Could it be Crohn's?

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My 19 year old daughter was rushed into hospital on the 13th Dec with severe lower right abdominal pains. She underwent various tests and had an appendectomy although she didn't have appedicitis. She was discharged on Dec 31st and has never had a pain-free day since. She has lost her job and is confined to our front room on the sofa because she can hardly walk - if we go out she needs a wheelchair. I wondered if she has Crohn's - she seems to have a few of the symptoms when I mentioned it to a doctor he just said 'the blood tests came back ok'. Has anyone been diagnosed with this when their bloods were ok?

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  • Posted

    I'm really sorry to hear that ur daughter is suffering. This story almost mirrors mine. At a similar age I started with lower right abdo pains and had an appendectomy. Altho mine didn't lie right in my body, it wasn't infected. That said, I had had several admissions previously and been on iv antibiotics. I was discharged with no follow up but the same pain continued. I had rapid weight loss, diarrhea, vomiting but nobody bothered. I suffered the same symptoms for 20 years. I'm now 40 and still suffer the same pain and same symptoms. I've been back and forth to my GP hundreds of times and been told it's IBS. After a really bad summer last year I insisted on a referral. Ive now been told it could well be crohns and I'm undergoing tests. I would say keep taking ur daughter back to the GP. u could ask for a fecal calprotectin test. This looks for inflammation in the bowel. Mine came back raised so now I'm having other tests. Just keep badgering them and make them listen. It must be awful for all of u to see ur daughter this way. Good luck x
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    • Posted

      It rips me up - I feel so helpless. She's never had a stool test so I could ask about that. Thanks for your help.
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  • Posted

    It would have to be diagnosed by a consultant as I was treated for IBS for many years before being sent for CT on my terminal Iliem which showed the inflammation consistent with Crohns, even now I haven't been officially diagnosed, my tests are referred to as 'possible' Crohns so going to see a specialist is a must as it could be gall bladder? There are different levels of Crohns and I am a relatively 'newbie' myself so I hope somebody can help with more info, good luck
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  • Posted

    Hi Deborah, I went through a similar thing to your daughter. Lots of admissions to hospital only to be sent out and told I was constipated. I collapsed in agony when I was 25 and was rushed into hospital. They said it was appendicitis and took it out. While they were in there the doctors noticed that things weren't right and diagnosed me with Crohns. I had no treatment for years. After a couple of really bad flare ups things died off and didn't bother me again until 8 years ago. It came back with avengance and after spending a lot of time in hospital I ended up having most of my intestines removed and part of my bowel. I hope your daughters doctors find something to help her, treatment has really advanced in the 34 years since I was diagnosed. The best bit of advice I got was put off surgery for as long as you can because once it starts it carries on. Saying that I'm managing pretty well now my medication is sorted. They need to do blood test to test her crp levels, it'll show up any inflammation and give them an idea of what is causing it. I hope she feels better soon x
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    • Posted

      Thanks for your reply. We were told her crp levels are normal - but is it possible for them to be normal and for her still to have Crohn's? The level of pain she's in and the length of time she's been suffering surely can't be 'nothing'?
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    • Posted

      Crp levels should be raised if it's a flare up but when things are quiet nothing will show up. Have they tested for ulcerative colitis? Keep on at the doctors to find out why she's in pain. I know from experience that sometimes they will fob you off but eventually you'll come across a doctor who is curious enough to check absolutely everything x
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    • Posted

      They've done an ultrasound scan, an MRI, exploratory surgery, an appendectomy, blood tests and something similar to a colonoscopy (but doesn't go as deep). She's having another ultrasound (which she's dreading because her stomach hurts to touch) and has seen an orthapaedic consultant as she fractured a bone in her spine last year and they're seeing if there's any connection. It's all very frustrating.
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  • Posted

