Ulcerative colitis or crohns- anyone with experience ?

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Permalink Reply by Sara B on February 8, 2012 at 20:42

Emma,
All i would say is, DON'T PANIC. easy to say and hard to do i know. A few questions, are you under a good gastro pead? WHich hospital are you at? have you requested a second opinion? What is the next step? Are they planning to scope?
Sorry for all of the questions, but I know someone will ask them if I don't.
for what it is worth, in your shoes I would be asking for a second opinion pronto, I am not sure if you are in the Midlands but I know there is a guy in Coventry called Prof Simon Murch who Dr Shah reccomended to me for my toddler, as I am struggling with getting her seen on the NHS. You can get a GP referral to him, or if your consultants will refer you to gt ormond st, they may be able to give better answers.
I hope there is a grain of something useful in there for you. Big big hugs. Xx

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Permalink Reply by Sara B on February 8, 2012 at 20:44

emma, I now see you are in south devon so the above is not a huge amount of use. But I will gove someone else a nudge to see if she can offer you any advice. Xx

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Permalink Reply by emma penman on February 8, 2012 at 21:07

Thankyou for replying! We are under general paed but have pushed for gastro paed and now being referred to a gastro paed in Bristol but don't have much faith in them at the mo. We are looking at endoscopy as the next move, is this what you meant by scope? How old is your lo? Can I ask what they're symptoms are? My lo has everything associated with the reflux but isn't a vomitter any more, things have moved focus more to the bowel and may have diahorea up to 8 times a day with alot of mucous then the next dark greasy small black poos, bloating, skin rashes, awful flatulence, pain, arching, awful nights squealing and tossing and turning waking up to 7 to 10 times grunting, holding breath, straining and farting. ( the probe showed each tine this happened she was having reflux). It's all vert difficult when I feel like my lo is the paeds guinea pig x 

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Permalink Reply by Beverley on February 8, 2012 at 21:16

Just read your next post. Sounds extremely likely to be allergic colitis as Sarah says. If they do an endoscopy insist on a colonoscopy too. Endoscopy will only show upper symptoms and not the colitis.

Also, know that guinea pig feeling. Not good!

X

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Permalink Reply by Kiwi Lover on February 8, 2012 at 20:59

Hi Emma, I also have a 14 month old with reflux and cmp/soya/egg/wheat intolerance, and am also in South Devon! What hospital is your LO being treated at? What were the results of the pH study?

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Permalink Reply by emma penman on February 8, 2012 at 21:12

Hi we are being seen at the RD and E? How about you? 

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Permalink Reply by Kiwi Lover on February 8, 2012 at 21:31

We are seen at Torbay and have a lovely general paed, but she has admitted to being at a loss with my LO and she has been referred to Bristol. We saw Dr Basude there last Wednesday, and found him very thorough, interested and knowledgeable. He has booked her for an endoscopy and a sigmoidoscopy next month, and is hopeful of getting her on more meds and tolerating small amounts of her problem foods. Have you tried further restrictions? 

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Permalink Reply by emma penman on February 8, 2012 at 21:42

That sounds promising my paed flippantly made the comment that he's drawn a blank!! Then my lo got worse and he now just throws tests at us but finally he thinks he needs the gastro paed to look at my lo!! I will find out the name and hope we have a similar experience to you. Did your lo have a probe? What were the results? How about the barium swallow? My lo has no cmp or soya in her diet bit dietitian said not to restrict anything else before we have given the nutramigen a chance to make a difference! Ha ha! What restrictions did you make? 

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Permalink Reply by Kiwi Lover on February 8, 2012 at 22:00

I think all the gastros at Bristol have a good reputation, I'm sure you will get good help there. My daughter had her pH study back in August which confirmed the reflux. She refluxed nearly 300 times in the 24 hour period and spent 17% of the time under pH4. Her barium swallow was normal so she was diagnosed with allergic reflux. She then had allergy tests which were negative to all the foods we have identified as triggers. An allergic gut was then mentioned and we got the referral from there. She doesn't have dairy, soya, wheat or gluten, and we give oats, tomatoes, berries and meat in small quantities and is reasonably settled. I would think your LO needs both ends looking at and some more removed from her diet, poor thing x

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Permalink Reply by Sarah on February 8, 2012 at 21:01

Hi Emma,

What led the doctor's to query Crohn's/IBD? There are some fairly simple blood and stool tests that can indicate crohns but diagnosis generally requires scopes and biopsy.

Statistically it is MUCH more likely to be allergic colitis - which is the condition that many of our babies are struggling with. That can be managed through diet and medication and the majority of children will grow out of it between the ages of 3 and 7.

Crohns is obviously lifelong, but please be reasuured that it is highly unusual for Crohns to develop and be diagnosed earlier than 15 years old... and it usually develops in early adulthood. Under 15 years it is 1 in 100,000 likelihood and the younger the child the less likely it is, so please don't panic. 

Trust the doctors - they'll sort your LO out honey. Next steps will be colonoscopy which is nothing to fear.

I have a very good friend with Crohns who wasn't diagnosed until he fell severely ill at the age of 31. Now his symptoms are controlled wit diet and medications, he leads a completely normal, healthy and happy life.

I hope that helps. xxx

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Permalink Reply by emma penman on February 8, 2012 at 21:18

Thankyou for the advice its reassuring and helps me to keep level headed about it all. I suffer with colitis and recognised similar yet not the same symptoms in my lo and they are only now taking there investigations further now that she is suffering even more. The probe showed the reflux and confirmed that as her mummy I do know something as everytime I had said she was refluxing tge acid indicators confirmed this. I was starting to think I was going mad! X

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Permalink Reply by Beverley on February 8, 2012 at 21:12

Hi Emma,

My LO Douglas was diagnosed with ulcerative colitis at 7 months old, or, more accurately he was diagnosed with Eosinophilic (allergic) colitits but his colon was ulcerated so essentially the same thing I would have thought, although perhaps you can have ulcerative colitis without it being Eosinophilic. He had a colonoscopy and biopsies. The camera from the colonoscopy showed the ulceration and the biopsies picked up the presence of the allergic cells (eosinophils). When we went for the results, the guy who performed the tests said Douglas had something very rare and might have crohns or inflammatory bowel disease but when we saw a more senior Gastro paed he said no, not either of those but Eosinophilic colitits which is a kind of EGID.

From memory I think I may have suggested that your child might be reacting to foods beyond compi and soya. I think you have horrible sleep but I haven't gone back over your posts. Douglas had terrible sleep, reflux and mucousy poo before he was on a Neocate only diet and now these symptoms return if he eats anything other than butternut squash and potato. It may be that your LO is similar and is experiencing painful colitis from reactions to other foods.


I don't know how they diagnose crohns in babies so can't help with that.


What are thy proposing to do? Presumably they will look into doing a colonoscopy?


I hope that helps a bit. If you want to ask more, feel free. The good news is that if you can get a clear diagnosis you can get better treatment and hopefully some sleep. It's a shock though, I know, to go from thinking your child has reflux to worrying that it might be something else. Nothing is confirmed yet though and I would seek a second opinion if you don't feel confident. As I said, only the senior Gastro in Sheffied new what Eosinophilic colitits was. I have no idea unfortunately why he ruled out crohns or IBD. Presumably because of the eosinophils.

Big hugs to you.

X

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