Stelara here I come!

Glad you are seeing some positive effects! I had a small response initially, so my doctor increased me to monthly injections and that made a huge difference!! I am now in remission, after almost two years on Stelara (knocking on wood), and a year and a half on monthly injections. It is a total PITA insurance-wise. My poor doctor's team has had to twice go through a denial and appeal. Both times it was approved, thankfully, because I am refractory for everything else.

That is great news, Rusty!!

Another tip for anyone reading this and they’re about to go on Stelara.
Immediately after my infusion I ordered the syringe from my insurance….Accredo.
It has to be refrigerated at a certain temperature range. I am a bit OCD. (BTW. I have read OCD people are more like to get IBD. True? Maybe).

Anyway. I got the syringe right away from Accredo, even though I’m not scheduled to inject until 8 weeks after my infusion, and then every 8 weeks after.

Next time, I will wait, and order my syringe about 2-1/2 weeks before my due date to inject. A delivery cushion, but not a ridiculously long one. Not needed.

Because what has happened is, I’m checking the temperature in my refrigerator at least once a day to make sure the drug is being kept in the correct temperature range!

I know I’m a bit nuts. Dah! Sigh.

Next time I’ll only have to do this for, say, 2 weeks, and not 7-1/2!

Rusty,

I would do the same thing. That's just being smart and cautious. You're on a learning curve. Try not to be too hard on yourself.

Clo

Update. My initial infusion was January 17 2023.

Seems like every other night I am now sleeping through the night without having to poop. I’m attributing this to my eating patterns.

Occasionally I have had a day here and there since my infusion where I am going more than a few times during the day. But again, I’m attributing this to what I eat.

So, bottom line, so far, so good. On average, the past few weeks, 2 or 3 movements each morning. Usually stools. Occiassional chunky mush. And that’s it for the balance of the day.

Why do I have 2 or 3 each morning within a few hours? Not exactly sure. I’ve always had an issue of completely emptying my bowels, this goes all the way back to my earliest days of UC. Just part of me and this IBD. I’ve read this is common. Don’t know.

GI wants me to start tapering off the 9 mg a day of budesonide soon after my first injection. I’m concerned about this. Hate to rock the boat. But for now I’m going to try and enjoy the current ride, stay positive, and I’ll deal with that when I get there.

UCyousee said...
Good luck Rusty Barr! I hope you have the same success with Stelara that I've had. I've been in remission for about 17 months now, and long may it last!

It means I've been able to live life to the full for a while.

Rusty Barr said...
How long were you on the Stelara until you were in remission? Since you started it, did you take anything in addition to it? …and can you describe in detail what remission means for you? I’ve read many different definitions here of remission. Thanks so much.

I got the initial dose infusion on 1/17/23. Right now I’m happy with where I am at, but I know I could see even more improvement.

My current daily pattern is 1 movement urge, waking me up in the middle of the night, typically around 1 am, which is usually stools….then I go right back to bed and right back to sleep. Then a movement upon waking up first thing in the morning, also stools. Then another movement or 2 within an hour or two after that, that is usually chunky or loose or watery. Then another movement later in the late afternoon or the early evening and this is usually chunky or mush.

That’s still a total of 4 or 5 overall each day, but, The fantastic thing is urgency is almost zero…meaning I can hold it when I feel the urge and I’m not sprinting to a toilet. That is absolutely huge for me.

Hi Rusty Barr,

Sorry, I've just seen this post, as I'm currently travelling in South America. That's what remission means for me - total freedom to live my life in the same way that people without UC do! Thanks to Stelara, at the moment I'm able to travel without any restrictions. I don't need to worry about where the nearest toilet is.

My faecal calprotectin is completely normal (under 50 at the moment - it's in the thousands when I'm ill), and I have no diarhhoea, blood, pus or urgency.

My bowel movements are generally normal (normal for me) in that I have one bm in the morning (although they're a bit loser than usual at the moment, probably due to the heat, change of diet etc, while I'm travelling),

Without looking back at medical notes (which I don't have with me at the moment) I'm afraid I can't remember how long it took for the Stelara to get me into remission.

I currently just take a Stelara injection once every 3 months, and mezavant (mesalazine) when I remember to take it. I haven't needed any steroids or enemas since I went into remission about 18 months ago .

I really hope you get to the point where you can live your life without thinking about UC, at least for a few years. After many years living half a life it's incredible to 'have my life back'. I just hope it lasts a good few years before I need to start looking for the next drug.

Post Edited (UCyousee) : 3/1/2023 6:07:46 PM (GMT-8)

Rusty, even in remission i often poop 2-4 times in the morning in close succession. But without urgency so it doesn't really interfere with my daily life. Only i have to plan more time for getting ready in the morning. I eat a lot of fibre and drink (non alcoholic drinks) a lot which definitely influences my bowel habits.

I usually go once or twice a day since being on Xeljanz. I'm vegan and eat a lot of fiber most days. My stools are almost always mushy since UC. I always wondered if my mesalamine did that. I'm down from 12 pills of that a day to 6 now, so I guess I'll see if that changes at all once off it. Before UC, I had constipation quite a bit, but I think most of that was poor diet.

I often wondered if I have scar tissue too. Sometimes my stools are very narrow but other times not. No one has ever mentioned it after a scope. Not sure if that's something they could see or if they'd note it.

Yeah, this is the place where I got the scar tissue idea from. Unclear if anyone's doctor had ever said this though. Would be interested in reading if this is actually a thing.

Interesting! Thanks for sharing. Hope you're doing ok.