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What treatment next

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sage96208
sage96208

I was wondeirng if anyone can advise on what to do next.

I have chronic constipation with my UC and have been having a flare for over 2 years now.

I've had two hospital stays and the Dr's do not seem to listen/care when i speak to them about how difficult things are for me.

Im currently taking 150mg azathioprine (max dose for me weight) mesalasine orally, linaclotide for contipation and docusate in the evenings as well.  pred and mesalasine suppositories and have an entyvo infuision every 8 weeks.

Firstly- i cannot get on with the suppositories, they absolutly stink and using two different types (sometimes up to 4 a dfay) i feel interferes with my constipation and makes it worse. I've been telling the dr's for two years that i cant get on with them, i may sort of stop bleeding fo ra bit, its minimal but one missed day results in loads of blood loss again even with the azathiporine and entyvo. Oral pred. has not touched a flare in the past and bnoth times i have been prescibed it by the GP i have been so far gone that  i've ended up in hospital anyway.

Im so consipated i feel like i have heart burn all the time and dont want to eat. I really dont know what to do. The dr's just seem to fob me off. I saw the consultant in dec and he organmised and urgent colonoscopy that i had in jan and a three month follow up. I still havent seen them as my appointment was rebooked three times.

The consultant who did my colonoscopy yet again said i should use suppositories and didnt listen to the issues i have with using them. surely the medication has to work for the patient too?? ?

I tried to speak to my gp last week about my concerns and they said 'make sure you see a consultant and be firm'. as if two years and multiple meetings with the pals team and investigations isnt enough. I just really dont know what to do any more.

Has anyone else had an experience like this and what did you do? WHat would be the next steps and how do i convince the consuiltatnt that all is not rosy???

Aslo just to note for those that may suggest it and sorry to sound grumpy- but re: constipation, i drink more water than anyone would believe! water consumption is NOT causing my constipation.

0 likes, 6 replies

6 Replies

  • JonWHut
    JonWHut sage96208

    Posted

    Hi,

    I can sympathise with you on the doctors not listening. It took me some time for them to actually pick up with what I was saying.

    I too couldnt get on with suppositries or foam enenmas, but my reasons where different to yours - I was having too many bowel movements and as such it was incrediably painful.

    Although mine was different, I only convinced my consultants after keeping records of all my medications and bowel movements as well is why what I was eating an drinking - i found an app called My Symptoms. After I printed off the report and showed them it is black and white is seemed to hit home and things changed pretty damn quickly!

    Has your GP written a letter to the consultant on your behalf as I always feel the consultants think we know nothing at times so don't want to listen to us, yet know exacltly whats going on with our bodies?!

    Don't give up is my advice,

    Regards,

    John

    • sage96208
      sage96208 JonWHut

      Posted

      Hi there, thanks for your response!

      I know it's so annoying isn't it. At one point I was on a bad flare and the reg was trying to tell me I had IBD on top of my UC. And I was ignored until an out of hours dr had me admitted and I was given entyvio. I even on admission had a super long list of all nu bloody bms and nobody would look at it because it wasn't "useful data".

      Now I've been on entyvio since Oct and there is no way of feeding back that it doesn't seem to be working. It seems like things only change when I go into hospital. Even contacting the pals team or ibd nurse has no affect at all.

      The comical thing is that Ive worked in the nhs in acute hosptial settings for 5 years. Worked in that very hospital for three. Then worked for the cqc for 3.5 years and now I'm back in the nhs and they still don't listen to me! I'm not a moron and know my body and would like timely action to stop me being ill again. I think what works against me too is that I'm constipated so thier brains can't cope with something that isn't on thier little list so they can't decide or recognise how bad things are. Being constipated for two years is a real drag! And I really don't think shoving more stuff up my bum is going to help with that!

      Anyway rant over! Perhaps I can take my boyfriend. I'm starting to think that part of me being fobbed off is down to my age and sex you know. Sad!

    • JonWHut
      JonWHut sage96208

      Posted

      I was on Remicade and it wasnt working. I kept track off all BM and dumped the report on the desk when I went to see him. I was asking for surgery to remove the last part of my bowel for some life back, but I dont think they took it in actually how many BM a day I was having until I showed them detailed records - then it seemed to hit home and clicked...wow this guy actually has spent time noting it all down.

      I quite often took my wife along, as it was always someone else to chip in and mention something that I may have forgotten... 

       

  • Fluffe
    Fluffe sage96208

    Posted

    HI Sage.. I'm so sorry you're going through this too.  It's strange I'm hearing more and more people being constipated with colitis!!! Yer.. I'm constipated too and I can actually feel where it seems to be 'stuck'.  I had predlisone right into my system as I wasn't responding fast enough to the bleeding and at the moment am weaning off of it along with being on just azathiroprine though it's early days as I've only just started it three weeks ago.  I had some pixolax (sp) to clear stuff out though it seems to have somewhat returned and use laxido four times a day.  So far so good after bleeding for nearly a year to the point it looked as though I'd had a monthly period in the toilet each time I went! (Sorry for the graphic description).. when in the hospital - once I was cleared out - the bleeding actually stopped - virtually after the clear out and for the first time for more than a day!!!  I had octassa which didn't work and pentasa suppositories which did nothing - even the foam enema didn't work and only managed to burn me terribly inside...

    I finally managed to get the head consultant after one of the doctors in my surgery wrote. (The doc I'd been assigned to actually said he was too busy to be the intermerary!!!)   I also wrote the head consultant. Lay it all out on the line the sequence of events.. be forceful - bring someone with you too to the appointment who can also be forceful if necessary.  And if you have a number of the secretary - call too.  It may be an option as I found the IBD nurse completely useless to say the least???? (Up until then I'd only seen a doctor once) - and now I finally feel I'm moving forward.  Still constipated somewhat but at least 'moving' in the right direction! cheesygrin

  • sage96208
    sage96208

    Posted

    Ok thanks guys! I think the take home message here is that in depth recording needs to happen. Thing is is that it's a lack of bm that is my problem so it's difficult to document that if you get what I mean?

    I also logged a rather massive complaint and had a five page response from the medical director on all my issues that basically boiled down to "I'm sorry you were confused about what we told you".

    I do go to the toilet but only because I basically abuse laxatives and haven't had a day not taking them in the last two years.

    In hospital even Picolax wouldn't get anything moving on the first go I needed about 4 doses. I had to have it to take home too. I also asked for some movicol to take home on my last hosptial stay and *shocker* the dr forgot to prescribe it and I was discharged on a weekend!

    I just find this whole experience so stressful and upsetting. Not being listened to about your own body is the worst thing they can do, it ends up costing the nhs so much more money and time in the long run to treat you when you are acute rather than being proactive when you try and save them a job!

  • Jo2885
    Jo2885 sage96208

    Posted

    I'm going through the exact same thing! I feel your pain I really do. After 1 week of no movements i was really desperate! I had an entire bottle of oj, black coffee, laxido, syrup of figs and fybogel! And finally there was movement! I'm not suggesting for a second that you take what I took but I do understand how annoying this is.

    I've also been to the doctors at least once a week and even to a walk in center but the only thing I got was steroids which don't really work for long. I've only recently been diagnosed with this and It seems like the doctors don't really know what to do when you go and tell them what your going through they just try to fob you off with various medication.

    I hope you feel better soon x

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