Desperate for advice, please??

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Hello, i am 26 female. Last year August I started suffering with dihorrea, tummy bloating and garggling. Naturally like all people I put it down to a tummy bug or something I eat. As since birth I have suffered with constipation. After three weeks it wasn't letting up so I decided a trip to the GP. GP thought I had a gastric infection, I was sent for a stool sample and just a basic blood routine check. It came back clear, I was upset cause I was still suffering but they said there's nothing wrong. In The October I started getting awful indigestion to the point I couldn't breathe, bloating and serve constipation with mucus and puss in my stools. So I went back to the GP was told it could be IBS but gave me nothing to help. I decided to change GP as I felt they didn't care, I went to my new GP which they prescribed Laxido and mebeverine. It helped but the bloating and pain in my tummy was bad, then the meds stopped working. I was really poorly by January this year, the nurse saw me at the GP and said I think it's IBS. I explained to her I feel thinner like I'm loosing weight but how if im not going to the toilet but eating regularly? She said probably nothing but I will weigh you, to her borrow I had lost 6lbs in 6 weeks. Gave me some supposidries if I was still expirencing problems you must come back in two weeks as I feel you would then need a colonoscopy. Things got worse but the supposidries at least eased the issues, I found out I was 4 weeks pregnant I was so happy as my partner and I had been trying. But the constipation got so bad nothing was working, and due to being pregnant I was not to have a colonoscopy. My small intestines and colon was swollen on examination, so was given a different type of supposidries she believed has impaction of the bowel. I finally did one of the new supposidries and then began to have a tiny tiny show of blood. I knew instantly the baby was lost, I'd had an emergency scan two weeks prior at 8 weeks to confirm baby was alive and well & the heart beat was great.

We rushed to the hospital, had a scan at EPU to find baby's heart had indeed stopped. We then were told to go back downstairs to a&e to sort the next issue out my colon. To which the doctor said I can't do anything from an a&he plint view go back to your GP. I was so fed up!!!! I'd been suffering for so long lost my baby and still no one could help or look into much needed question why? & what is wrong?

I went back to the GP this time my partner came to make sure I got a referral and not be pushed about, to her reluctance she has referred me to the gastric team at our local hospital. It's taken then 4 weeks to get an appointment and I still have to wait another month again to be seen. Since losing the baby, my tummy gone back to the first issues I had. Constant going to the toilet, I'm eating well but losing 2lbs a week. I am not 7 stone 2, I get tummy cramps and bad indigestion. Some people I know personally who are related to doctors all said I think you have Crohn's disease.

I am just wondering, could it be Crohn's that I am having? It's been hell I feel like I am dying wasting away. Can't stop crying & the last few days I felt weak & so sleepy I just don't feel well at all.

Has anyone suffered with similar issues? And does it sound like I have Crohns?

Thank you so much for reading my story, sorry it's been a long one!

Zara x

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4 Replies

  • Posted

    Hi Zara

    Firstly, I just wanted to say how sorry I am at the loss of your baby, that must have been a really hard time not helped by being fobbed off by doctors!  It is so strange as my story almost exactly mirrors yours!  

    All my symptoms started about a year ago out of the blue.  Terrible diarreah, awful acid reflux, esophegal spasms, lost a stone in weight in a month and was literally a shell of my former self.  I knew something was not right at all but just like you had to go to and from the GP on a weekly basis and was continually fobbed off.  Eventually got referred to GI doctors at hospital - by which point I had also found out I was 6 weeks pregnant.

    Luckily I had a fantastic consultant, he ordered some initial tests such as stool sample - have you had your calprocten levels tested?  This is basically a stool sample that tests for inflammation within the bowel.  Mine was through the roof and from that he said he believed I had crohn's or colitis (my mum has colitis).  He wouldn't do a full colonoscpy but did an endoscopy and flexible sigmoidoscopy the very next day.  Both showed up nothing!  Luckily since then it has all calmed down and I feel more or less back to normal - apart from my baby which is due this saturday!

    I still have strong suspicions this could have all been crohn's - the consultant said it also as he couldn't look far enough into my bowel to see if there was anything else.  To me your symptoms sound a lot like crohn's but it could just as well be a very severe case of gastritis - the tiredness, weight loss etc is all very suspicious of crohns.  I know it must all be really hard for you but I promise it does get better

    Amy xx

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    • Posted

      Hi Amy,

      Thank you so much for your reply and kind words, Ive got to that point it's ok I lost the baby I will try again but I need to be healthy first.

      That's very frightening how similar what you have gone through to mine, I'm glad things are getting back to normal for you (can you tell me the secret?) hehe.

      I've just cancelled work, I don't have energy to move from my sofa & I'm a carer to disabled adults & my son is Autistic. I haven't been able to eat today, soon as I swollow it just gets stuck in my chest feel like I can't breathe. God I can't wait for April 29th for my appointment. I really hope they can find what it is, I know Crohns can be devastating for people butt there's some hope of medications & just finding the correct type. I so want to try again, it took 9 months to be pregnant. But the doctors are like no babies get you well first, i know that is the best sensible thing to do. But I can't help feel impatient waiting around. I think it's terrible how they allow some many to suffer for so long, before anything is done & found. The dad of bowel cancer 10 years ago, he suffered no one listened and it was to late. Four months later he passed. I think that's also playing on my mind... God don't let be the big C!

      I wish you all the best for your labour & enjoy that little one. I can imagine your very excited & at the point lets get he/she out.

      Take care

      Zara x

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    • Posted

      Excuse the spelling, I am just so tired. Which is so ridiculous considering all I've done today is sleep then laze about.

      X

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  • Posted

    God I'm soo sorry for your loss, and symptoms wise, I'm in the same boat as you. My g.p also did the same thing to me with not prescribing anything until my school got involved and came with me so I also didn't get pushed about. I saw a different g.p also who prescribed me laxido and mebeverine and I guess it worked for a while but all this week its stopped so back to square one. I find peppermint oil pills help a little, I use Colpermin ibs tablets from boots and take spasmonal for the spasms, as for the stool problems, I might try out a different laxative since the g.p's seem reluctant to help and waiting is ruining my life. Please try colpermin to see if it helps you even a little and keep pestering the g.p, its what I plan to do after my next calprotectin test. And it could be Crohn's but these things are hard to diagnose. The second g.p suggested ibs, Crohn's or colitis, nothing definite but yea, could be Crohn's. Wish you all the best
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