Resection surgery V Infliximab

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Hi, I've never posted before so hoping I'm doing it right! 😳 I'm very nearly 40 and was finally diagnosed with Crohns in my small bowel in December 2012 but have had symptoms since 2005!! I've been on Azathioprine and steroids since I was diagnosed with added complications of uveitis and an anal fistula (neither very pleasant!) The meds are not working at all and I've now been given the option of resection surgery or infliximab infusions. I am interested to hear any advice you can give me to help me decide. I've have been in a flare up without remission for far too long and I'm fed up of being in pain and I'm knackered...and want to feel better as soon as I can. Could anyone help me with my decision please? Thanks 😄

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  • Posted

    I'm 38 and have had uc for 7years. I've been having infliximab since last July. It has been fantastic up until my last dose 3weeks ago,where for some reason I've reacted to it and have felt very ill ever since, with flu like

    symptoms, shivers fevers and pains, I had the treatment put through in an hour ??whether this caused me to feel so unwell. GP said not to have again but nurse said the opposite. Knowing how well you can feel after it I would say have the infliximab

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  • Posted

    Thank you for your advice Clare. That's so reassuring that you felt so much better afterwards. I am leaning more towards infliximab to be honest but one other question I have is that do you start to feel unwell again when your infusion is due? I've heard mixed feelings on that too.

    It's a shame you've not had such a good reaction on your last one. Is it because it went through too quickly? Ive heard you have more chance of a reaction that way. One thing I have learned about IBD...there is no definitive answer to anything. Drives me crazy!! 😄

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  • Posted

    I only joined this forum earlier today, and funnily enough I took azathioprine last year and got so ill, it gave me hepatitis ! After my infusion 3 weeks ago the nurse put me back on aza again on a much smaller dose to see if it would work as she wants to wean me off infliximab, again my liver function rose and after only 2 weeks

    I've had to stop it. It seems a never ending battle!

    I wish I'd heard about the possibility of a reaction from it going through to quickly because I'm absolutely

    gutted! But I do think it must be because of that as I've never reacted before and will be very apprehensive of having it again.

    In my personal experience I wouldn't say that I have ever felt unwell in the lead up to the next infusion, just

    tired more than anything but I do notice that at work I feel weaker etc.

    Do you talk to many people with your condition?

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  • Posted

    Hiya. I'm far from being an expert in infusions but I follow 'Inflamed & Untamed', (you've probably heard of it) it's a blog run by an American girl called Sara Ringer. She has quite a few videos on YouTube where she talks about Crohns & UC. I'm sure that's where I got the info about infusions and the time it takes to go through. She's been my main source of info as I've really struggled with soooo many questions & feels like no-one to ask sometimes! I have a fab nurse but I still think it's hard to get answers. I've got a couple of colleagues who listen to me moan; one who had an ileostomy 9yrs ago from UC and the other had resection surgery 16yrs ago with Crohns & has had no symptoms since! I'm lucky that they understand how I feel, but my friends and family aren't really sure what to do or say to me. My partner is amazing though, I couldn't have got to this stage without him-he's been to every appointment and every procedure...and he's the one who dishes out my drugs every day & fills my hot water bottle every night,.

    I'm still working full time with a teenage son...I'm so tired & fed up of feeling unwell.

    How have your friends and family reacted to your illness? Have you had many complications? I didn't realise how much it affects everyday life; my knees & hips groan like I'm 90, my eye packs up every now & then without warning with uveitis and I'm so sick of being a picky eater I daren't go out to eat anymore!!! I can't remember the last time I went out at night. I'm soooo boring these days, lol!!!

    If you've had the reaction to infliximab, is there an alternative? Can you take Humira? I was offered that as an alternative but I didn't want to inject myself. 😁

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  • Posted

    Sorry to butt in but my daughter is 13 and about to switch from Imaran to Infliximab. Any feed back would be grateful.
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  • Posted

    Thanks for your reply nicki. I'm posting from hospital, I took myself to a&e on mon eve as my symptoms worsened, they've done an MRI a CT scan and all so far negative. Could be that I've just picked up a nasty virus and because I'd had infliximab it had knocked out my immune system leaving me with nothing Left to fight it off, still waiting on a couple of results.

    Your husband sounds very supportive ( lucky you), mine isn't as supportive as yours. My family are great and to be honest I don't like discussing it with friends , my brother in law has crohns and has been helpful, but I Don't know many people with IBD.

    I have a specialist nurse that I liaise with and she's been fantastic and couldn't imagine life without her just lately.

    I've never heard of Sarah ringer but did check out a few of her trailers, some of which I found useful.

    I have 4 children ranging from 3-16!

    So have you made a decision on the infliximab ??

    Clare

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  • Posted

    Hiywot

    I've never heard of imaran, but yes I would recommend infliximab, it really has been life changing for me.

    It has given me a new lease of life

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  • Posted

    Hi Hiywot.

    Imuran is azathioprine isn't it? I've just had a look at my tablets and there's both names on them! All I know is that Aza is not working for me and hasn't worked for a good while now. I am making the decision to go with Infliximab after much consideration. 13?? That's just cruel. :-(

    How is she getting on?

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  • Posted

    Hi Claire, Poor you! I hope you are feeling better. Could the virus be the reason for the adverse reaction to the infusion? As if this disease isn't enough without our bodies picking up every other germ going!!!!

    I have decided to go with Infliximab; although I have an additional complication of them finding latent TB in my blood test. This came to light before Xmas and I took a 6 week course of antibiotics and weekly blood tests but it's very possible that the course should have been longer...a slight miscommunication between consultant and nurse. So I've had another blood test and hopefully if the TB count is low, or better still gone, then I may have my 1st infusion in April, if not then I'm looking at end of May (at earliest) after another course of meds. I did consider just having the surgery to get it over and done with (and I am becoming very impatient) but I think I will give infusions a chance and keep surgery as my last resort. They have promised to monitor me and if there is no improvement in 6 months, then I will have surgery asap.

    4 kids? How do you cope?? I've only got my son, who is 15 at the end of the month, and he is enough to cope with. At least if I am having a bad day he can get a meal sorted and look after himself (within reason, lol) while I sleep & sleep & sleep!! My fella is great but a useless cook!!! :-)

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  • Posted

    How funny nicki my fella can cook but not a lot else when it comes to round the house stuff! Mind you he's had to use the washing machine a fair bit this week as I'm still in hosp. They think I might have a heart infection, will be confirmed if it is definite after a procedure tomorrow!

    Fancy you having latent TB then, that's just typical and like you said in message before its typical and another complication to add on to an already massive one that our bodies are being put through! I was tested for TB this week again , which was obviously negative.

    Nothing is seeming to prove straightforward with this illness, and when I have a good day I cherish every minute of it!

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