Pains really getting me down now & have to wait a month to see a specialist 😩

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Hi again

Well, stopped laxido a few days ago now and the pains are still there, in fact a bit more painful than before. Spoke to the ibd nurse who managed to get me an app for a months time but not with a consultant, he's a registrar. She told me that I shouldn't be in pain and it's not right what I'm experiencing but I have to wait a whole month before being seen?! She said he'll push my belly and go from there. Possible x/rays/ct scan and if needed another colonoscopy but I know it'll be months before I can have those! I'm getting pains on the rhs too now and higher up. It's affecting everything i do, have no energy whatsoever. Started taking my anti spasm pills again but they're not touching it. Not sure what to do. I guess if I can't take it anymore then just go to hospital. Just read something on here about toxic megacolon but I'm sure I'd know if I had that! I look about 6 months pregnant! Any help would be great. Thanks in advance guys xxx

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  • Posted

    Hi Jo,so sorry you are suffering so badly. I too have had almost daily pain but probably not as bad as yours. I did a lot of research and wondered if I had inflammation again. Then had small amounts of blood on paper so decided to up my Asacol to four am and four pm equalling 3.2 grams.I added a nightly enema 1g. I also started 2 Buscopan and 2 paracetamol at very first sign of pain coming on and repeated these after 3-4 hours as needed. Cut right back on bread and started bio yogurts and Actimel. Pains been a lot better since so might be worth a try for you? Have consultant appt on Tues and am determined to pin him down re pain and safest efficient painkillers! I know this is gross but if you are passing number 2s and wind it is very unlikely you have toxic megacolon. Could you speak to your consultants secretary for emergency appt? Let me know how you get on matey xxxxx
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    • Posted

      Hi Jill

      Thanks for responding and for your advice, as always I really am so grateful to you. I was taking 4.8g asacol and recently reduced to 3.2g as I actually thought it was under control! I asked the nurse whether I should up them or reduce them and she didn't seem to think it'd make any difference. I also asked if I should use the pred foam but again she said it was pointless as I wasn't bleeding. I've had cramps on and off since being diagnosed & have sort of got used to them but this is different now. This is why I thought there was something going on with my 'lady bits' but that was all clear. Why am I getting pains all over my tummy now as it was just lhs but now it's everywhere :-(( She just said that was the best app I could get. Makes u wonder how they can let us suffer like this. I understand they're busy but surely people who are really in awful pain should be allowed to see someone before 4 wks! Sorry mate, just finding it all too much to deal with right now. Just burst into tears as don't know what to do with myself & I can see I look awful. I'm sort of managing to poo a bit but not easy as come off laxido and taking codeine for the pain so might start taking sachets again soon as thought it was those causing the pain but it's been worse since I've stopped taking them!! Agh, this disease is way too complex, just can't seem to get my head around it. Thanks my love and wish u all the best of luck for your app. Pls let me know how it goes. Lol xxx

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    • Posted

      Jo,if it were me I would restart Laxido and up meds including foam/enema because you can be inflamed without blood? Have you tried hot water bottle on your tummy to ease pain? I am not a doctor or nurse so can only tell you what I would do whilst waiting appt. if it gets intolerable get to A&E as you will be helped much faster mate,keep in touch xxxx
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    • Posted

      Hi Jill......I went into flare last week and after trying for 2 weeks to get it settled had to go to gp today to get the dreaded steroids. I must say if all goes well in 2 weeks time I will not miss all these symptoms....had the bloody Diarrohoea  and frequency pulse rate at 110 😧 cramps and pain feeling awful and dehydrated  l 😰 . I was loathe to go on them so  close to surgery but needsmust...hope they work quick....up for my preassessment Monday and iv iron. Yeah I had hot water bottle and it does ease pain as does belly breathing 
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    • Posted

      Thanks again ladies

      Perhaps I'll do what u suggest then Jill, sure it can't make me feel any worse! I've got to help myself these next few weeks as it doesn't look like anyone else will so I'm going to try all those things mate, thanks so much. Just hope I can make it to my app but knowing my luck, on the day of my app I'll be fighting fit!!! I'll keep u posted lovely. Good luck for your app Nd to MaryJo too xxx

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  • Posted

    hi. Sorry to hear u having rough time...it ain't easy.  Seems to b inflammation . If having no joy with ur doc I agree with Jill I would head for a&e ......sometimes u can get infection too in bowel and need antibiotics....I am tortured this last  2 week with severe flare ....went to gp this am and got steroids. It's no bunch roses all these symtoms..they just wear u down and down 😰 good luck MJ xx
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  • Posted

    You shouldn't have to wait, I had to take myself to the A and E, I couldn't take it anymore. ..don't hesitate sweetheart
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