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Does anyone know which blood tests should be done annually to check I'm in remission?

Posted , 7 users are following.

Carolla
Carolla

I've been a Crohn's survivor for 32+ years, was operated on 32 years ago and had slightly more than 3ft of bowel removed.  Since then I've had B12 injections three monthly but very little other medication.  There weren't a lot of options available to me then because I have a drug allergy.  I appreciated how lucky I've been over the years, keeping as healthy as I can and being soooo careful with my diet.  For the past 16 years I haven't been seeing a consultant, but relying on annual blood tests at my GP's surgery.  Last week I was totally thrown when seeing a different nurse who only intended to do a blood count, told me checking my B12 levels wasn't necessary and didn't actually get enough blood out of me anyway, she had three attempts.

I'm seeing my GP this week but has anyone any idea what blood tests should be done, are there any newer ones used for screening that I would be wise to ask about?

I'm aware that I'm getting older and I'm not a fit as I was and now I'm feeling anxious since my visit to the docors surgery.

1 like, 17 replies

17 Replies

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  • thi20955
    thi20955 Carolla

    Posted

    I suggest you should go to another doctor to have your annually blood test. The nurse did not want to do the job. How came she can not get any blood from your veins. Unbelievable.
    • Carolla
      Carolla thi20955

      Posted

      I've been turned into a pin cushion in the past having blood tests taken, but the nurse I normally see who's good at it was away, I didn't know this one.  I'm planning to check what was tested and what has been missed off.  I get on fine with my GP, but he's so busy.

  • patricia04797
    patricia04797 Carolla

    Posted

    I can't believe how callous the medical profession can be sometimes, it's like russian roulette regarding who you get!

    I would see your doc and tell him because you only have annual blood tests, you would like the whole range of tests done. B12 checks are just as important as haemaglobin and ferritin level checks for people with Crohn's. If they are awkward about it at all, like thi20955 suggested, change your doc.

    .

    Wow, 32 years and still going strong! Well done and good luck with the doc

    • Carolla
      Carolla patricia04797

      Posted

      Until now I've had no doubts about the blood tests and the nurse I usually see is brilliant.  I get on fine with my GP and I'm happy with the surgery; but recently they're busier because another surgery has closed and we're also in a rural area and with a lot of foreign workers so It's busier than ever.  A lot of new faces at the surgery.

  • decndor
    decndor Carolla

    Posted

    Like your self I have suffered from crohns for a long time. 52 YRS this year to be exact

    during this period I have had two bowel resections and several other related operations.. But I still have my annual check up with my gastrology consultant. where blood test are taken, and it is through these blood test that several problems have been identified and the appropriate treatment carried out.out.

    I cannot understand why you are not having these annual check up's with your consultant. Because if your check up's are only carried out by your doctor then it will take longer to get treatment if problems are diagnosed. I have joined my local Crohns & Colitis society. Where you meet up with  felow suffers and where you can sometimes get better information than from doctors or consultants. If you are not already a memberand are interested in this, you can find the address of your local group on-line, and believe me it is well worth considering.  In fact I am attending one of our monthly meeting today. keep me informed of your progress

  • looloo43
    looloo43 Carolla

    Posted

    Hi Carolla. I'm no doc, but have had colitis & other bowel issues last 4yrs so know a bit about it. with crohns, If it were me I'd be making sure they did a full bloodcount to check particularly your kidney & liver functions (if you're on meds), & any other areas that could suffer from malabsorption problems from your small bowel with crohns., eg, your vit b12, calcium, magnesium, vit d, folate, iron.  hope this helps hun. x

    • Carolla
      Carolla looloo43

      Posted

      Thanks for the info, I know they used to do kidney & liver functions, but I don't know about calcium, magnesium, vit d. etc, I'll take a list.  I hope your problems are sorted and under control

  • sheila51371
    sheila51371 Carolla

    Posted

    Hi Carolla, 

    I am sorry you have experienced a very unhelpful nurse, who was busily trying to cover up her own inaptitude by dismissing the need for a blood test.

    Of course it is important to check that your B12 level is fine along with the test which shows the level of infection in you, which is what you rightly say measures whether the Crohns is still in remission.

    When you go to the Doctors this week you must say what a bad experience you had to your Doctor. I also come up against people unable to take my blolod causing severe bruising. Take a note of the nurse who is more experienced. The use of butterflies these days has helped with people like you and I who don't give up blood easily. You just need someone experienced who you are confident with.

    I have had Crohns since I was 21, now 71. There have been good times and extremely bad times but at least I am still around.  I expect you will have also been treated by Steroids and long term use brings on bad problems with Arthritis etc.So blood tests are extremely important.

    Anyway, I wish you well and would like to see you stand up for yourself and not let a nurse, who was unable to do her job properly knock your confidence.

    If she had had to live with Crohns she would have probably become very sorry for herself, because as you will also know it is not a wonderful complaint to have.

    Be bold, dont be embarrassed and tell the Doctor what happened, the nurse needs to be told that her attitude was not helpful and affected your confidence.

