might consider LDN? Or, for that matter, would you? Thing of it is, with remi off the table, maybe now is an opportune time to roll the dice on LDN... and still have Humira as a fall back. Maybe even a 7 week initial trial, with a refill for another 7 weeks if it works.. If not, then on to Humira. just a thought. And if my thought should do the trick, you can always tell folks it was beginners luck. ;-)
Jan - you mentioned previously you have an email-contact facility with the hospital team (nurse?). i would say that "be in touch sometime" is not good enough, you need to know what this plan is and when it's due to start. i'd email them, and demand to know what's going on.

i know you feel fed up and tired out hun, and probably not in fighting mood - but you'd feel a whole lot better knowing what they are thinking..
I was under the impression that Specialist Nurses couldn't make decisions like this without the authorisation of your Consultant.

I'd be kicking up a fuss.


ele mental leprechaun
Hi Pen, Thanks for your thoughts. I agree with you about the giving of the Humira being easier and it wouldnt mean days off work for me too. At the minute the rota request sheet is out for September in work and I have had to keep ahead hoping that my iv's were continuing so that would be so much easier if they did switch me over.

Hi Kev, I have looked at LDN in the past and not sure if they would entertain it here in the UK but am going to research it again and when I eventually do see my cons (he will do my scope in the near future) I will bring it up then and see what his thoughts are.

Hey DB, Yes I do have that ability to contact them via email but there are times I mail and I dont get an acknowledgement never mind an answer to my query. I told this particular gastro nurse yesterday the fun I keep having over getting my elemental and the strain it puts on me. Last week I put in a script for 20 sachets, 2 days later I got TWO sachets with a ticket to owe the other 18. Because of my work pattern I couldnt go Fri or Mon and the pharmacy arent open at the weekend so I went this morning to get the other 18. I got EIGHT with them saying the supplier was waiting for stocks and they would let me know when the other 10 were available. I explained this was all I was surviving on and no one seems to get it!! Gastro nurse said if it continues to let her know - erm hello its been happening every time I get an elemental script since I started on the damn stuff!! So yeah am a tad fed up. Whats the point in contacting them?

Hi CL, I agree with you and so was I! However, these ones always come and see the patients having infusions and tell the staff whether we can have it or not before its started if we have had recent infection for instance. They also confirm the next booking with the staff or not. I have heard them do it for others too. This particular nurse that I dont get on with mucked me about over the Aza I was on at the time and wanted to start me immediately on 6MP (because my liver tests were climbing) getting clearance from my cons in Dec 07. She mucked things up communication wise and sent me to my GP whilst in the meantime before my appointment sent a fax to the surgery saying I wasnt to start on it!

Believe me I will only wait so long and if she doesnt sort it out in the next 3wks I will be contacting my cons via his secretary whether I get in trouble again for doing that or not! The last time I did that was over the Aza and 6MP issues and I ended up with an out of hours clinic appointment with this gastro nurse saying the confusion wouldnt have happened if I had kept the communication through her (and not let my GP try and contact my cons or with me contacting him too) in front of my cons. I was so damn tired I couldnt argue but this time she is in for a surprise if she starts trust me!!

Yeah I know its early to be posting but couldnt sleep as I have that interview for promotion at 0930hrs today and its going round in my head what I want to say etc so cant settle! Anyone want to shoot me now and put me outta my misery? ;-)
Last edited:
Oh do I know the issues of the jumping through hoops routine at my local office. They cost me unneeded money, and unneeded stress on a regular basis.

I don't really get still why/how they just deny your medication? Due to it's lack of efficacy or what? Pretty lame that they leave you hanging with a "wait to hear from us" BS line.


ele mental leprechaun
Hi Benson,

Yes the gastro nurse is saying because I only get 3wks instead of full 6wks with minimal problems its not doing enough. Am still hopping mad this morning about it. Just feel really ummm whats the word... vulnerable? because I now have no meds on the crohns front and have to hope they sort this before I start on the slippery slope again in about 4wks time... grrrrr woof!
I also can relate to the nurse being the go to person in charge of communication with the doc, as I have the same problem. I tell them I need to talk with the doc all the time as he WANTED me to call HIM, not a nurse, to check in. And all I get is the nurse calling me back later trying to handle things, and in the end she has to ask the doc herself because she doesn't know then call me back. It's like, why do they employ you, a parrot could do your job for free? :ymad:
Jan - there is always the option of writing a complaint letter to the hospital management. if this kind of neglect goes on much longer, i would be sorely tempted to do so. it seems as if you're being let down in every direction right now, which is crazy! Crohns is hard enough to cope with, plus you have other health issues - the last thing you need is an unreliable service from those who should be helping!
Good idea dingbat, I think it's wrong what they are doing to you. They don't seem to be caring about your health and because of that you should have a reason to complain that you aren't getting proper treatment.

