What to do

Hi all,

Its been a while since I posted anything but have been trying to deal with everything that has been thrown my way!

All of my test results came back normal on the last round so have been told that is it for getting in the door to see a rheumatologist. My symptoms have continued as usual so have had no reprieve from that.

The original diagnosis I had nearly 4 years ago of Ulcerative Colitis seems to have been wrong and from recent biopsies it is looking more like Chrons instead. Have been waiting since early May for an appointment with my consultant in gastroenterology but have heard nothing. My gp has written to them as well.

I have had more cysts on my ovaries and have been told I have to learn to deal with them as there is nothing they can do.

I also now have kidney stones to deal with.

I have asked my gp if I can go to another hospital even though it would mean a lot of traveling but he has said the 3 other ones nearest still require the same blood tests to even get in the door.

Hughes syndrome has been ruled out, normal bloods.

Lupus has been ruled out, normal bloods.

My gp is now left grasping at straws. He has suggested chronic fatigue syndrome/m.e. Also fibromyalgia is another possibility.

I just dont know how much more I can take to be honest. I am in a flare of whatever this is again and I feel like crap!

Sorry for the rant and moan but I just needed to vent to other people who get where I am coming from. My family try to support me but they dont get it!

I hope you are all having a fab week and that you all have a more fab weekend.


Sharon xxx

9 Replies

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  • HI Shaz, So sorry you are going through this you must feel like every door is closing and feeling a little lost. We have all been there how your feeling and can totally understand how you feel. Question With your Chrons are you still waiting to see the consultant about it? as if you are it may be worth asking your GP to chase up that appointment for you, then when you get there hit that consultant with the Chrons diagnosis etc and remind them that Chrons is a autoimmune condition also, and even tho there is normaly no link to the two it is possible for some patients seen with symptoms of Chrons to also have symptoms of Lupus also without having a positive ANA result Its worth asking that consultant about this while your there. I hope you get to see the consultant soon. But keep ringing the GP chasing it and also ring the consultants Secretary. x sending best wished keep us posted.

  • Thankyou for replying.

    I was diagnosed with Ulcerative Colitis 4 1/2 years ago. It was deemed to be very aggressive and I was either intolerant to or the meds just didnt work.

    I had to have my colon removed 3 1/2 years ago as I couldnt keep food in my system.

    I now have a permanent iliostomy. They kept a stump at my rectum as originally they planned to male an internal pouch and reattach everthing but I then started to get pulmonary emboli and dvt's.

    Long story short got an umbrella filter in my aorta to stop the big clots going to my lungs and am on rivaroxaban as warfarin was totally ineffective for me.

    I am under haematology but they only treat not find a cause - I have been beating my head against that particular wall for 3 years now - but if/when I get in to see my gastro I will ask about it.


  • Oh bless you, you have really been through the mill with it all, I hope your managing to keep strong and Im sending you some hugs. I really hope you do get to see them soon. Sounds like you have been through enough as it is and this is just one more thing you have to battle. We really shouldn't have to fight for the right to treatment its such a shame that its like it is. Its always such a long waiting game. Good luck x

  • Hi Shazz

    You have been through so much hun. When i was diagnosed with Lupus it took them forever to find out what was wrong with me. There are alot of autoimmune conditions in my family and at the minute it is pot luck πŸ˜‰, its like who is next to get picked on! πŸ˜€ At the moment my 6 and 12 year old girls are being investigated for APS, arthritis and Lupus. I know from my experience with drs and consultants that we know more than they do!

    Dont loose hope hun. You are never alone. We all have flares and worries. Dont ever be afraid to vent - we help each other - together we are strong and we will always be there. My thoughts are with you love and my wishes for answers.

    Lupie hugs

    Esky xx

  • Thank you for replying.

    It does get really hard to deal with everything sometimes. I was coming to terms with not having a diagnosis for whatever it is when I started having back pain. Turns out it was kidney stones. And of course being on blood thinners and having UC/Crohns I cannot have anti inflamatories that would help most! Not to mention I thought I knew what pain was having a pulmonary embolism but I would gladly have another one of those as it is nothing compared to the pain of the stones trying to pass!

    My family are brill but my husband is one of those people who are never ill so he just doesn't get it, he does try to though. My boys, 16 + 11 know I am poorly but not to the extent that I am. My parents I have never got along with, I have never really 'fit' into the family dynamics but my mum will look after the boys in an emergency.

    It is just draining to be honest which leads to a never ending cycle of stress and flares.

    Thanks for listening.

    Sharon xxx

  • Anytime hun. Like I said you are not alone. Most of my family dont understand. My mum gets some of it as she has alot of auto immune stuff. In my i eyes i put it down to its a case of you dont get it UNTIL you get it. I have come to the conclusion that i have to take one day at at a time and to hell with everyones opinions. I am me Lupus and the pain doesnt define me. And trust me the pain is intense! As you will know. Stress does make it alot worse - trust me i definately know! God some of the stress i put up with OMG - disturbing at times, and thats just the dragon in law πŸ˜‚πŸ˜‚πŸ˜‚. Bless her heart ahem πŸ˜‡.

    People have discussed in the past that Lupus is possible with negative blood test - this is true. But having UC / Crohns in itself must be really hard - my uncle has Crohns and when he has a flare he is terribly poorly so I can empathise.

    Family members dont get that you are sick because they are worried more than anything - they think ignoring the signs and burying their heads into the ground will make it go away. It obviously doesnt make it go away, but sometimes it is how family cope as they cannot understand how you feel as it isnt them. Its not that they dont care - trust me they do - they just dont understand. My husband is never ill either - what a coincidence πŸ˜‰.

    Things will get better hun. Try to remain positive and if u ever need us we are here. Even if u just want to shout or rant - a good rant oh there is nothing like it πŸ˜€πŸ˜‰. I always say that we as a group are stronger together - you are not alone, try not to worry, the lupie crew are always here 😊😊😊.


    Esky xx

  • Kind thoughts,big soft hugs and best wishes xxx

  • Hi Shazzros

    So sorry to read of all your awful health problems. As a sufferer of UC I can sympathise and I feel grateful I'm not as bad as you!.

    If you've got the energy you can chase the Gastro Appt like the previous correspondent said. You can ring the department. Kidney stones are so painful, you can be prescribed stronger painkillers by your GP different from anti inflammatories. Finally so sorry at your diagnosis problems as well. As if you haven't enough to deal with!. You could see a Rheumy privately if you want another opinion . If you have Fibromyalgia then that can be treated with painkillers, you shouldn't be left to suffer!. Hope I've helped and things improve for you soon. X

  • Hello Shazz, sorry for what you are going through. I have completely normal bloods...all of them, but for several years a multitude of lupus symptoms, plus those of related diseases. My rheumy, general doc. Neurologist and vascular surgeon all agree on one thing.....I definitely have an autoimmune disease, and that doctors are to treat the symptoms and not the name of the disease....ergo 13 medicines. My doc tells me to just call it Lupus...that way people can understand my extreme fatigue, tremors, sore knees, lack of balance, etc. Yes, they are treating the symptoms. I had to go through several uneducated docs to find this team. hang in tbere and be your own advocate. Five percent of Lupus sufferers are seronegative......normal bloods.

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