I just tend to not deal with it very well and only seek advice when I’m in an obvious flare. I’m pretty sure my liver is checked through the blood test I have every 8 weeks at the infusion so I don’t...
Quincy... here in uk, they don’t seem to use rectal meds much, I also hate them. I’ve tried salofalk which are foam enemas with meSalamine in but give me awful stomach cramps. I get on ok with...
Hi everyone, It’s been a while since I posted on here... I got diagnosed with uc 3 years ago. The first 1.5 years were pretty awful- got stuck on pred for 8 months with severe side effects, couldn’t...
I’ve tried anusol cream (not sure if you have that in us) and also diltiazem cream. Also just got lidocaine gel....
Thanks q. Yep it’s driving me insane how rubbish they’re being. Think it’s due to COVID. Just telling me to buy meds from chemist but I don’t even know exactly what the problem is...
Thanks! I have some steroid enemas... maybe I could use those? Unfortunately both my dr and ibd nurse are being useless...
Hi everyone, I’ve posted before about this... I’m having a total nightmare with rectal pain/symptoms which just don’t seem to be budging. I had my baby daughter by elective c section 13 weeks ago and...
Your post really resonated with me so I wanted to reply. I also struggle with this big time. I’ve had up just over 2 years and it has been a struggle to get it under control and even when it is...
Thanks both for your replies. Yes straydog I became constipated after having my baby daughter probably due to codeine I was taking and lack of fruit and veg... Right now I am having a bm once every...
Update... Still been having the intense cutting type pain and then last weekend saw blood for the first time, only on toilet paper and on tip of stool. I was sure this was an anal fissure but then a...
Hard to say, my first flare that lead to diagnosis was long and drawn out, started with increased cramps and looser stools before seeing blood few months later. When I flare I tend to start getting...
Thank you both. I don’t think I have rectal pain, like I can feel a specific sore spot which maybe just slightly internal... which started when I was constipated and it hurt really bad to go. Today I...
Hi everyone, I gave birth to my daughter by elective c section 4.5 weeks ago. I managed to stay on remicade the entire pregnancy (had my last infusion at 38 weeks, had c section at 39 weeks) and have...
Thanks. Yeah i had blood work done when i had my infusion, they don’t routinely tell me results unless there’s an issue so asI haven’t heard I’m pretty sure CRP etc would be fine. Unless I’m in a...
Just an update... had my 6th remicade 10 days ago and things haven’t really changed although I’ve notice past few days that stool seems to be harder and I’ve been having soreness when I go... not...
Thanks Susie, I think you’ve hit the nail on the head - I definitely need to somehow stop obsessing over small details! And yes you remember correctly - I’m near London. I think they can also...
Thanks, it’s so hard to know what is causing what. I mean I think I have responded to Remi well and I don’t know whether it’s just my paranoid self letting doubts creep in......
Hi everyone, So I’ve been on 5mg/kg of remicade since beginning of February after being on humira the previous April - December. Humira worked pretty well - got me to the point of having normal FCP...
Susie, I’m in the UK and they just say there’s not enough data about safety in 3rd trimester so won’t give it to me as apparently it crosses the placenta so my baby will be somewhat immunosuppressed...
Hi everyone, Just wondering if anyone has any experiences of remicade during pregnancy? I’m 22 weeks with my first baby and have just had my 5th infusion and being told I now cant have anymore until...
Thanks flowersgal. Yes I believe it’s the same as they’re both budesonide. Thanks for the advice. I’ll try it but think I only have 2 weeks supply. I actually had 8 weeks between infusions 3 and 4...
Thanks everyone. I'm in the UK and for some reason it takes 6/7 weeks to get the results... I had it done over 2 weeks ago already. Bit of a joke really. I might just about find about before my next...
Hi all, So some of you will have probably read some of my previous posts... but yeah basically started remicade in feb after humira started to lose effectiveness and had my 4th infusion 2 weeks ago....
Well it seems like I’m going into some sort of flare :( still 2 weeks until my next infusion. Honestly so sick of this damn disease... no clue what to do...
Ipoop pain is mostly mild... Not really cramping just more like I would describe as irritation or bloated/gas/discomfort. Sometimes, I will get a random urge to go... Not terrible and it goes away...
