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20yrs of suffering, no formal diagnosis :(

Posted , 7 users are following.

jo19531
jo19531

Hi, im new here. Basically to cut a long story short i got ill 20yrs ago and was fobbed off with the ibs diagnosis. I had 2 hospital admissions in severe pain, swollen right abdo, white cell count so high theatre was waiting for me for suspected appendicitis and all they did was give me iv antibiotics and send me on my way. I eventually had my appendix removed by a scheduled appointment but it was fine. Since this time, i have suffered regular bouts of vomiting, chronic diorhhea (can never spell it!) my diet now consists of approximately 5 foods which DONT either make me vomit or spend the day in the loo sad  I still have daily, a section of bowel on the right which, when i lie flat, can be seen. An x-ray in A&E once showed this section to be much narrower than the other side but that was all that was said.  I have B12, low folate and im anemic. I suffer from itchy sore red eyes, im lactose inolerant and the fatigue gets so bad i cry.  My initial tests were an endoscopy and a diagnosis of reflux and blood tests. All 20yrs ago. I have seen written on my notes "Regional Enteritis" but i was discharged before any other tests were done and told i had IBS.  I have had some periods when i have felt fine and i do indeed suffer from IBS, but i can differentiate between the IBS symptoms and whatever else is going on.  I asked for a referral back to the hospital in July last year and saw a Consultant in November who was shocked that I had not had a colonoscopy of any other tests initially. He did some bloods, and i had to do a stool sample which i struggled with as i have never ending watery stools. I had an ultrasound scan on the 4th December which was a great day to have it done as i was in agony that day. The scan was clear and the lady doing it said it was clearly my right bowel.  I am due a follow up with the Consultant next week this being my 2nd appointment since my referral in July! Should I beg for a colonoscopy?! Nobody seems to care to be honest. I am constantly missing work as i have random attacks of diorhhea and i vomit often. I work with children and they insist i have 48hrs off every time i use the toilet at work for either. Pain wise, i have days where i am free from specific pain, nearly always have crampy type pains but when my diorhhea is bad and my right side clearly swollen, it is extremely painful. I have fainted during bowel movements and get wind pain so bad i cannot sit down. Unfortunately the smell i create is extremely toxic and highly embarrassing! Has anyone got any thoughts on all of this? sorry to go on and on but ANY advice would be appreciated. Should also add that initially, i lost a lot of weight, going from 8st 4 to 6st 4 in a very short time. Ive since struggled to gain wait, usually staying around the 7st 10 marker but when the diorhhea is bad i can lose over half a stone in a couple of days sad 

1 like, 16 replies

16 Replies

  • paul98022
    paul98022 jo19531

    Posted

    Sounds like Chrohn's to me, insist on the Colonoscopy. It will sort it one way or the other.
    • jo19531
      jo19531 paul98022

      Posted

      Thanks, i will just have to find my strong head when i go next week. Not a good time as im currently laid on the sofa after a vomiting attack at work, the sweats and an acute bout of the squits. Again cry. Thanks for the reply 
  • nannylin
    nannylin jo19531

    Posted

    Sounds like crohns to me too, be strong and insist on a proper diagnosis. Once that is done you can be give meds that may ease the symptoms. Good luck
    • jo19531
      jo19531 nannylin

      Posted

      Thanks for the reply, I will definitely be having strong words at my next appointment! I am so fed up, I just cannot eat without getting symptoms. It isnt even anything in particular aside from stuff containing lactose. Anything I eat either comes back or goes through within a very short time sad its a miserable existence and the weight loss worries me. Im only 5ft 3 and now under 8st again sad it takes me years to gain a few pounds and look remotely healthy again
  • jenny55563
    jenny55563 jo19531

    Posted

    Hi no so sorry your suffering, when your fatigued it's so hard to push for help but that is what is needed, if you keep a symptoms list and actually hand it over to the gastro to read rather than try and verbally recall it all keep it short and to the point. Also a list of how it im
  • jenny55563
    jenny55563 jo19531

    Posted

    I
    • jo19531
      jo19531 jenny55563

      Posted

      Great idea thank u. I had to do a food diary for my GP recently over 3wks. He never even looked at it. If he had he would have seen I had 78 toilet trips in 3wks and v little food! Grrrr
  • jenny55563
    jenny55563 jo19531

    Posted

    Sorry about that :how it impacts on your life take note of your consultants secretary's number this can come in handy if you need to be seen urgently note all blood tests and investigations done with your list of symptoms
  • CC2015
    CC2015 jo19531

    Posted

    Hi jo19531

    I really feel your pain - I have also just been diagnosed with chrones after intitally being diagnosed with Ulcerative Colitis over 2 years ago following 3 signmoidoscopys and 2 MRI's. All of your symptons sound like Chrons Disease. 

    Before your appointment with your consultant make sure you list all of your symptoms and make sure they know you have done your research. My mistake from day 1 was not pushing for a full colonoscopy because they always said i was too young for chrons or colitis yet when they just did the sigmoidoscopy i was full of imflammation hence being diagnosed with Colitis yet all along i truly believe I have been suffering from Chrons only earlier this month i had results from an MRI to say i had inflammation in my transverse colon and terminal ileum so now i am due to have a colonoscopy and biops to review meds. Your aim is to get diagnosed and put on medication ASAP so pushing for that colonoscopy will do that for you.

