Annoyed with my IBD team

I'm so glad that you are doing better. The hospital stay sounds awful. I have to commend you.... When I am in the hospital on IV steroids it's all I can do not to grab a broom and fly around the building cursing everyone and everything. Total witch...

Remember to use a slow taper and to try to be patient. When you've had that much damage internally, well I think that it must take longer for you to heal.

Hang in there!
Clo

4 months and at that point I was still going up to 4x a day. In fact I didn't believe I was in remission, but we did a sigmoidoscopy unsedated and I saw it with my own eyes. That's why number of bowel movements is not necessarily the best indicator - more relevant is how urgently you need to go.

@poopydoop, thankfully my urgency has gone now. Even if i feel i need to go, I can hold it and that’s been a few weeks of that.


@sara, Honestly pred hasn’t got me well this time. In fact, I don’t think it’s barely doing anything as I’m also getting better tapering. I wasn’t improving or getting any better on IV in the hospital. I certainly wasn’t getting any response before hospital on the tablet Pred, hence why it got out of control. The moment we switched me to Xeljanz in hospital, I have improved significantly week by week where now I’m almost in remission on 3 weeks with Xeljanz. Today for instance I have only been once in morning ( fully formed ) and it’s now evening here in the UK so seems like I’m nearly there now.

Post Edited (Tblock1985) : 6/14/2023 7:48:49 AM (GMT-8)

Tblock1985 said...
@poopydoop, thankfully my urgency has gone now. Even if i feel i need to go, I can hold it and that’s been a few weeks of that.


@sara, Honestly pred hasn’t got me well this time. In fact, I don’t think it’s barely doing anything as I’m also getting better tapering. I wasn’t improving or getting any better on IV in the hospital. I certainly wasn’t getting any response before hospital on the tablet Pred, hence why it got out of control. The moment we switched me to Xeljanz in hospital, I have improved significantly week by week where now I’m almost in remission on 3 weeks with Xeljanz. Today for instance I have only been once in morning ( fully formed ) and it’s now evening here in the UK so seems like I’m nearly there now.

Yeah, I actually thought about that for you when I responded. I couldn't remember if the pred ever ended up helping or not. That's really good then. You should keep improving hopefully over the next month.

Thanks for the positive feedback guys. Have had 3 days in row of full solid remission style stools. Going my normal 1/2 times a day now so I think I’m there now guys. I know my UC and it’s usually a sign i have finally reached remission. Took me just over 3 weeks on Xeljanz to reach it and considering i was hospitalised its very fast. Don’t think the tapering will make any difference as IV or the Pred has done nothing to combat this flare in or out of hospital. Was the Xeljanz that turned me. Let’s hope for long term remission again like i had with Infliximab. Usually if I’m on some sort of maintenance therapy, I usually achieve long term remission so fingers crossed

For me i find when i been in a bad flare it takes me a long time to achieve it, especially if i have been hospitalised. But, once i get there and if I’m on the right maintenance medication combating it, i usually achieve remission for years

Charlie789 said...
that is a good story

do people find it the case that getting to remission is much much harder than staying in remission? seems to be the case with so many i read about here,,,wonder ,why that is

Charlie, I am one who finds it harder to get to remission. Once I am in a good solid remission, I (thus far in my UC journey) find it easier to stay in it. My theory is, while I am struggling to get to remission, even when things are starting to look good, the state of my bowels are still quite fragile so anything (like what exactly, I don't know) can tip things to the flare side. When I am in the midst of remission, things are less fragile and can withstand... a bit of whatever.

That's quite an unscientific explanation. But as an example, I don't consume things I know are hard on my digestive system- such as alcohol and raw vegetables - when I am in a flare. It can exacerbate the symptoms I am experiencing. But in a good solid remission, I eat raw vegetables daily, and can consume alcohol occasionally.

In my mind, I think of it like a rash on my face. When there are open wounds, you wouldn't want anything to touch your skin at all. Not even a soft cloth. As it heals over, you can brush it with a soft cloth, or maybe some healing lotion, but you wouldn't use a sugar scrub or even scratch an itch with your fingers or the scabs will open and bleed again and you have to wait for it to heal over again. When it is completely healed? You can scratch, you can scrub, all is good!

Update - 5 days in row of full solid normal stools. 2 x day normal consistency. No UC symptoms finally. Took me roughly 3.5 weeks on Xeljanz to get there, but 100% was Xeljanz in hospital that turned me as the IV steroids and tablets we’re doing nothing. Tapering slowly now on pred weekly by 5MG as per Dr instructions. 30 MG tomorrow, so finally getting off it soon. Feels great to be in remission after such a horrendous hospitalisation. Hopefully i can stay in remission long term like i was with the Infliximab before my stupid IBD team decided to take me off it. I will be having strong words with my Dr about it never happening like that again and have already got a complaint filed to the NHS.

They started you on the higher dose right...10 mg twice a day? Generally, you drop down to 5 mg twice a day a few months in (I can't remember, but i think it's usually after 4 months). It's a great medicine.

That's great. Yes, that's correct. I just didn't trust your doctors after all this so I wanted to check, haha.

I'm not really sure, but I think it might have a little better safety profile.

Everything still going well guys. On 10MG pred now so only got a few weeks left then off that. Been in full solid remission about a month now so here’s hoping the Xeljanz keeps me there long term like the other maintenance medication’s have previously for me. Feels good to have my life back although I can’t stop bloody eating lol

Glad to be reading this!!