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12-10-2011, 10:01 AM   #1
dan207227
 
Join Date: Nov 2011
Location: Lincoln, England, UK
My Story

Hi All. I'm Daniel and 16 years old and I was diagnosed with Crohns just over a month ago. I have been on this forum for a few weeks now and have finally got the opportunity to write down my story.

As Crohns goes I consider myself quite lucky - I have never suffered from any bowel symptoms. In fact it was a culmination of a few small things that led to my eventual diagnosis. It all started about April last year when, after a week holiday with my friend, my Dad noticed a very slight swelling in my right cheek; at the time I thought nothing of it assuming that it would go down over the next few weeks. But after about two months I had noticed that it hadn't changed so I went to the Doctors to see if there was anything wrong. From there I was sent to see an orofacial consultant where I had biopsies taken from inside my cheek - these came back to show that I had orofacial granulomatosis. From here I was sent to a paediatric consultant who looked at this and other symptoms (weight and height dropping off and a couple of perianal skin tags (these had not been causing any problems)) thought that it could possibly be Crohns, so I went and spoke to a gastroenterological doctor who set me up for a colonoscopy and endoscopy. Although these procedures didn't show up any visual problems biopsies revealed very slight inflammation at various points.

From that I have been put on a 6-8 week modulen diet (Half way through so far - woooo!) and I am also on 4g Pentasa a day. Next week I am due to have an MRI to have a look at my small bowel.

I feel quite glad that it has been caught 'early' as such but was just wondering if there is anyone out there who has experienced anything similar?

Cheers
12-10-2011, 11:41 AM   #2
mikeyarmo
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Join Date: Feb 2006
Location: Toronto, Ontario
Welcome to the forum Daniel!

Glad you finally took the time to tell us a bit more about yourself. Even though I am glad you have not suffered too much with Crohn's, I know it i not fun to be on a Modulen diet. I actually have not taken Modulen before but have been on a meal replacement type diet before for a similar length of time.

I did not have the exact same experience as you did in terms of diagnosis, however the uncertainty of what I actually had and having to visit several different doctors is common to me and many other IBD sufferers.

We are happy to have you join us on the forum and I hope the rest of the modulen diet goes well. Please let us know how the MRI goes!
12-10-2011, 12:11 PM   #3
SnowDay
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Join Date: Nov 2011
Location: Ireland
Welcome Daniel. Its obviously never good news that you have a chronic illness, but people often go years without a diagnosis.

So it's kind of fortunate that they found crohn's from such minor symptoms (not at all trying to invalidate your sickness).

Anyway, keep an eye on your Vitamin D/B12 levels as they are commonly low in crohn's sufferers. Keep us posted
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Dx'd w Leaky Gut Syndrome in 08. Had eczema(autoimmune), chronic fatigue, asthma and suspected crohns(booked for an endoscopy).

Been on cyclosporine, currently on vit d3, zinc, probiotic, digestive enzymes, getting iv drips of vit C, B complex, folic acid, niacin and EDTA twice weekly and living on an all poultry diet. WANT CARBS
12-10-2011, 10:05 PM   #4
David
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Location: Naples, Florida
Hi Daniel, a hearty welcome to you. That's quite an interesting case you have! I'm curious what the intestinal biopsies showed specifically, do you know?

Thanks for joining and sharing your story. I can tell you're a very articulate person. I hope you stick around and take part here more regularly.
12-11-2011, 09:16 AM   #5
Angrybird
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Location: Cambridge, United Kingdom

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Hi Daniel and welcome. I had the more common symptoms of crohns so it does sound like you have a well informed doctor which was lucky. I have been on Modulen and this is the nicer of the liquids foods I have tried. Have they given you flavourings? I liked the strawberry and banana and I always chilled mine in the fridge so I could pretend that I was actually drinking a normal milkshake. With regards to your MRI have they said anything on the appt letter about havng to drink anything for the scan? If not call them to find out, I turned up for mine and found out I had to drink the same stuff they gave me for the colonoscopy prep. I had planned to go to work afterwards but after drinking that stuff it was a defnite no go. I hope it goes well and let us know how you get on.
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Angrybird

DX: Crohns July 2002
Surgery: Ileocecal Resection Sept 2011
Now:Tummy behaving itself and new mummy to baby Nicholas
Current Meds: 6-MP 75mg,B12 injections every 3 months
Previous Meds: Budesonide, Prednisone, Remicade, Pentesa,Hydroxychlorequine,Azathioprine (tried twice) and Methotrexate
12-11-2011, 10:48 AM   #6
dan207227
 
Join Date: Nov 2011
Location: Lincoln, England, UK
Firstly, thanks everyone for your kind words of support and don't worry will let you all know how everything goes.

Unfortunately I do not know the specific results of the biopsies - my parents might have a better idea but I cannot remember being given any specifics.

The modulen itself was a bit difficult to begin with mainly because I don't like milk (was hoping for a non-milk based diet but got modulen and learnt to cope anyway). I also found that I didn't like the modulen flavourings but my doctor told me that I could add crusha or nesquick to the drink instead and now I can tollerate it quite well. Also, with regards to the MRI, I have been told that I am not allowed anything other than water 4 hours before my appointment - and even then I have to be in the hospital an hour and a half before. Hopefully it should all go well.

Thanks again everyone and will let you know the results when I get them. Have a merry christmas
12-19-2011, 11:45 AM   #7
dan207227
 
Join Date: Nov 2011
Location: Lincoln, England, UK
Good news about the MRI - Doctor rang up today and they said that there is currently no inflamation in my small bowels. Also had the results of my blood tests come back normal with my inflamatory markers normal as well. Looks like the Modulen has done its Job: finish it on Thursday just in time for Christmas! Can't wait for food!Now just got to hope that I can stay symptom free!

Merry Christmas All!
12-19-2011, 11:51 AM   #8
David
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Location: Naples, Florida
That's fantastic Dan! WOO! Merry Christmas!
12-19-2011, 11:52 AM   #9
Angrybird
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Wahoo Congratulations!! Word of caution however - do not go too nuts at xmas no matter how tempting it may be, you don't want to undo all your good work
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