Gonna be starting Stelara (long post warning)

Had an appointment with my GI today. It began with a terrible drive to the hospital, where I was cranked to the max. Stuck behind slowcoaches almost the whole way there, with no way of overtaking. I used to enjoy driving, but I don't anymore. There's too much traffic everywhere you go, no matter the time of day.

Sometimes after a bad drive I manage to de-stress during the walk to the hospital (I park further away in a free car park and walk about half a mile to the hospital), but today the bad feelings lingered and I felt seriously depressed and demotivated. I thought about how fed up I was with medical treatments and wondered about just stopping all the meds I was on. Then I remembered trying that in that past. Spoilers: it didn't go well.

Got into the consulting room and one of the first things my GI asked me was how was I doing? I hesitated before saying unconvincingly, "okay"; he was asking me generally how I was. The more honest answer would have been "dreadful", but, I don't know, a mixture of pride and fear that I would start crying kept me from saying that. There wasn't that much to say about the Crohn's, as it hasn't really changed this year - it's been pretty stable on a day to day basis. Boring, but stable.

Told my GI about the uveitis and the endless problems I've had with that. He said that vedolizumab wouldn't work outside the bowel, but Stelara (he used its generic name, but I'm not messing around with trying to spell that right now) might do, as - like Remicade, etc. - it was systemic.

I can't tell if the vedolizumab is working or not, and I told my GI that. The only thing that I think has improved is the urgency: I'm making far fewer mad dashes to the tolet of an evening. But otherwise I'm still going about 8x a day, and I still get pain/discomfort in the lower right stomach. The butt burn is real too. I got prescribed chlolestyramine for the bile diarrhoea, which I definitely will give a go.

Also gonna be booked in for a pelvic MRI. Bit surprised, as I thought a pill cam or sigmiodoscopy would have been more the obvious route to go. Not convinced a pelvic MRI is gonna find a lot, tbh. On the other hand I have come to absolutely dread flex sigs (the last two have been so painful, even with twilight sedation!), so I didn't query it. He also considered a proctogram, but said he wouldn't subject me to such a humiliating test. I said in response there wasn't a Crohn's test that *wasn't* humiliating <_<.

(Incidentally I just googled proctogram. Makes more sense now that my GI considered it, 'cos I said I had trouble with emptying my bowels. I think, though, that's probably just proctitis and not anything worse, like a stricture or fistula :/)

I was asked if I wanted to try Stelara; I said yes. It's the last med I have left to try. There is literally nothing left after that. I can't honestly say I'm wildly optimistic and in fact I left the appointment in a state of deep depression. That was nothing to do with my GI - he's as pleasant and as good a doctor as you could hope for, really, and I was lucky to find him. But I'm just so tired of it all, and I'm not gonna get any healthier as I get older. I also never have anyone to go with me to hospital; my mum used to accompany me sometimes but once I moved out, she stopped doing that. And there is nobody else to go with. I feel like a ghost sometimes, I spend so much time on my own.

On top of that, I'm so worried about the future. I'm in a constant state of anxiety about everything. I think the UK is heading towards a bad place; in fact it absolutely is. It's just a question now of how bad will 'bad' get. I don't know. But I regard the future with a feeling of sick dread. I have been lucky up until now: I've got a nice flat and I've received free excellent healthcare: I appreciate the people who have helped me along the way. But everything is changing, and all for the worse, not the better. And there are certain changes (such as sweeping changes to the benefit system) which I absolutely will not be able to avoid.

Sorry, this is going way off topic now. But this is the sort of stuff which keeps me numb with paralysing anxiety. I'm positive it doesn't do my Crohn's, or physical health in general any good, but at this stage I can no more stop worrying than I can stop breathing.

Er... thanks for reading folks :-/

hey NCOT, I hear you! I think I will be right behind you (not literally,lol) in that Mayo has ordered another abdominal CT scan and another colonoscopy. if anything is active, then I will be trying stelera. I already increased the frequency of the entyvio because it was not staying with me-they did the serum level tests, and the gi said when that starts they have found entyvio really is not helpful.

sounds like you have a good GI. sometimes I find having a caring doctor helps a lot

we are here for you!

Everything I'm reading about Stelera seems to be positive. I would say, it's rivaling Remicade as the most effective biologic. Who knows, maybe in time it will prove to be better. After the much touted Entyvio, which seems to not be well received at all, Stelera has been a very pleasant surprise for Crohn's patients. Hope it works well for you, and keep us posted.

You are brave NCOT. You are so candid about what you are going through and despite all of that you are always posting great in depth insights for so many of us on this forum. I hope that Stelera proves to be if not a wonder drug than a good enough drug! Sending healing thoughts your way...🌈

Thanks folks!

I took a mini break, but I'm back now >.> Watched the original Blade Runner as a prelude to the new Blade Runner film, which I went to see with my mum at an Imax cinema. (Spoilers: the original BR is better.) And yesterday, I had a psychology appointment which went quite well: I agreed to start duloxetine (Cymbalta) again in return for a referral to psychological services. Also gonna do a couple of other things, like go and look at a daycare centre for adults with mental health problems. They do various activities things during the day and have a painting and drawing class on Fridays, which I'm tentatively interested in.

@Ides - it's great to hear you can eat lots of fibre again! If Stelara works that well for me, I would definitely consider it a success. As a child it would have been my dream to have a medical reason for avoiding fruits and veggies, but now I wish I could properly chow down on salads, etc.

