Giving up?

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’🤣

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! 💐

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 💟

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. 

  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

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. : )