    Hi, Deborah,  

    I'm sorry to hear your daughter is still suffering, I had a similar experience, I had suffered with stomach cramps and pain for years everytime I went to my GP I had blood tests done which came back clear, I continued to suffer until 4 years ago I went back to my GP explained my situation that I had bloods done before to check for  and everytime it came back clear, this time he didn't do bloods he referred me to a Gastrointerolgist and told me if a blood test comes back normal doesn't mean that there is nothing wrong, I had a colonoscopy done in February 2011 and diagnosed with Crohn's In March 2011, I was put on Pentasa SR. 2tablets 3 times a day, I continued to have good days and bad days, I had a fistula stricture in my small bowel, and they said I needed surgery, I had surgery right hemicolectomy 20/3/15 to have the damaged part removed by keyhole surgery, when I came round the surgeon told me that aswell as the part damaged in my small bowel they took part of my large bowel and my appendix out as they were inflamed, still recovering but on the mend.  Please don't leave it to long, keep at the Gps to be referred to consultant. Hope this helps.

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  • Posted

    I started with the same problem when I was 19, I had many a week on the settee not being able to eat anything and could just about keep water down. They thought mine was my appendix but that was one of my GP'S then another one in the surgery tested my feet and got me straight to hospital where they did a scan with a barium meal, that found the crohn's, I to was then sent home and was admitted to a different hospital where a professor did my surgery, if they hadn't found it I wouldn't have been here now as not only was it crohns I'd got a perforated access on my bowel.the signs are the same as mine not eating and drinking losing weight and in pain, you need to ask for these tests it's your daughter and obviously want her pain free. tell your doctor in a firm but nice way. good luck and I hope she'll be okay, and of course you as well because I remember how my parents worried so much.
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  • Posted

    Thank you for your replies - they've been very helpful. Although my daughter has had a few tests, she hasn't had afull colonsocopy or a barium enema or meal so maybe I should push for those. She has ZERO quality of life at the moment and hasn't done since the middle of December when this all started. I refuse to believe that pain this severe can be 'nothing'.
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    • Posted

      Out of the 3 the barium meal would probably be the best for her. I had a stricture which should up immediately so any swelling or abnormality would be picked up really quickly. I hope everything goes well for her, keep us updated x
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  • Posted

    Hi,

    I was diagnosed with chrons disease 3 years ago, i have had constant ulcers and inflammation since, not once did my bloods come back elevated always in normal ranges. So bloods can be an indication but are not the only think to go by. I believe I only got diagnosed with chrons, as I had Bupa through work.. A colonoscopy was what helped get my diagnosis as they can see what's going on inside.

    I also don't lose weight don't have toilet issues, I have lots and lots of horrible pain and look like I'm constantly 9 months pregnant...

    I've currently going through a flare up and blood test show normal ranges!!!

    Hope this helps :-))

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    • Posted

      Me too, my weight is going up and I bloat, my levels are constantly high and I had the most awful pains and cramps through inflammation and now on steroids , may have to have resection
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    • Posted

      That's really interesting as my daughter's bloods are always clear. They mentioned IBS but I really don't think it's that.
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  • Posted

    Deborah44777, I have Crohn's as have my 4 children and 2 Grankids are under investigation. With similar pain to ur Daughter, 1 of my Daughters was not diagnosed till she was 19yr old and had an Appendectomy (nothing wrong with the Appendix) In which her Bowel was punctured. They never discovered the puncture till 6 days later, (although in HDU), by which time my Daughter was rushed 100miles to a City hosp to have surgery. She had to have her large bowel removed and had to have a Colostomy. This was all after 11yrs of investigations to get a diagnosis. I don't want to scare U or anyone else, but I accepted everything I was told and NEVER pushed! My advice to Everyone now is Question, Question, Question!!! My Daughter is now 36yrs ol, on the right meds and had her Colostomy reversed........ So there is always Hope!!!!
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    • Posted

      Thank you for your helpful and encouraging post. My daughter continues to worsen and has just been in hospital with severe gastritis caused by all the pain killers she's taking (she had never been given anything to protect the lining of her stomach).

      The whole thing is hugely frustrating for both of us.

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