    Jenny also makes a very good point about the secretarys number when waiting for my 1st sigmoidoscopy i was in the same place as you my family were panicking every day i was loosing weight. My family were faxing calling doing all that they could to get me in for my camera they estimated even an urgent camera could take 6 weeks. My mom also dragged me to my GP and asked him to chase the camera he could see how much i was suffering and called the hospital direct all this will help in the end i got my camera 2 1/2 weeks after seeing the consultant unfortunately had to pay £120 to skip the waiting and go private just to see the consultant. They have so many patients to deal with you have to make sure the make you a priority. 

    I hope all of this helps I am just recalling my experience with the NHS and what advice I would give you. I really hope things pick up for you soon, wishing you all the best! 

    • jo19531
      jo19531 CC2015

      Posted

      Thanks for your advice, it is greatly appreciated. I also got told when my symptoms first began that I was to young aged 19! I will take a list with me on Thursday. I think ive been told that often that there is nothing wrong that I now believe it myself and have just put up with the constantly miserable life I have led for 20yrs sad My partner is worried sick, nobody I know survives on 2 slices of bread and a piece of ham every day other than me! Something isnt right!
    • CC2015
      CC2015 jo19531

      Posted

      Definitely Jo push for the camera & hopefully they can put you on some meds soon! Really hope your on the mend in the next few months! All the best smile
    • jo19531
      jo19531 CC2015

      Posted

      Is there any link between this and joint pain? Since I got sick again Friday my knees have ached and today they feel like I just walked a mountain! (I know this cos I walked snowdon in the summer lol) Seriously, they ache sooo bad. And I have red itchy spots on my legs???? sad
  • jenny55563
    jenny55563 jo19531

    Posted

    Hi Jo most types of autoimmune diseases that cause inflammation in the bowels can cause arthritis type joint pains, I have high fecal calprotectin and get lots of joint problems although I have been scoped both ends all clear, I recommend pillcam instead of endoscopy it's a bit time consuming same prep as colonoscopy and you have to do a dummy run but it checks your entire small bowel the endoscopy does not do that however you can't take biopsys with pillcam
  • IndieHannah
    IndieHannah jo19531

    Posted

    Hi Jo....what a story...and one that I can really relate to.  From what you describe it sounds like its your small bowel, specifically the Terminal Ileum...and if it is Crohn's, thats the place its hardest to detect. Your symptoms sound like a stricture from either inflammation or scarring from inflammation.....But that is only what I think.  I'm no medic, but i have had Crohn's for over twenty years and your symptoms are very much like mine.  Sadly, if it is in the small bowel, a colonoscopy will not detect it!

    The Terminal Ileum is where you absorb B12, and other irons.....appendectomy will cause problems with Folic Acid.  Your cramping and vomiting indicate a blockage.  I cant beleive youve been allowed to get this far without a firm diagnosis.

    Maybe you should consider asking for a small bowel MRI or even a small bowel barium enema (This isn't one for the bum, it goes up your nose and down your throat) -  its not a nice procedure but it has been the only procedure other than major surgery that diagnosed my Crohn's and although uncomfortable it gets results.

    I really hope you get some answers soon and can find a way to live with whatever it is that ails you. Stay strong 

    • jo19531
      jo19531 IndieHannah

      Posted

      Hi thanks for the reply. Saw the consultant today and she said my calprotectin levels were high indicating IBD. Now its a case of finding it. From my description of pain, she thinks its in the right iliac fossa? Is that where u think? I really need to do some reading up! I have to wait now for an urgent colonoscopy amd hydrogen breath test. If these dont pinpoint it I will b demanding an MRI. Ive had enough :'(
    • IndieHannah
      IndieHannah jo19531

      Posted

      Bless you....I really do feel for you. It took many years of severe illness and virtual death twice before they diagnosed me.  and it wasn't because they didn't cary out any tests.  In fact, they did everything bar the small bowel barium enema and they were looking for Crohn's!!....because according to them its a young persons disease (despite its name!) and I was 21 when things got really bad.

      Sadly, because it took so long and was left untreated I had to have quite a lot of small bowel removed.....but its not all bad.  I became a stronger person and over the years have learnt to take a pro active approach to my health care.  I have always struggled to maintain a healthy weight, but years on and a few surgeries later the weight is stable, although my symptoms continue in many and varied ways.

      The good thing is you have a consultant....and therefore you can access their secretary and also their specialist nurse if they have one.  I would reccommend you ask for the specialist nurse for some extra support....they're so good with offering emotional support and helping you with your own care.  But whatever you do, approach your consultations like a meeting....have an agenda and be sure to cover all the issues that are troubling you.  and afterwards (if you've got the energy) write up some minutes on the outcome of each of your issues.

      If nothing else, it may give you a sense of having some control in an otherwise chaotic situation.  Its good to keep your own health record, one that only you have access to and one that you can refer to anytime.

      Anyway, sorry for blathering on and I hope you get something sorted very soon.

      Take good care

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