    Best wishes and I will keep my fingers crosses for you to give you strength to stand up for yourself, let this mark the start of a new you.

    Sheila. 

    • Carolla
      Carolla sheila51371

      Posted

      Thank you so much Sheila.  I'm now 66, but I haven't got a clue how long I've had Crohn's.  I  become tongue tied around doctors, but I have got a lot of will-power.  I'm not a victim or a sufferer, I'm a survivor.  I chose to take as little medication as I could years ago, partly a drug allergy that was nasty that frightened me.  Sadly I had a very unhelpful consultant who wasn't interest in how I was keeping healthy, just why wouldn't I take his drugs.  For the first year after my op, I made a pint of yogurt a day and ate it with just about everything.  Weaned myself back onto food slowly and went to a healer who didn't pretend to cure the incurable, but she helped me accept it and gave me the oomph to move forwards and not wallow in self-pity.

    • sheila51371
      sheila51371 Carolla

      Posted

      Hi Carolla. I am pleased to see from your reply that you have managed things in your own way. Unlike you, I had a very good Medical Specialist who gave me a lot of confidence, but certainly did not force any tablets on me, especially not the very heavy stuff that is being used these days. Did you know that a part of Crohns is also to have a lot of allergies, which I have to say started whilst I was very young and then had the misfortune to catch dysentery whilst I was on holiday in Spain which of course brought about the full blown Crohns. Like you have said in your note I have suffered dreadful consequences from some drugs, which have always tended to act like I have taken poison. Anyway enough of that. I think you were very clever to sort out the yogurt to help you. Do you know that it was not until I had a real problem with a very nasty poisoned leg, two years ago now which saw me having to take massive doses of anti-biotics everyday that I was advised to get the type of yogurt you are talking about to try and re-address the balance in your digestive tract. So going with your own feelings about what to do was brilliant and in actual fact you were ahead of the game at that stage.  I know you have told me that you become tongue tied with the medical profession, but you know if you asked them if they could cope with Crohns especially with a colostomy, which I had to have done when I was 45, because they thought with the constant ulceration it would attract Cancer, they would tell you No, so really you have nothing to fear from them. but I agree some are very pompus. Good luck when you see your Doctor, remember we are all behind you. because we have all suffered in different, yet similar ways. You are a member of a very exclusive club, and if nothing else we are hear for you.  Best wishes  Sheila  
    • thi20955
      thi20955 Carolla

      Posted

      I am in the same boat with you in term of medications which made my symptoms worse. After the second time changing the mediine, I decided to stop and eat yogurt three times a day and mix with probiotic. I also have cabbage pickle which now help me in remission. Just worry how long, I hope it would work well for us in the long term. I also wonder during the remission do you develop any mouth ulcers. I do have it. How to cure it quickly?
    • Carolla
      Carolla thi20955

      Posted

      Hi

      When I was younger I had lots of mouth ulcers and abcesses under my teeth, I had several teeth out.  I have a real phobia about dentists.  The one I have now is eccentric but very good.  She explained a little about how Crohn's affects your mouth saliva, it makes it thick and sticky because there is a tendancy to dehydration, that encourages bacteria to grow.  It help explains why, although I always looked after my teeth, I had so many problems.

    • thi20955
      thi20955 Carolla

      Posted

      Thanks, Carolla. You mean the saliva causes mouth ulcers. If so how can we make it thin? In Wiki google it said I should take antacid tablet but the antacid will make it dryer am I right?
    • Carolla
      Carolla thi20955

      Posted

      She didn't say it caused mouth ulcers, but she did suggest that, because I was getting mouth infections, that that might be a reason.  I don't take antacid tablets, possibly because I chew my food well and I graze little and often during the day.

  • Loudnoises
    Loudnoises Carolla

    Posted

    I'm sorry you felt that the nurse wasn't helpful. Sometimes it can be difficult to get blood from a vein especially (sorry) from the older client. I'm sure the nurse felt bad.

    They don't normally check b12 levels once your on b12 as the results won't be valid.

    Normal a fbc, u+e, cal and liver function would be done as these are the ones which would pick up any problems. If you are over 70 you should have an annual check with an assigned gp anyway.

    I hope this helps.

    I have had crohns for 25 years and have had 3 lots of surgery the last being very recent. I am on mercaptoepurine so get checked 6 weekly.

    I hope you remain well.

    • Carolla
      Carolla Loudnoises

      Posted

      Hi, The nurse I normally see has no probs, it was just this one.  I have joined the grey brigade, but I don't feel old. 

      Kidney, liver, fbc are always done, but I thought B12 was still checked.  I'm stupidly getting over anxious and I'm getting joint pain and stiffness.  I reckon I'm lacking something.  I checked out some vitamins, it might be vit D, I have been craving sweet & salt very much over the past 6 months.

      I don't even know how much bowel I had removed 32 years ago, I thought 2 ft, my husband reckons it was 3ft 6in.  I was lucky my gut healed the way it did and I've coped without medication but been careful with food and drink.  I just don't want to crash because of something that could be identified by a simple blood test.

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