Good luck with all of this
That sounds awful - I would not be happy with the "we'll be in touch" line - I would ring the consultant's secretary and cry - works with mine !!

I am very lucky in that my GP is married to my GI consultant so they work together very well - however I do not like my consultant and have left his office before wondering what on earth was going on.

You need to know what the next plan is - to just take you off something without an alternative is really bad.

Regarding the elemental - I never have any problems getting it, I put a script in and it's ready the next day - have you tried using a different chemist ?



ele mental leprechaun
Hi DB and Jeff, I will go down the complaints route if things are not resolved within a reasonable time span.

Hi FL, Its very rare I cry I have to say so that one wont work for me. As to the elemental and trying different chemists lets see.... I have tried Boots, Tesco, Sainsbury, LLoyds and a GP surgery pharmacy other than mine - that enough? At Tesco I was told to be thankful for the amount I got and on another occasion I did three trips which worked out at 30miles total for that script. The PCT refuses to let me get my meds and elemental at my own surgery because I dont live within a mile radius and other pharmacies are nearby (new rules last year).

I have contacted SHS the manufacturer and told them of my persistent problems and they told me to tell the pharmacies to contact the supplier and tell THEM to contact SHS and they would supply immediately. Telling the pharmacy this and it coming to fruitition is another thing!

The gastro nurse said to me I wasnt alone with these problems hence the comment to let her know. Dont know what she will do about it and she never said.

Will see what happens when I go tomorrow to pick up my script.

Oh yeah and its my week for knocks - I didnt get the promotion I went for. The reason? My sick leave last year of 4mths (due to my crohns) I apparently need to prove I have stamina as they have concerns the job will be too sore on me despite being competent to do it ! Grrrrr Doesnt matter I have only had 2 weeks sick leave and 4hrs last week since last Sept they want a longer time span. Anyone care to tell them about crohns and autoimmune disease?
Last edited:
soupdragon69 said:
Oh yeah and its my week for knocks - I didnt get the promotion I went for. The reason? My sick leave last year of 4mths (due to my crohns) I apparently need to prove I have stamina as they have concerns the job will be too sore on me despite being competent to do it ! Grrrrr Doesnt matter I have only had 2 weeks sick leave and 4hrs last week since last Sept they want a longer time span. Anyone care to tell them about crohns and autoimmune disease?
Aww hun that's not on - will they give you another chance to go for it ?

Awe man thas sucks. I really hope everything starts to work out for you soon.

On another note, whenever I hear you guys talk about chemists I think about street drug dealers. I don't know why.lol

Best wishes and hugs

I'm not a cryer either but I have been known to make it seem like I am crying. Actually, that's how I met one of my closest friends.lol


ele mental leprechaun
Thanks guys,

Am a bit on the down side as I really wanted the job and was gutted when they said they werent going "to offer me the job at this time". Gives me the nod in a sense they will consider me again and have been told to go in for feedback and a chat. Just disappointed at the mo and put alot of work into it. Was feeling too that the reasons too they gave were unfair when I hold down a full time job with minimal sickness since last autumn and support staff etc on a daily basis. They are happy to put me in charge when it suits but I wont get the recognition for it.

Have to decide what to do once I have got over the disappointment...
aw bless you, Jan. sorry hun - another disappointment is not what you need right now. but, do you believe in things happening for a reason? i do. maybe if you'd been given this promotion, and taken on the extra duties it involved, it would have been more stress for you and in turn made the Crohns and other symptoms worse... see where i'm going? this may not have been the right time for you - come back to it stronger and healthier, and maybe it will be different next time.

big hugs - i hope the medical side of things gets sorted very soon for you - you're more important than that promotion, remember!


ele mental leprechaun
Hi DB,

I know where you are coming from. However, I am already doing the job and that is what had me so down yesterday. I am at the top of my pay scale now and can go no further but they expect me to keep doing the job and not have the recognition or financial recompense for it.

Thats what is so galling. There are also politics involved in that 90% of staff dont get the promotion first time round. There were 2 staff in the interviews out of the 5 of us (and only 2 posts) who had been interviewed last time round and were turned down so its also like an unspoken rule. Sigh. Makes me wonder why I put myself through so much! Am contemplating changing jobs once I get myself sorted a bit more and have a longer sickness free period on my record..

On a brighter note I did get my rheumatology app yesterday for July 1st. So another piece in the puzzle hopefully.

Still waiting patiently to hear about the gastro side of things.