CCinPA thanks . Yes I’m due to get my levels checked just before they do my next infusion which is 3 weeks today. Annoyingly here in the uk it takes 6-7 weeks to get the results... and may take even...
Hi all, Hope everyone is well and keeping safe in these strange and scary times. So, I’m getting a bit irritated with my UC. I was diagnosed in November ‘18 and in that time have been on pred for 7...
Hi everyone, So i found out 2 days ago I’m pregnant which was a huge shock! It’s early days obviously but I’m just wondering if there’s anyone on here who’s been through pregnancy with uc and how...
Thanks Quincy. I’m not on any rectal meds... unfortunately I can’t get on with the mesalamine rectals (I had salofalk for am which was awful!) and here in UK, they don’t seem to make a big deal of...
Hi Sara, yes so would I! Well my fcp was 100 whereas it had been 40 so they thought i was headed in wrong direction and I was getting cramping again in the morning ... but yeah my trouble with...
Thanks for the advice -I definitely don't drink enough so that’s a good suggestion. Sorry probably being dumb but what counts as soluble fibre? Yes I’m glad but wondering how long it will last since...
Hi all, So I’ve been on remicade 3.5 weeks (had 1st and 2nd loading doses) and due my 3rd and final loading dose in 2.5 weeks. Before I went on remicade I had been on humira and am still on 6mp and...
Thanks John, can I ask what were the signs you had it was working? Trouble is for me I'm not on steroids right now and my main symptom is cramping /discomfort when I wake up... I'm not bleeding and...
Thanks. At the moment I’m not on any steroids, I’m not bleeding but having more pain and needing toilet etc... sigh. How are things with you?...
Hi all, I’m feeling a little negative recently. I had my first remicade infusion 2 weeks ago and due my next one tomorrow. Can’t say I’ve seen much improvement and feeling pretty rubbish today. I’m...
Hi Sara, just want to say we are in a pretty similar position albeit I was on humira a lot longer than you. My trough levels are good, I have very low levels of antibodies but i’ve never been in a...
Yep it’s pretty bad. I saw another doctor yesterday but still wouldn’t prescribe anything without speaking to my specialist... so I’m waiting for them to get in touch. In the meantime I’m waking up...
Thanks Sara, so they wouldn’t prescribe me uceris or the uk equivalent said could only give me a 5 day course of pred...so that was helpful. I feel like they dont want me to have humira maybe because...
Thanks guys. Well I’m in the uk so here it’s just a question of waiting in the nhs. I waited 8 weeks for humira but they had to apply for funding for the first time. He said should take 3 weeks now...
Hi all, Following in from my previous thread, I’m now certain I’m flaring again and I don’t know what to do. For those of you who haven’t read my threads, I was diagnosed with moderate left sided uc...
Thanks everyone. Unfortunately both ibd nurses left so they are seriously understaffed. However yesterday night a consultant dud phone me (not my one) and basically told me lies about what had...
So I found out yesterday that my consultant has taken me off humira without telling me! I spoke to him last week where he indicated I had developed low levels of antibodies and said he wasn’t sure...
I'm not sure if it's the same as I'm in UK but I use budenofalk enemas which are a budesonide foam - is that the same as uceris? If so, I found them to be pretty effective at stopping bleeding. They...
Brilliant. Glad you're well :)...
Glad to hear you're well. Is that on remicade? Thanks I will try to do that....
Thanks John, I’m really not sure why my GI isn’t just upping the dose or making me try it weekly - surely it’s worth a shot? Instead I’m just stuck waiting for him to get back to me... I don’t think...
Thanks for the advice. I will do it as normal on Friday. Just worried no point if I have antibodies?...
Thanks for your reply. Yes test checked both levels and antibodies. He said levels were good but low levels of antibodies showing... He just said he didn't know what to do and has to speak to his...
I just started the budenofalk enemas, I don't tolerate mesalazine enemas. I just spoke to my consultant who said I've developed low levels of antibodies to humira after only 7months :( I literally...
Thanks everyone for your replies. I was so hoping this was just a constipation issue but sadly I think it's a flare. Last night I had a loose-ish bm and I thought there was blood in the toilet...