? UC or Crohns

[ThatRealDenimOP]

Hello,

5YO daughter has been having tummy pain on and off for a while- usually linked to constipation. A few weeks ago she was complaining daily and vomited twice so took her to the GP who did a stool sample.

he has now contacted saying her inflammation is high and he’s referring her to paeds. I didn’t ask the exact number but we are seeing him again next week for another matter.

He’s concerned she has Crohns or Ulcerative colitis. Obviously this is very upsetting as she’s so little. Her only symptoms are occasional tummy pain (never stops her activities) and this stool result. Her stool is lighter brown, no signs of bleeding and not loose.

has anyone experienced this and it not be IBD?

thank you

Did he say how high the faecal calprotectin was? If dramatic, then IBD is certainly a possibility, but if only moderately raised it could well be a red herring.

Thank you for the reply. No I didn’t ask when he rang as I was so shocked and she’s so healthy otherwise. Never fatigued etc I will ask him but his words where ‘ it’s hard to tell how high is too high in children but I’m going to refer her on to the paediatric team for an urgent referral and she should be seen quite quickly’

Better to be seen and reassured, than to not be seen and later wish you had been.

If you have her linked to you on the NHS app you can see the GP test results on there

I know I’m just now beside myself that she has IBD as even despite better treatments it’s so life changing for her at 5 🥹
I was hoping for some ‘oh this happened to us and it was nothing’, I guess 😞

We are in Northern Ireland and the Mycare app doesn’t allow us to link children without their team doing so

Nice guidelines are 0-50 = normal no action, 50-150 raised, repeat the test, 150+ high referral to gastro. So whatever results she's gotten it's going to be 150+ or gastro would reject the GP's referral. Nephew going through similar at the mo, he's 10.

Hi OP,
Your GP has reacted well ordering a calprotectin test and then referring for further tests.

We had ongoing symptoms and poor health, several visit to GP, paediatrician and two visits to A&E before a Calprotectin test was ordered with the result indicating investigations were needed. So much misery could have been saved by that test being ordered earlier for us.

I can't comment if your daughter will be diagnosed with an inflammatory bowel disorder of course but I just wanted to tell you that my son was diagnosed with Crohn's about a year ago and that diagnosis and subsequent treatment has transformed his health.

My son has gone from underweight, fatigued, nauseous and other unpleasant symptoms to gaining weight, having energy for a busy life, using the gym and his unpleasant symptoms 99% resolved.

A year ago I was too afraid for him to go on a theme park trip as he was too fragile for roller coasters etc, fast forward a year and he has just completed his DofE camp walking for 2 days with a heavy backpack without missing a beat.

Although it wasn't easy for us to get those investigations (which you have been referred for) since getting a diagnosis the NHS has been amazing and I am so, so grateful.

If your child does get a diagnosis of an inflammatory bowel disorder there are effective treatments and I don't think you can compare the outcomes of people diagnosed decades ago with the help children currently get from the NHS.

Sorry to hear about your nephew ❤️
what where his symptoms?

Thank you so much for sharing, that’s definitely a bit more reassuring. I’m so glad to hear your son is doing so much better and is thriving!

my worries are things like the initial liquid diet for 6-8 weeks as a 5 year old who has little understanding is going to be difficult 😞

My ds was diagnosed with an IBD in his teens, after he suddenly became extremely ill, with no prior symptoms. He responds very well to the medications and is generally healthy now. Ds lives an active and exciting life. He's taken up skydiving!

I don't know if it's different for young children, but ds did not have to have a liquid diet. He had no dietary restrictions, but was told to be very aware of what he ate, drank and did, so that he could take note of anything that triggered symptoms. Nothing does. Ds can eat and drink anything he wants.

The thought of your baby (of any age) being diagnosed with an IBD is horrible. But if she has it, the earlier she is diagnosed and treated, the better for her.

IBD is better caught sooner than later, some of my family were diagnosed is childhood others as adults. No one followed a liquid diet. UC is usually easier to manage than crohns. The treatments are improving all the time. I go easy on mushrooms and don’t eat spicy food anymore, I stopped drinking alcohol and go really easy on fruit juice. A sibling avoids tomatoes and curries but is fine with everything else
Inflammation can be caused by many other things including certain allergies and some bacterial infections.

The liquid diet is used as an alternative to steroids by most IBD peads teams. Its a pain, but doable for most kids, but I think it would be very challenging for a 5 yo.
The IBD team will screen your DC again with 1 or 2 more calprotection tests and the next steps would be a colonoscopy and endoscopy to confirm the diagnosis.
Before DS was officially diagnosed he had repeated tests of over 3000, but few other symptoms. He's had a hard and tricky road since, so I really hope that it's just a passing bug for your DC.

Thank you so much, I’m so glad your son is doing well! I think the unknown is dementing me, we are so lucky she’s energetic and healthy otherwise and is only having mild tummy pain at the moment. I’m sure it was awful seeing your son unwell ❤️

My son couldn't hack the liquid diet (which he was asked to go on for 6 or 8 weeks I can't quite remember) within a couple of days he was very down and struggling to keep the drinks down.

