Early mild crohns

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Hi I am having a dilemma with 13 year old daughter. On 3/5/2016 last year my daughter got a sudden onset of abdominal pain. Was a stabbing pain in lower right abdomen in line where terminal illieum is. Was susspected appendicitis but after ultrasound decided it wasn't.

The pain has continued every day for last year apart from 3 weeks after she completed a six week course of modulen IBD.

In June she received a endoscopy and colonoscopy and biopsys which showed nothing. She has had 3 raised calprotectin one was 121, 330, 721. So not overly high but was enough to allow them to test. Then in November the fine an MRI scan which showed inflammation mild which could have suggested early crohns. She started modulen in January it took into week 3 to notice a change in pain she completed the other 3 weeks where it continued to reduce. Then two weeks after completion she was totally pain free. Then 3 weeks later it all flared up again, reflux, stabbing pain in chest which was heartburn but was suggested by own gp it was costochronditis. We repeated two more stool samples for calprotectin which came back 35 and 13. So now they suggesting ibs. She responds to no pain relief they only thing that reduced pain was modulen. Can you get false negative calprotectin. She mostly suffers constipation with intermittent loose stool no blood. But not severe constipationas has a bowel movement everyday. They refusing to do further tests. Now she getting referred to pain clinic and therapist to manage pain. I would expect IBS to have some kind of relief and not a daily pain. At my wits end. Any advice welcome.

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  • Posted

    Cannot help with advice as I'm in the same dilemma with my daughter. Hers started 2 years ago in June, same pain in the same place. Her pain would sometimes get so bad she would be vomiting and pass out. She had her appendix out in that December which apparently wasn't the problem,but they found adhesions in her small intestine which they couldn't explain.

    So constipation and pain has caused many hospital stays and lots of serious pain killers.

    So long story short and multiple specialists, tests and scans later they cannot diagnose with crohns yet unless she has she has relatives with the same.

    We have just found out her grandmother does but haven't seen doctor since to explain.

    Good luck and I hope you get answers soon as it not fair at all on the children to go through his pain and not know what's wrong with them.

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    • Posted

      I know I just feel if they were so certain it not IBD why leave it a whole year to tell me. My concern is they won't do the pill camera to check the small Bowel where there could be a small patch and I believe that most crohns suffers with small bowel patches suffer constipation. She is missing school, affecting her mood. But the main thing is she doesn't respond to pain relief which makes me think if they don't give her a anti inflammatory she will be in constant pain.

      Yes that is one of the factors they can't give her a diagnoses as not a close family member has it. My brother has oral crohns. My 15 year old Neice has ulcerative colitis. Now neither of my parents had crohns so how can my brother have it and neither of my nieces parents have it.

      So goodness knows.

      The only stress and anxiety my daughter has now is the pain and the unknown.

      Highly frustrating.

      Thanks for you reply. Hope you get answers soon too.

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  • Posted

    I have just worked out my brother has oral crohns and they said that wasn't close enough for my daughter to have it.

    But I knew my mum or dad didn't have it.

    But my mum had severe multiple scerlosis which is an auto immune disease so could it be possible by daughter has inherited it without me having it.

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  • Posted

    Hi suz2104, sorry to hear your daughter is struggling. Also apoligoze in advance if this is long. I am 16 years old and have been diagnosed with crohns diseade sense 2nd grade. For years I struggled to find a diagnosis for my symptoms. I visited many different doctors and specialists, none of them ever discovered what was wrong with me for years. I traveled all over the country going to top doctors and clinics, recieving all kinds of tests and went on all kinds of diets and medications that never worked. Finally in around 2nd grade I went to a doctor at Boston childrens who ruled out 3 different illnesses I could have. These were ulcerative colitis, IBS, or crohns disease. Also at the time I was dealing with significant stabbing stomach pains (on both right and left of stomach) more than ever. (sorry for the tmi but im trying to explain in detail so maybe it will help you or someone else) Then all the sudden when I went to the bathroom A LOT of blood would come out with my poop. It was very painful and I could literally sit in the bathroom for an hour at a time (many times a day) having almost diarrhea (more like just unformed poop), and a lot of blood would come out. We went back to the doctor and he confirmed I had an ulcer on my colon. He then figured out I either had Ulcerative colitis or crohns disease, and confirmed I was having a severe "flare". We tried a lot of different medications and of course I had multiple check ins with the doctor getting all sorts of tests done. They also scoped me. After a many medicines, diets, testing, doctor visits later we eventually were able to ease my flare until it went away and they precsribed me a medicine called pentasa. I still take this medicine now (500mg each, 6 a day). I forgot to mention I also dealt with moderate to severe acid reflux and heart burn starting at a young age, not sure if its realted to crohns or not. The medicine I take for that is ranitidine. Up until around 5th grade I would ocassionally get mild to severe flares around once a year. Also in 5th grade I started getting inflamation in my hip joint (they didnt figure out what it was right away, but later figured out it was crohns related). This basically means that I was producing extra fluid that surrounds the bones and tissue to make the joint able to rotate. Because there was too much of it in my joint my tissue would slide out of place each time I made the slightest to biggest movement, when the tissure slides out of place my bones would rub up against eachother causing extreme pain. I could barely walk and when I did the pain was unbearable. Not going to go in to detail about this for the sake of whoever wants to read this lol. But basically things to look out for in your daughters symtoms would be a bloody stool (sometimes this isnt visible for it could be inside the poop and the doctor would have to do a test to determine if there is blood), stabbing stomach pain (left side only could just be constipation), weight loss, joint inflamation, fatigue, and constipation or unformed stool. Any of those symptons could be mild-severe and would probably indicate that she has crohns or colitis. Throughout the time I was figuring out what was wrong with me a lot of doctors would say that nothing was wrong and refuse to do more tests as well. My advice would be to just keep trying to help your daughter no matter what and try different doctors until you find out whats wrong. The process can be long and tiring but eventually you will find a good doctor and get a diagnosis. I would also suggest trying to keep your daughter away from dairy and high acidity foods (terrible for any type of IBS and acid reflux as well), if your worried about her getting enough calcium there are plenty of foods really high in calcium just look it up. I hope this helps and good luck!

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    • Posted

      Thank you so much for your story. My daughter has also had knee popping out and back in. Also her hips. But doctor just said it was normal in teenagers. She has had on and off joint pain over last year. And before. She was referred to rhuematology middle of last year still no appointment so could be another piece of the jigsaw puzzle so thank you again for information. Definetly away to get second opinion.
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    • Posted

      No problem! glad to help. Im no doctor but I would defanitly say get a 2nd opinion. If the joint pain gets so bad that she can't walk I'd say bring her to the er, I had to do that a couple times before. If that happens make sure to tell them that she might have an IBD because when I first went they thought i was dying of an infection and kept me there for 4 days! They eventually figured out it was crohns related. 

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