Missed my second dose of Stelara twice now

I'm so annoyed right now I'm thinking of just forgetting about the whole thing. I had the first dose as an infusion in hospital, which went okay apart from them being hours late in delivering it. But subsequent doses are taken as an injection.

I was due my 2nd dose on the 9th September. It's now the 18th. My IBD nurse was supposed to send me a blood test form, which I never got. When I logged into the patient portal site, her name wasn't even listed there, which makes me wonder if she's left. Anyway I spoke to somebody else I didn't know who didn't seem much interested and I still haven't got a form or had a blood test. It wasn't like this with the Entyvio: they would refuse to order it until I had gone in and got a blood test...

Meanwhile I phoned the homecare company whose job it is to deliver the Stelara and arranged a delivery on Monday. Delivery slot between 10am-12pm. Fair enough. I got up at 10am and waited... and waited. Nobody came, or, if they did, they didn't sound the buzzer or doorbell (I live in a block of flats). Phoned up the company only to be told the delivery man had tried to phone me, but there was no answer. Well no - I was expecting a delivery, not a phone call. Exasperating, but agreed to rearranged another delivery for today.

Well I missed it again. The delivery slot was between 8 and 10am this time. Admittedly there was a text with the times sent yesterday evening, but I missed it as my phone didn't send any notification I'd got a text. Since I couldn't sleep last night thanks to a dodgy stomach, I was actually awake between 8-10am and once again nobody rang the buzzer or doorbell that I heard. Missed another phonecall though!

I should add that I wasn't actually expecting the Stelara to arrive as early as 9am. This is because my IBD nurse told me that the drug was made in a laboratory in Bath and had to be transported to my hospital, which is at least 200 miles away. She also made it plain it only had a short lifespan of 7 hours after it was made up. Thinking about it now, she was probably referring to the infusion and not the injectables - I dunno. When I first spoke to her about going on Stelara, she made it sound like I would have to rush to the hospital to collect it every time because of the short lifespan - I remember specifically saying that would be okay. But maybe she was as clueless as I am, who knows.

Anyway, I've just googled it and the shelf life of Stelara is 3 years according to its manufacturer. Oh. (But I was right about the infusion though - it must be used within 8 hours after being diluted.)

Oh yeah. A nurse was meant to pay a visit within 5 working days to show me how to inject Stelara. Has she visited within 5 working days? Is she likely to ever visit? Fortunately I've injected Humira and methotrexate in the past, so pretty sure I can figure out what to do with the Stelara, if I ever get it.

Between the 2nd dose already being well over a week late and the first dose appearing to not make any difference, I've got no hopes left for this drug. I just feel like nothing works for my Crohn's and the only reason I'm not in dire straits is because it has largely left my small bowel alone. The resulting symptoms are miserable, but not life-threatening. A dark and bleak side of me sometimes almost wishes they were.

Hey UB. Thanks for replying. I'll check my emails to see if I got your email.

I emailed one of the IBD nurses - the usual one apparently hasn't left, but is no longer dealing with queries on the patient portal site. Explained everything that had happened and got a bland, fob off answer in reply. I replied extremely briefly and tersely, and left it at that. That was on Friday. Have heard nothing since. I *cannot* be bothered dealing with this anymore and refuse to. I can't contact my GI directly. I would have to go through his secretary and make an appointment to see him, which could take months.

You shouldn’t need an appointment to get this sorted. The secretary should pass on the message and help get this seen to ASAP. You could also send him/her an email. My GI & all my docs have email addresses. They are listed on hospital websites etc. This disease is far too serious for modern day accommodations not to be implemented.

Contacting a patient advocate is also possible.

It’s hard to fight & advocate when you’re fed up. I totally get it. Stelara is worth the fight though & so are you!

Post Edited (U B Tough) : 9/24/2019 6:16:57 AM (GMT-6)

Hey folks.

I'm afraid I still haven't got my Stelara. I never did hear back from either the hospital or delivery company, and I never got in touch with them. I know I'm not acting sensibly, but I cannot deal with chasing things up at the moment. It always ends badly. For example, I've had cystitis for a few weeks, which I've been treating with a combination of CanesOasis sachets and ibuprofen, but it keeps on returning. On top of that, I've had chest pain and nausea for the last 3 nights. So I did the thing I most dreaded this morning and called up my GP practice. There weren't any appointments available - there never are anymore. I couldn't even arrange to get a call back from a duty doctor; I was told to bring in a urine sample. Bear in mind I haven't seen ANY GP, let alone my regular GP, once this year: in just 4 years this practice has gone from being good to unusable. I was so annoyed, I went online and gave it a 1 star review on google. Nobody will see it or care, but it made me feel briefly better. Primary healthcare has been ruined in England now - I don't have any doubt about that.

I also had a bad experience with my counsellor. A few weeks ago I missed an appointment with her. It was a pure accident - I just forgot. To cut a long story short, she alerted the mental health team, who then massively overreacted. Somebody came to my flat and rang the doorbell loads of times. Eventually my mum called me in distress, saying that they had phoned her and said they were going to call the police if I didn't get in touch. Absolutely ridiculous. The whole episode stressed me out and I must admit it was still on my mind when I finally saw the counsellor last week - especially as she herself had left half a dozen messages on my phone. The session did not go well. I was in a bleak and dark mood, and did not feel like talking. She irritated me by copying what I had just said, even to the extent of copying my tone. I *had* indicated I didn't like this in an earlier appointment, but obviously she had forgotten. I snapped at her to stop copying me. She agreed, but seemed to take it personally and got quite defensive. She then spent the rest of the session summarising what I had said and making it a point to demonstrate that she was NOT copying me by changing a word here and there. Which was almost as annoying.

I'm not sure what benefit I'm getting from counselling to be honest. The sessions which have gone well are the ones in which I've been in a better mood, but that seems counterproductive to me: I need the most help when I'm at my lowest ebb. But I don't feel like talking is doing anything for me anymore, if it ever did. I just repeat myself endlessly, because my life and my thoughts are so boring. But I don't feel like I'm getting any insights back - just my own words repeated back to me in various ways, which is completely pointless because I already live in my head 24/7 and nothing I say is news to me. Is this what all counselling is like? I've thought about paying for a few sessions of EDMR, but that apparently works better for one large, single-focus trauma rather than lots and lots of smaller ones spread out over many years.

Anyway, so yeah. Writing this has knackered me out. I'll have to decide what to do about this wretched Stelara. Incidentally, I picked up an interesting leaflet today from a mental health charity. It was about making accommodations for patients with mental illness and had a section on GP surgeries. If ever I have the energy to write a letter of complaint to my GP practice, I may use their recommendations as a basis.

Goodnight folks :p

@Matthew - I saw it! It's my bedtime now (always takes far longer to write a post than I think it's going to), but I will reply tomorrow.

Unless you were threatening suicidal tendencies.....I’m shocked at the outrageous overreaction.

I’m still not understanding why your GI isn’t involved. I totally get being burnt out. Can you mom call? I’d be happy to make phone calls as well.

What’s going on with your heart?

I’m wondering if your uti’s are a side effect of Stelara. The first year I was plagued with uti’s and yeast infections. The uti’s were so bad I thought I’d developed a fistula.

Post Edited (U B Tough) : 10/3/2019 2:23:32 PM (GMT-6)