The consultant that asked us to try the liquid diet said it had a similar success rate for causing remission as steroids so they prefer it to avoid having to prescribe these.

When my son couldn't handle living on the drinks we negotiated with him and tried to get him to have a couple each day (say one for breakfast and one after scool) along with bland foods such as chicken and rice until his next appointment to review.

After some googling I found studies that suggested that part liquid diet still seemed to be effective (partial enteral nutritian) so that reassured me somewhat. The liquid diet even the couple of days that he did and then the partial liquid diet did seem to improve his symptoms.

At his next appointment with the consultant I told them that he couldn't do the liquid diet and if they required him to do it he would need a feeding tube. The consultant decided to prescribe him the course of steroids instead.

After confirming his diagnosis with endoscopy(?) and biopsies he is on a treatment plan of infliximab infusions.

Thank you for this
if it is indeed IBD we will have a road ahead figuring stuff out but hopefully then liquid diet can be avoided 💕

I need to contact the GP surgery tomorrow and ask what the level actually was. I’m sure it was obviously high enough for him to go straight for referral instead of repeating. What symptoms did your son have to get the test?

i’m so sorry it’s been a hard road for him, we all just want our kids to have as easy a time as possible x

Thank you,

what where your sons initial symptoms? My daughters is only mild tummy pain, wind and occasional constipation. She has had no bloody stool or loose stool.

Your poor son, we all know how hard dieting is as adults never mind having to take liquid for so long as a kid 🥹

did your son have to have a general anaesthetic for the endoscopy?

I'd say for a year or so he had lacked energy and been thin - just not thriving.

He had ulcers in his mouth - first a big one that required antibiotics but then multiple smaller ones that made eating painful.

He suffered some nausea and occasional tummy pain. The more we encouraged him to eat the more this escalated. It got to the point he was having days off school with nausea and fatigue.

He had offensive wind but never suffered diarrhoea.

We had seen the doctor who did blood tests. This showed raised platelets and they referred to a paediatrician. He had multiple stoole tests looking for infections coming back clear (but I didn't know about the calprotectin test and I am still sore the doctors or paediatrician didn't ask for it). I think what threw them off was he managed to put on a little weight (like a few pounds still putting him on only the 2nd percentile for weight) but making him eat more was making his symptoms worse. I think they were working under the assumption if you can gain weight it isn't IBD.

We went to A&E twice - due to tummy/back passage pain and vomiting. I was desperately hoping it might be a route to diagnosis and the second time - when they performed blood tests that were not OK it was.

At A&E I was told it was not really the place for my son's type of symptoms and replied that if my desperately underweight son (he had lost the weight he gained) can't keep his food down it won't be long until he is coming in in an ambulance.

I could have kissed the consultant on the ward the next day who told me that my son would need tests to confirm but from his history he was confident we would be looking at a diagnosis of an inflammatory bowel disorder - and there are very effective treatment plans. I knew finally we were on the track for help.

As you can see I carry trauma! So if your daughter does have IBD the vigilance of your GP has prevented her having to deteriate before getting help.

Yes it was a general anaesthetic for the endoscopy. Just a day case. After the prep for it (no solid food) he was determined he was going for a burger and fries after. When he woke up/came round/got dressed I thought never will he want to do that. But he did!

DS never complained of pain or loose stool or blood or any of the symptoms they ask for. He still doesn't, yet his Crohn's is poorly controlled despite huge effort and loads of drugs (and the drinks!) from his very wonderful team.
His diagnosis journey was indirect. He developed a fistula and then slowly lost weight and stopped growing. It was almost impossible to see at the time, but so clear in retrospect. Our GP sent us to the local hospital who referred to pead surgeon for the fistula who then referred on to the IBD team. It took over a year to get a diagnosis.

Bizarrely apparently Ireland (where i am) has the highest rate of pediatric IBD diagnosis in the world per capita. I'd doubt NI was very different. Plus side is there is loads of research and trials going on all the time. DS is in loads!

@turkeyboots
I'm sorry your son's symptoms aren't well controlled yet. It's so hard seeing your child unwell. I hope his health improves now 💐

Fatigue, vomiting, mixed constipation and diarrhea.

@Winter2020 thank you! Puberty and Crohns has been a horrible mix, really messed with the effectiveness of medication. Here's hoping it all settles soon.

I would take one step at a time and wait and see. A high calprotectin test indicates inflammation in the gut. The tests needed will give you answers.
My 19 year old daughter was diagnosed age 12 with crohns. She responded really well to medication and went into remission almost straight away. That was 7 years ago and she remains in remission. It’s not a cure but the disease is controlled.
She has had the most amazing 7 years. She didn’t miss a single day off school except for the odd hospital appointment. She got great grades in both GCSE’s and A levels. She has done a charity skydive and in general lived a very active life.
In two weeks time she will be off to camp America to work.

I know it is a worrying time for you at the moment but just try to not think too far ahead.