@73monte - Entyvio seems to be better for UC than Crohn's - I think that's been shown by studies as well, but not 100% sure of that. I would have to check, and I'm too lazy to do that right now. Regardless, I've heard good things about Stelara and I like the fact it's systemic as well - I feel like systemic drugs work better than local ones. (That's true of steroids at least.)

@nssg - I'm hoping it will help the uveitis as well: I can't get off the steroid drops! Have reduced the drops to twice a day, but any less than that and the redness/pain starts to come back.

Ha, I use a supermarket car park. Luckily for me, it's just far enough away that most people wouldn't consider using it for the hospital. It's about 15-minute walk, which at first I found a bit of a drag but I've got used to it now. In fact it probably saves times, as you can get stuck in heavy traffic on that stretch of road just before the hospital - and then you've still got to find a free space, which can take forever.

Yeah, your healthcare system really, really, really sucks, I'm not going to deny it, I'm sorry. One of my biggest fears is our NHS being sold out to your US healthcare companies: there are ideologically motivated, state-hating Tories in the UK who would do that tomorrow if they could and, if Brexit goes their way, will be able to do so. I mean, out of all the healthcare systems in the world to copy, you would have to be a sociopath to pick the US one - again, I'm sorry, but this is too important for me to mince my words here.

Gah! Well, now I've succeeded in depressing myself all over again :-/

At any rate, I'm gonna go on Stelara while I still can and just hope it works!

@Betty Sue - Thanks!

@gumby - I couldn't remember, so I looked up local Crohn's & colitis support groups. There's nothing very local, but there's about 3 or 4 of them I could get to by car. But none of them seem to be very active, to put it mildly. There are one or two sporadic social events, but none of the groups seem to meet up on a social basis regularly. And 90% of it is about about fund-raising, which doesn't interest me. (I'd rather donate money to researchers directly, so that I know that most of the money isn't going on salaries and "raising awareness" campaigns.)

I'm sorry about your book club. It really ruins social events when you can't eat and drink like normal people do Sometimes I say "sod it" and go for broke, but not nearly as often as I used to - partly because I get less opportunity to but also because to me it's not worth it most of the time: the feeling like sh!t lasts far longer than the feeling good.

Urgh, I'm feeling so tired now. Lunch has reached my lower bowels and is duking it out with them in a fractious and uncomfortable passing through.

Ncot I know your story too well and I feel for you. Please consider an exercise program. As you know I started last year and it changed my life. Others that have tried it have had equal successl. Some I know are now off all meds and are disease free and I am headed that way also.

Hi folks.

I haven't been on HW much for the past few days, because I re-started my antidepressant and, even at a lower dose, it's been kicking my arse. I don't entirely like the effects of being on it, but it has, for now at least, stabilised my moods and flattened them out. Trouble is, I also find it a bit harder to think.

I'm having my pelvic MRI next Friday. As much as I loathe sigmoidoscopies I do wonder if that would have been a better choice than an MRI - I don't know.

@DDCrohn's - Good luck with Stelara. I hope it works!

@Matthew Sawrie - We had this discussion once before. While I'm glad you're feeling better, there's just no way that exercise can cure Crohn's. Anyway, I will get back to the gym again - I hope :/

@gumby - That's a shame about the support group. You did a good thing by helping out though - it was just a shame it couldn't get enough impetus going. Maybe if somebody tried again, it would get off the ground this time.

Hope you have fun with the choir. I went to the daycare centre place a couple of days ago. Funnily enough, there was a music group in session at the time and I was invited, but I turned it down saying I couldn't sing :/ They said it didn't matter, so maybe I will reconsider it. At any rate I've put myself forward for the art class at least.

I don't know anyone but the rich manages in your healthcare system. It's insane how expensive everything is!

Thanks, and same to you. Hope you have a good weekend :p

Hi NCOT,
Nice to see you back online. I'm glad you signed up for the art class and I hope it's enjoyable. Most antidepressants take a few weeks for the side effects to wear off and for them to work, so don't lose hope. I hope the Stelara is the drug for you too.
I had a couple of bad days this week where I was beyond exhausted and had trouble concentrating at work. I also have mucous in my throat but no other cold symptoms....I'm trying Prilosec to see if it's GERD. My bowels are not any worse than normal though. I made an appointment with my PCP for next Friday. I thought I'd start there because I don't know if the elevated WBC's were really Crohn's related or something else and I don't want to get stool studies if I'm not having D since the test is so expensive. I also got a B-12 shot and started using Vitamin D lotion that I got off Amazon that has 10,000 IU per pump. The oral Vitamin D and B-12 never seems to raise my levels at all, and I even tried the sublingual liquid. Maybe I'll just magically get better.....a girl can hope

Yeah, the Vitamin D stuff is skin lotion. Here's the link: https://smile.amazon.com/gp/product/B00454A1HE/ref=oh_aui_detailpage_o04_s00?ie=UTF8&th=1

I'll ask my doc about it when I go. Prilosec is OTC here....maybe I'll stay with it another week and see if it helps. I slept 11 hours last night! Normally I sleep around 7. We'll see if that helps!

Have a great week!

I have a question regarding STELARA to anyone and everyone.

I have a narrowing of my J-Pouch from my small bowel to my pouch and from my pouch to my anus.

I have been told that narrowing doesn't always respond to the medication.

Any one else have information on that?