No Canula; No Infusion

[Tommy21bn]

It's as simple as the title sugests. Despite warning the Infusion Unit that I would require someone from the hospitals' I.V.Team to canulate me no-one was available. This was to be my first infusion of Infliximab and now I am left with pain and disappointment. The NHS is wonderful but it never appreciates the true cost of crohnic diseases. It's not the pain and sickness but the time that it takes to get these things resolved. Often they are simple things to fix with readily available medicines. There are just simply not the resources to deliver these treatments in a timely fashion.

So here I am with no canula and no plan as to when I can return to the Unit to have someone from the I.V. Team place a canula and begin the infusions.

Frustration does not even begin to cover my feelings.

 

[ronroush7]

I am sorry. They should have planned better.

 

[valleysangel92]

I feel for you, I have horrible veins and am on Vedolizumab (entyvio) which is the next drug on from the anti TNFs. It's an infusion just like infliximab and they always struggle getting a cannula in. The nurses in the department think I should be on self inject, but my consultant says humira is too risky because i had a reaction to inflectra (even though lots of people have gone onto humira with no problems) .

If this continues to happen to you, it could be worth asking if humira is an option for you, its a self inject medication so there's no cannula and once you've been taught how to do it you can do it yourself at home so its a lot more convenient .

I personally have anything from 2 - 8 attempts each time I go, and the nurses are concerned about long term damage to my veins, but as my consultant won't budge on the Humira issue, there's nothing we can do until Stelera becomes available.

 

[Pug Gamer]

Im not on injectables yet but i had this conversation with my IBD nurse as i have awful veins. She said it would definitely be better to start me on home injectables then as its hit and miss getting someone good enough on the day to find a vein. I totally feel your frustration, and i hope you could get better service from now on.

 

[Tommy21bn]

Well after 8 attempts they managed to find a vein. This promptly blew and the Infliximab ended up in the soft tissue around the Cannula site. Another was placed and this failed with just a flush being put through it. They are now discussing using a PICC Line. I have mixed feelings as the previous ones i've had placed have become rapidly infected and i'm already running a temperature.

I'm beginning to feel angry and resentful about the situation. It's been 2 years of faiked treatments and now I have to endure a PICC Line just to have another treatment that could easily fail. I hope my Consultant is able to come up with a plan that will finally end all this and I can return to work and independence.

P.S. I have already tried Humira. It worked for a short while and then failed. It's a shame as an inject and go system works really well.

 

[valleysangel92]

I can completely understand, I was diagnosed at 19, after almost 5 years of not being listened to, and I'm now 24 and still trying to find the correct treatment even after having surgery. I've been on the vedolizumab about 16-17 weeks and still not noticing a massive amount of difference. So I really do understand the frustration, especially with the failed treatment and the pain of blow veins and tissuing as I get both of those one a regular basis even with just trying to get some fluids in etc. It's difficult I know. I've never been offered a PICC line. I have asked about them but have always been told they're not for people "like me" and are only for cancer patients or those needing TPN etc. I know that they are used for things like infliximab etc as I've seen it on here, but it's not available to me.

It's no consolation but I want you to know that you arent alone and the way you are feeling is totally understandable and normal. It's really horrible going from treatment to treatment with no reall improvement, but hold tight. My IBD nurse has told me there are a wide number of treatments currently going through trials etc, some of which should be available within the next few years. This includes a biologic that comes in a tablet form, which could be perfect for people in our situation.

There's also stelera which is currently going through NICE and should be available more widely by the end of this year. This is one infusion and then it's all injections and I'm told it has really really good results in trials and in the few people that have been given it off license. So I know it's tough, but things are happening and there will be an answer for us.

 

[eleanor_rigby]

there's nothing we can do until Stelera becomes available.

It was my understanding that stelera has been approved for Crohn's in the U.K. And is available?

 

[valleysangel92]

It is available off license at the moment (mostly in England) but you have to make a special case to the health board. I only know of one person in Wales on it (which is where I am) as our rules are different to England. It's been approved for use in crohns, and is going through the final stages of NICE approval so the guidelines are being set up for when to give it etc, and it should be fully available (so no harder to get than the other meds) by the end of the year. This is what my IBD nurse has told me.

 

[littlemissh]

I am going to start ustekinumab as soon as possible. St Marks, London have 3 pts on it which were granted on compassionate grounds as part of a trial I have been told that now NICE have approved it, it should be available in July. It is a bit of a last ditch for me, so hope it works.

As far as cannulas go, I had the same problem, up to 15 attempts. So I had a port placed, less infection risk and also you can access it yourself which is better because I ws obsessive about correct technique. I had t replaced as now on TPN so had a Hickman line put in though that is just for TPN so had a PICC placed. I have had no infections in my Hickman as I alone access it whereas my PICC has had an infection...this is accessed by nurses....I now an much more brave and tell them when they do it working and hoping it will not get infected again.

It is so much easier to have transfusions etc with a central line of some sort. But go for one you can access and it will be a lot safer.

 

[eleanor_rigby]

Yes this is correct, sorry for any confusion caused! Hopefully it will get the nod soon.

 

[GI Jane]

Ya I have those tiny veins too. I'm always so excited when they have those vein finders. My husband has started my IV a couple times as he was a life flight paramedic and could hit it no matter what condition. I've been bruised from my wrist to shoulder on hospital stays. Blown veins are common too and now I know to tell when it burns which I didn't before.