Hi. My 15 year old daughter was diagnosed with Crohn’s back in 2007 when she was just 9. She has had quite a few flare ups and had a limited right hemicolectomy 2 years ago. While her bloods at the mo seem quite normal, after any sort of stressful situation she is left with excruciating pain for a week or so. She says it's comes in waves and feels literally like someone’s stabbing you. Along with this she feels so tired, depressed, isolated and generally rubbish. The doctors say short of opening her up again there’s nothing really that they can do. I am not accepting this! There just must be something that will help. Does anyone else suffer like this and if so how do you manage it? Paracetamols don’t touch it and Co-codamols bind her up. She has missed so much school that this September she is going to have to repeat Year 10, if it continues as it is now she won’t even be able to do that. Any advice, hints or tips would be hugely appreciated as life is passing her by and she so wants to be ‘normal’ (her words ). Thanks in advance x
Daughter's blood work is normal, but she's still in pain
- Thread starter Sadmum
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Does she have a stricture? I had these problems too and they were not resolved until I had the bad part removed. Sorry, I know it is not what you want to hear. Strictures from scar tissue (prior surgery or other damage there) need to be cut out or I hear strictureplasty may be an option.
It never hurts to get a second opinion.
The other thing you can do is work on her stress level. Yoga, meditation etc. Good luck.
It never hurts to get a second opinion.
The other thing you can do is work on her stress level. Yoga, meditation etc. Good luck.
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how about a camera pill to see what is going on in there? Careful though, if a stricture it may get stuck
wow, thanks for your help. She had an MRI a month or two back and it didnt find anything abnormal. The have never mentioned the camera pill.
Unfortunately she cant swallow any liquid medicine however hard she tries so anything that involves that has to be done via an NG tube which is so so distressing for her. Viscious circle! Her consultant did wonder if she had adhesions from her previous surgery but i dont want to push it and get them to open her up if it isnt that. Its just so hard to know what to do! :ybatty: I have tried hypnotism and that hasnt helped her stress levels. Maybe we could give yoga a go!
Unfortunately she cant swallow any liquid medicine however hard she tries so anything that involves that has to be done via an NG tube which is so so distressing for her. Viscious circle! Her consultant did wonder if she had adhesions from her previous surgery but i dont want to push it and get them to open her up if it isnt that. Its just so hard to know what to do! :ybatty: I have tried hypnotism and that hasnt helped her stress levels. Maybe we could give yoga a go!
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I understand. Its bad enough when its yourself, but your kid would be the worst. My daughters are 8 and 10 and I just pray they don't have it too. There is a parents support subforum here if you want to talk to other parents.
I am not sure if an MRI would show adhesions. They found my blockage with a ct scan at the hospital.
I am not sure if an MRI would show adhesions. They found my blockage with a ct scan at the hospital.
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I am not certain. I think CT is more radiation so they try to limit use. I think MRI is done with high magnetics
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While bloodwork is helpful in finding out what is going on, it doesn't tell the entire story. I've had normal bloodwork but then a colonoscopy showed a lot of inflammation and ulcers. I've also had a lot of problems in the past from tiny ulcers that only showed up on a pill cam. What does her doctor say?
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Normal blood results don't mean anything in about 25-33% of people with Crohn's me being one of them. I had a normal CT and normal bloods 2 weeks before a perforation.
It might be worth checking a faecal calprotectin, it is a more reliable test for ongoing bowel inflammation. It wouldn't detect a non inflammatory stricture though. An MRI enteroclysis or small bowel follow through would be needed for that- and the contrast put through an NG tube placed at the time of the test.
It might be worth checking a faecal calprotectin, it is a more reliable test for ongoing bowel inflammation. It wouldn't detect a non inflammatory stricture though. An MRI enteroclysis or small bowel follow through would be needed for that- and the contrast put through an NG tube placed at the time of the test.
