Not sure what’s going on...
Hi all
I haven’t posted in forever, mostly because I’ve been doing amazingly well, but I’ve still been lurking and reading all your posts etc. Unfortunately I’m finding myself in a position where I need all of your collective knowledge & advice again!
So I started Infliximab in March, which stabilised me after the 3rd infusion. After the 4th I felt incredible! I honestly didn’t know it was possible to feel so well, and mentally the difference was huge too. I could do ALL of the things, yay [emoji16]! This remained the case even when I was told my job was at risk and after a few weeks it was confirmed I was being made redundant. All the stress that came with that and being unemployed made no difference, and starting a new job in a totally different industry with a lot to learn was also not a problem and I flew through it all. I’m usually someone who’s quite stressy and anxious so all of the above would normally put me in a tailspin!
However about 2 weeks before my 5th infusion, I started to feel a bit tired and run down. 1 week before I started to have pain and mucus again, but I ignored it as I knew I only had to put up with it for a few days. I did feel better once the next infusion was done, but only for about 4-5 weeks, and then I started feeling crappy again. I picked up what I thought was a recurring UTI (although now I’m not so sure) and an eye infection in the 2 weeks immediately before my last infusion, as well as the Crohn’s acting up. I spoke to my IBD nurse who said they would check my blood for antibodies at my infusion.
I had my 6th infusion just over a week ago and I have yet to feel any improvement. I’m now also having bleeding (which was uncommon before) in addition to the mucus, and my appetite has greatly reduced. When I do eat my stomach sounds horrendous and I’ve been very constipated.
If I have developed antibodies to the Infliximab is that it? It’s awful to think I only had that one summer of feeling fantastic as it was so short lived, although I’m obviously grateful for it nonetheless.
My bladder issues are also continuing, but are very inconsistent which is why I’m not convinced I ever had an infection. My IBD nurse asked if it felt like I was passing any air which I’m guessing would suggest a fistula? That’s not the issue so I’m stumped but wondering if it’s still Crohn’s related if my bowel is putting pressure on my bladder or something. I don’t know if that’s possible but it feels like something is!
Grateful for any advice [emoji1695]
Hi all
I haven’t posted in forever, mostly because I’ve been doing amazingly well, but I’ve still been lurking and reading all your posts etc. Unfortunately I’m finding myself in a position where I need all of your collective knowledge & advice again!
So I started Infliximab in March, which stabilised me after the 3rd infusion. After the 4th I felt incredible! I honestly didn’t know it was possible to feel so well, and mentally the difference was huge too. I could do ALL of the things, yay [emoji16]! This remained the case even when I was told my job was at risk and after a few weeks it was confirmed I was being made redundant. All the stress that came with that and being unemployed made no difference, and starting a new job in a totally different industry with a lot to learn was also not a problem and I flew through it all. I’m usually someone who’s quite stressy and anxious so all of the above would normally put me in a tailspin!
However about 2 weeks before my 5th infusion, I started to feel a bit tired and run down. 1 week before I started to have pain and mucus again, but I ignored it as I knew I only had to put up with it for a few days. I did feel better once the next infusion was done, but only for about 4-5 weeks, and then I started feeling crappy again. I picked up what I thought was a recurring UTI (although now I’m not so sure) and an eye infection in the 2 weeks immediately before my last infusion, as well as the Crohn’s acting up. I spoke to my IBD nurse who said they would check my blood for antibodies at my infusion.
I had my 6th infusion just over a week ago and I have yet to feel any improvement. I’m now also having bleeding (which was uncommon before) in addition to the mucus, and my appetite has greatly reduced. When I do eat my stomach sounds horrendous and I’ve been very constipated.
If I have developed antibodies to the Infliximab is that it? It’s awful to think I only had that one summer of feeling fantastic as it was so short lived, although I’m obviously grateful for it nonetheless.
My bladder issues are also continuing, but are very inconsistent which is why I’m not convinced I ever had an infection. My IBD nurse asked if it felt like I was passing any air which I’m guessing would suggest a fistula? That’s not the issue so I’m stumped but wondering if it’s still Crohn’s related if my bowel is putting pressure on my bladder or something. I don’t know if that’s possible but it feels like something is!
Grateful for any advice [emoji1695]