Diagnosis, can't stop worrying!

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. I have been having stomach issues for 5 years now since I had my gallbladder removed. Over the past few months what I believed to be IBS has got steadily worse, I am now struggling to control my bowels some days but other days I feel as though there is some sort of blockage there and I can't go at all? I am now in constant pain and have lost all appetite, constantly feeling sick and have lost a stone in weight.

The pain became so bad at the weekend my husband took me to A&E where Crohns or Ulcerative Colitis was discussed but I need a colonoscopy so they sent me home and will send me out an appointment for that within the next 12 weeks.

I am just so fed up feeling like this, I work full time and I am a mum to 2 small children and I could curl up in a ball every day, I eat because I know i have to not because I want to, I'm in so much pain afterwards my stomach constantly gurgles and I can't stop belching and have tight pains around my chest (I have already been diagnosed with a hiatus hernia but it is a lot worse and my medication doesn't seem to help anymore)

I was just hoping for some advice or help on the next steps, I'm so worried and have convinced myself there is something more sinister going on?

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8 Replies

  • Posted

    Hi 2littleboys,

    At first, do not worry and try to think positive. Eat small meal and chew slowly. I think you better change your medication. You should talk to doctor and ask him to have Nexium which is very helpful for me. You should stay away from diary food and do not be stressed out. It will make symptoms getting worse. Think of your children and you have to be strong for them. Go to doctor and ask him to give you different description.

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  • Posted

    Hi, First of  can I say that I am sorry to hear how you are feeling. As have said many times on these forums it is appalling how long it is taking to diagnose these problems.

    ​I know that are a lot of complaints of the gut that can similar symptoms. I am firmly convinced that IBS is just somthing that they come up with when they are not sure what it is. Once again as I mentioned to other forum mrembers I have suffered from crohns for over 52yrs/ and at that time when there was even less known about crohns I was diagnosed reasonably quickly. suspected as having appedicitis and was admitted into hospital to have the removed. It was during this procedure that they found that I was also suffering from crohns. which at that time I had never heard of.  Much later on I also,,like yourself, had me gallbladder removed. It is only recently that I saw a write up stating that a l.ot of people suffering from crohn end up having to have their gallbladder removed.​ I think that it is fair to say that crohns can somtimes affect other parts of the gastrict tract. 

    ​The fact that they are making youn wait 12 weeks before your next hospital test

    ​in order to get a diagnosis. just shows that they do not really appreciate what crohns sufferes are going thriough.

    I sincerly hope that you get some answers soon so as they can start treating you with the right medication.  keep me informed of your progress.

    .

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  • Posted

    Oh what terrible stress for you.....a bloody nightmare!!!

    Can't help thinking maybe you have bile salt malabsorption after gall bladder removal.....it will make it almost impossible to have a solid pooh, diarrhoea is constant, relentless and very very painful. A medicine called Colestyramine is usually given. It's a powder dissolved in water and can help immensely.

    But your other symptoms sound very Crohnsy and like you may have stricturing, a narrowing of the intestinal wall. All serious but treatable with diagnosis.

    I know it's really hard not to worry so I won't say that....just rest when you can, be kind to yourself and trust that treatment will happen.

    Hannah

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    • Posted

      I just wanted to say thank you for the post. I finally had my colonoscopy on Thursday and you were right it is BAM. I am so glad to finally get to the bottom of this and start medication and hopefully get back to feeling normal.
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    • Posted

      I'm so glad you've got a diagnosis after all this time and hope that the medicine helps. I suffered with the exact same thing after a bowel resection and the colestyramine is now an essential everyday medicine.....some days it takes a while to kick in, but has generally made life much easier.

      Here's to being able to eat and venture out with a little more confidence.

      Hannah x

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  • Posted

    I do have Crohns (finally diagnosed 2014) & had surgery a year ago as I had strictures and a blockage caused my bowel to perforate. The waiting game is horrendous, I really sympathise. I had years of suffering & tests before I was diagnosed. I would suggest that in the mean time you keep food simple. Try looking up low residue diet.

    Since my op I have had horrendous bloating & wind which gurgled constantly but worse as the day went on. A few months ago a chance comment from a friend made me look into lactose intolerance. My symptoms fitted so well that I have switched to lactofree milk & other products and have just started using lactase supplements when I want to eat something the same as the rest of the family. I have also reduced the amount of wheat products I eat. It has all made a huge difference & my GP has been supportive of me trying it all . I am taking no meds at all at the moment.

    Good luck & try & stay calm. Getting worked up doesn't help - buscopan might though, used to swear by it to relax my tensed up cramping gut!

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  • Posted

    As with other people who have commented, I hope you get answers very soon.  The stress and worry does not help the symptons.  Both my Brother and I suffer with Ulcerative Colitus, him a lot worse than me, and I feel diet plays a large part in all these illnesses as does stress.  You must monitor all that you eat and how you feel stress/worry wise on each day and compare with how you feel each day. Things will begin to show up.  With regard to the colonoscopy, that is nothing to worry about (easy said than done) but honestly there is nothing to worry about and just think at the end of it hopefully you should have answers and you should be able to get medication etc to help.  Medication takes time to sort out aswell as everyone of us is different.  What I take compared to what my brother takes is totally different but does the same job, so don't get disheartened if your first medication does not work.  Just a few pointers which I hope help you and there is light at the end of the tunnel believe me.  Stay positive and as stress free as you can with two little ones to care for.  Good luck.

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  • Posted

    Sorry you are so poorly, especially with a family to look after too. i was thinking exactly the same as indiehannah - poss crohns or bile acid malabsorption(bam). i have bam & am on the meds that indie mentioned which really help to control it. you can have a simple sehcat scan to diagnose this condition & it is possible to have this even if your gall bladder has been removed (the gall bladder was just a storage tank for bile acid). if too much bile acid reaches your bowels, it causes abdo pain, urgent frequent diarrea, & sore rectum/anus - the main symptoms. i would ask your gp to refer you for a sehcat scan (if you are not currently under gastroenterolgy dept as hospital yet) to exclude or diagnose it , as if you are positive it can very successfully treated with colestyramine sachets(prescription med). xx

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