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I feel like I have no control over my body...

Posted , 5 users are following.

twinny-brankz
twinny-brankz

Hello,

I was diagnosed with Ulcerative Colitis a year and 3 months ago after being misdiagnosed as IBS for 18+ months.

After having my second colonoscopy I was prescribed Pentasa suppositories for proctitis and have spent over two weeks on them fine.

However last week I had no control over my bowels but it's very strange, I feel as if I need to go but when I do not much is there and as soon as I stand up it feels like I need to go again.

I have spent the last 6 days taking Picolax and Ducolax thinking it was a block only to this morning having an accident in the car on the way to work and having to ring up again.

Its really frustrating as the people at my job have been really good to me and I just want to go into work and be able to save enough to get on my feet.

Yet again I ended up having another panic attack because of this and I'm too scared to even get in the car, I tell myself it's ok and I having coping techniques that have worked before but the pain of not being able to physically sit on the toilet is too overwhelming.

Im at a loss, my GP receptionist says to talk to my IBD nurse, I've emailed and called..heard nothing back so far. The GP is pretty much at a loss when I've have bad spouts because I'm under the specialist but she basically works on her own with so many patients that it takes time to come to me.

Anyone else have this problem or that can help me please?

H x

 

0 likes, 9 replies

9 Replies

  • jill18833
    jill18833 twinny-brankz

    Posted

    Hi T, I know,this is all so confusing isn't it? I was diagnosed with proctosioiditis( a form of proctitis) two years ago after being told for nine months it was piles!!! Anyway it sounds as if you are flaring,with urgency and multiple urges to 'go'! I use a Pentasa suppo nightly but also on Asacol oral tabs,maybe you need to treat 'from both ends'? Are you having cramps/ blood etc? I would chase for some extra meds to try and calm flare down, xx
    • twinny-brankz
      twinny-brankz jill18833

      Posted

      I was wondering if I was having a reaction to the Pentasa which is why the problem has come up worse?

      Im waiting to hear back from IBD nurse but will ask if I can take something oral as well, as I'm having cramps and some blood.

      Thank You 

      H x

  • kittd
    kittd twinny-brankz

    Posted

    Hi sorry to hear you're having such a bad time. It's such a distressing situation.Your symptoms sound like mine. I have proctitis & ibs and Gastro Dr said constipation is common with it. I have 2 run 2 loo but when I go it's blood, mucus & awful flatulence. I feel the urge like you to go but mainly blood. I take Lactulose at night or Dulcolax but then worry next morning when it'll work.

    You really do need to speak to someone. My ibd nurse is hard 2 get hold off as v busy in clinic or endoscopy unit but I get a reply if I email her. Can you email yours? If not maybe try to speak to yr Consultant's secretary?

    Sending you a virtual ((hug)). Difficult for people to understand who don't have this condition & it's not an easy subject to discuss but this site offers lots of help & support from people who understand. I really hope you get some help. Keep in touch. PM me if you want.

    Take care.

    Kitti

    • twinny-brankz
      twinny-brankz kittd

      Posted

      I took Ducolax this week and found that it really came out of no where when I went, and then the same problem arrived and it makes it harder as I work in retail rolleyes

      Thank you for the hug, really need it at the moment I'm finding it hard to get in touch with anyone and when I do i usually get the wait and see if it settles or we can discuss this if it carries on at your appointment.

      My IBD nurse is always really busy and my GP has knowledge but doesn't want to do something without her confirmation and as getting in touch with her is hard so big circle.. 

      Thank you for replying!

      H x

  • jill18833
    jill18833 twinny-brankz

    Posted

    Hi. T, as you are having blood/ cramps/ urgency it def sounds like flaring,sounds like you need more meds than just suppo? Keep on at them!!!! Hopefully they will prescribe more meds to get you into remission x
  • looloo43
    looloo43 twinny-brankz

    Posted

    Hi. If you are getting diarrhea & urgency I would not take any laxatives as they will exacerbate the problem, check this with your ibd nurse. It definately sounds like you are having a colitis flare, but it's also common for colitis sufferers to have ibs too. when you feel like you haven't emptied properly & have to keep returning to the loo only to do a little bit, - I have the same when flaring. It really could help you to ask doc for some oral prednisolone (steroids) for a few weeks as they usually calm the flares down for me, & many sufferers. It is awful - I know how you feel. You feel you can't go anywhere with confidence of not having a bowel accident. Don't give up on the meds though, 2wks on them is not long at all. take care
    • twinny-brankz
      twinny-brankz looloo43

      Posted

      I finally spoke to a GP who has put me on steroids and told me to carry on as normal as I can, though I fear I may not have a job for longer still in probation rolleyes 

      thank you for replying, it's been hard to get my parents to understand the panic I have with it, one day when I was suppose to be going to work I was in that much pain and shaking so much I couldn't even get in the car! It's nice to know I have people I can speak to smile x

  • twinny-brankz
    twinny-brankz

    Posted

    Thank you everyone who replied and helped me smile

    Finally spoke to a GP and been prescribed some steroids and told to go on as normal as I can. Have an appointment with IBD nurse next week, a bit annoyed I've heard nothing in a week and even left a message with the clinic reception! rolleyes oh well fun times!

    Again, huge thank you! X

     

    • jill18833
      jill18833 twinny-brankz

      Posted

      Hi. T,glad you got some more meds,you should feel a lot better pretty soon with the steroids. So glad we have this site to help each other as it can be very difficult to access advice through consultant/docs. The ironic thing is,I was told the only site I should look at was the NACC one ! Good luck and keep us posted x
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