Giving up?

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I’m at the point of giving up with this crappy disease. After 18 months on steroids, several months on biologics complications after complications after complications, I am now on zero drugs whatsoever & my gastro is saying I don’t need to be on anything now as my latest pill cam was “normal”. Yet how come I still feel so crappy? Am so over being told by Drs that Cos one test is “normal” they don’t think necessary to have me on any medication right now! I can’t leave the house, my belly hurts, I spend around 4-5 hours a day on the loo, exhausted & the list goes on. After 30 years of this disease I’m pretty sure I know when I’m sick and when I’m ok (and for the record I was in remission for 20 years and never bothered a gastroenterologist!) Had enough now sad 

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  • Posted

    There seems to be a theme of tests are fine, bloods are fine- we don’t feel fine.

    You’ve had a rubbish time recently and maybe need to recharge the old batteries.

    Have you had a bile acid test? That may be giving you gip too.

    I hope you feel better soon. I too have days where I think sod this!

    Unlike you I went 24 years being told I was ‘anxious’🤣

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    • Posted

      Yeah I had a BSM sehcat scan last year and was mildly suffering so initially they fobbed me off with that. Then they realised that it was my crohns after positive FCP, CT & Pill cam. Then I was due to start stelera when they discovered the humira had caused cancer cells to generate really quickly (seeing oncologist for this on Tuesday) so they halted everything except budesonide. Now stopped that for just over 2 wks and the last few days (aside from the chickenpox of course), my stomach is getting considerably worse. Can’t actually bend right now as feel I may be sick & pass out. Not fun 😞

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    • Posted

      Did think about it but then thought maybe it’s the after effects of chickenpox or something on top of everything else. Plus I have the oncologist on Tuesday so don’t want to miss that appointment. And another plus lol they’ll only run bloods so basics & send me home after 12 hours or so which means I’d have to find childcare for my girls, puppy care for the dog, a ride over there & so it goes on. I have to be dead man walking before I go in lol 😂😂

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    • Posted

      Yup. Cervix. Not sure how bad they’ve spread so full hysterectomy initially then go from there. Oncologist Tuesday 🙄 Always something... Add to all this the DWP have taken almost 2 years now & still haven’t assessed me to prove “I’m actually sick” despite all evidence sent. It’s ridiculous 😖

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  • Posted

    Sorry to hear that you're still feeling rough. 😶

    Your post reinforces my opinion that most doctors know jack sh*t about their patients and don't listen to what they're being told.

    I agree that with your history you know when you are not well - despite what their tests are telling them.

    It's understandable  that you've had enough of being palmed off!

    Any chance you could demand a second opinion?

    I sincerely hope that you start feeling better soon! 💐

     

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    • Posted

      Thank you. I’m not seeing my gastro now til June as he’s apparently on annual leave 🙄 

      I think that cos of this whole cancer crap due to biologics they’re gonna be difficult on the air of caution I guess but even still, just cos my belly doesn’t show scars on the pill cam doesn’t mean I’m not feeling like complete pants 😢

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  • Posted

    Wow Hollaka I hear you!

    2 weeks before Christmas 2016 I had an absolutely clear fecal calprotectin test so was deemed fit though I was telling my Gastroenterologist I’m in pain, losing weight, tired to the point of bed bound and generally unwell constantly. By Christmas Eve I was fighting for my life with Crohn’s Sepsis - part of my ilium was so inflamed it was completely blocked - that didn’t happen overnight! I’ve had numerous disagreements and ongoing battles with my gastro team as to when I’m unwell. I don’t believe the tests are anywhere near as accurate as they claim them to be. I had a basic MRI with contrast which picked up my inflammation after a series of false negatives. It is so hard living this thing without having to fight the very people who are there to oversee your care. Are you in the UK? You can insist on a second opinion which I know is hard work or go to your GP and ask him/her to call for you and fight your corner. Sorry I don’t know the American system. Please don’t give up, you know your body, as hard as it is you have to keep knocking on doors until finally someone hears you and opens...it’s totally unfair but seems a common theme with this vile disease.

    wishing you all the luck in the world, get well soon 💟

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    • Posted

      Thank you. I hate this disease and like you said the stress of fighting all the time to be “heard” is exhausting in itself.  Just one wish, that’s all I need lol...😕

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  • Posted

    Sorry to hear all your problems but don't give up.  We all go through this and always will with this illness.  There is not enought knowledge about this illness but we will get there.  I was on Steroids for 5 years, the max my Consultant wanted me on them for together with Pentasa.  I am now off Steroids but I have been told I will be on Pentasa or the equivalent for the rest of my life if I remain under control but if not I will have to go back on Steroids again.   Just one thing, my Consultant says he doesn't think stress plays a part in this illness but I totally disagree with him on that.  Stress does play a part and you sound pretty stressed out at the moment, understandably so too.  I have yet to meet a Doctor or Consultant who suffers with this debilitating illness and I think that if they did suffer they would know what we are all saying.  Keep going and as someone suggested, if possible seek a 2nd opinion.  Good luck. 

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  • Posted

      HI,   My heart goes out to you.  I wish I had something profound to say other than keep flghting and try and stay strong  We all have days that we feel hopeless    But we are here to help provide support for each other.  I live in the US so not exactly sure how you go about getting second opinion or changing consultant.   

       Happen to have RA and crohn's.  Lovely combo-awful   My gastro doesn't agree with the treatment of rheum and vice versa.  But I think we just need to keep plugging along even when we don't feel like it

       I have had reactions to 2 biologics so not sure what is next   I am fearful of infusion meds b/c of worries of complications and severe reactions.   But don't have much choice but to give it a try

        I hope you can find some relief and peace of mind  

        Wishing you better days,    Gloria  xoxo

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  • Posted

    Hang in there. I'm sorry you've been dealing with this for so long. I have Crohn's and diverticulitis and have been going up and down with UTI's and flare ups. I still have an ostomy bag and recently had a nephrostomy, which is a catheter that originates thru an incision in the back; it has to be there for 6 weeks and then will be internalized for 6 months. The doc reccomended this to avoid kidney failure. I am also on steroids and have had 2 flare ups. Don't ever give up. : )

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    • Posted

      Thank you. It’s hard. Every. Single. Day 😞 

      Best wishes for recovery for you also. 🤞🏼

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