Now an official member - diagnosed with distal colitis :-(

Posted , 3 users are following.

Hi all

I couldn't get anywhere with getting a quicker appointment on the nhs for a colonoscopy so my family helped me out & I managed to get seen on Thursday night. The consultant thought I had acute colitis so booked me in for an urgent colonoscopy last night! Wow money talks eh?! 

The colonoscopy was a little harder than expected as presumed i'd be pretty much knocked out but the drugs didn't affect me in the slightest so ended up watching the whole procedure on the TV!! I think I'll be asking for more sedative next time as was pretty uncomfortable. I thought I would be sparked right out but didn't even feel like I'd had a vodka!! I asked for more sedative but was told no!

Anyway she instantly told me that I had distal (left sided) colitis so was moderate and definitely not Crohn's disease so a slight relief but still a wake up call! 

She's told me to see my gp on Tues to get asacole? Not sure if I've spelt that right! I'm using pred foam which is fab but I feel totally washed out today, guess it's all catching up with me.

I'm relieved that I've finally had a diagnosis as it has been driving me mad for months now but gutted we've had to pay £2k for the privilege! Wish the nhs would take rectal bleeding a tad more seriously as a & e were pretty useless & told me to go home.

Anyway I'm sure this is the start of a very journey for me and no doubt over time we'll get used to speaking to each other as got a feeling I'm going to be asking several questions!! Sorry in advance :-)

Thanks for your help so far guys, it's all been invaluable & was great to read peoples stories of their colonoscopies so at least I has an insight as to what to expect.

Thanks 

xxx

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6 Replies

  • Posted

    Hi again, glad you have got a result and can now start appropriate meds. I also had months of misdiagnoses, from piles to yeast overgrowth etc etc. I just felt worse and worse and couldn't get a speedy colonoscopy on the Nhs either. In desperation we also paid 2k for private consultation and colonoscopy which was done in a few days, as you say money really does talk!!!! I was diagnosed with proctosigmoiditis, basically the rectum and first part of sigmoid involved in uc. Started on Pentasa oral and nightly enema. I felt much better in a couple of weeks but over time started getting abdo pain so I am now on Asacol,4 tabs in remission and 8 tabs for a flare up. I also use the enemas 2/3 times weekly to try and maintain remission. The private consultant that I saw also works for the NHS so I was able to see him 6 monthly as an NHS patient,(thankful at least for that)as couldn't afford to pay for the rest of my life! Anyway,back to you. In the coming days I'm sure you will go from relief at knowing what is wrong, to thinking "why me?" Just wanted to reassure you that you will feel normal again,I find Asacol very good , just make sure you are strict in taking your meds! Take care and keep us all up to date with your progress xx
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  • Posted

    Could I ask what PredFoam is?  I've been diagnosed with Ulcerative Colitis but don't seem to have even similar experiences as other people.  Sometimes I feel like I've been told incorrectly. My symptoms are blood in poo, alot of built up air so when I go to the toilet first thing in the morning it's like a bullet out of a gun.  Also (not being too crude) I have this mucus come out of me like not cooked egg whites.   Do you think PredFoam could help, I already take 2 1200mg mezalzine?
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    • Posted

      Hiya

      I was only diagnosed on Friday night so very new to all this but all I know is that prednisolone rectal foam also known as predfoam is totally brilliant in my eyes but I understand that it's a short term fix until I get my drugs on Tuesday. Your symptoms are exactly the same as mine but my consultant wanted me to use the predfoam steroid treatment to calm down my bowel before starting on any meds as it is quite inflamed. I don't believe it to be a long term solution hence the reason why you may have not been offered it, I'm not sure?! You should call your gp if you're still getting no joy from your meds but I've heard it can be a long journey for some until you get a good balance of medication. Hope you manage to get some help xxx

      Thanks Jill, so sweet of you. I'll be sure to take my meds & do get a huge relief from this foam, just so nice to get out and about & starting to feel a bit more human again. 

      One question - do you feel totally shattered as I can't seem to do a great deal without needing a sit down or a nap! Not like me at all as I'm a 'doer' not a don'ter'. My husband keeps finding me sparked out on the bed!! 

      I'm gutted that we're £2k down but can rest assured that even by this time next month I still wouldn't have received a diagnosis on the nhs so well worth the money!

      I seem to be walking around in a bit of a daze atm, not sure when it'll hit me really but just gonna take each day as it comes. 

      Thanks again for your support & no doubt catch up again soon when I have yet more questions!! Xxxx

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  • Posted

    Hi again, yes tiredness definitely whilst flaring,and not so much when in remission! Good luck xx
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    • Posted

      Thanks Jill! Just bathed the kids & feel like I need a weeks holiday...lol!! I was gonna get a book to try and help me look at my diet etc, worth doing or would this be something that I'll discuss with my consultant? Sorry for the questions but it's so great to be able to discuss this with people that understand what I'm going through :-) 

      xxx

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  • Posted

    Personally I read up on as much information about uc as I could! Worth getting a book on the subject but don't frighten yourself as everyone's experience,symptoms etc are different. There are some horror stories out there but to be fair most people respond to treatment very well. Another website: Healingwell also has some useful tips and information. Some people find certain foods aggravate a flare so it might be worth you keeping a food diary at some point? Rest when you can and good luck with the Asacol x ps some people also swear by probiotics but I'm sure your consultant will talk to you about avoiding Dairy etc x
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