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Uk Consultant won't diagnose Crohn's...

M

Mumoftwouk

Hello everyone. I'm new to this and have seen such support you all provide.

My youngest daughter is just four years old and has had symptoms for just over two years. She has had a barrage of tests and her symptoms are as follows...

Tummy pain (most days and sometimes enough so she lays curled up wherever she is)
Joint pain (hips, knees, back)
Bloated tummy
Rectal bleeding (only started recently, but occurred three times in a week)
Slow weight gain (dropped two centiles)

The consultant says she has raised inflammatory and white cells and her last colonoscopy showed ulcers.

He started her on antibiotics and steroids, then at review two weeks later he said he is still unsure of the diagnosis!?!?
Any Advice greatly appreciated x
 
S

sparkyh

Hello

Sorry for everything your daughter is going through.

I'm not a doctor but the symptoms you have described certainly sounds like it could be Ibd. There are two main types of Ibd - crohns & ulcerative colitis. Could it be the doctor can't, at the moment differentiate between the two? The two can appear to be similar at times. Have they said anything like this? They could just be being really careful and exploring all possibilities at this stage, especially because she is so young.

If your not happy though, you could try another consultant for a 2nd opinion. Whereabouts in the UK are you? Google the best Gastro doctors in your area. If you are in the north I would recommend Salford Royal.
 
M

Mumoftwouk

Hi Sparkyh,

We have been seeing a private doctor in sheffield, through my husbands private healthcare through work.

When my daughter had the colonoscopy, he said "Almost certainly, without a shadow of a doubt, it's crohns". Then for two weeks later to say he was still unsure.

She had a capsule endoscopy at the same time, which was ok, but doctor said she could have microscopic crohns there also.

I think a second opinion would be useful, as our doc see,s unable to link the dots and settle on a diagnosis. He has said he has never seen it so young before.

My daughter also has iga deficiency and gets so tired, she still relies on a pram when we are out.

It's so very frustrating :(
 
Maya142

Maya142

Moderator
Staff member
Hi and welcome! Your poor little girl :(!

Sometimes doctors get hung up on the biopsies. They want to see granulomas on the biopsy to diagnose with Crohn's. However, many patients with Crohn's do not have granulomas, so it's a bit silly.

He also may be unsure about whether it is Crohn's or Ulcerative Colitis? It certainly sounds like it's some kind of IBD. Ulcerative Colitis affects just the colon. Crohn's can affect just the colon, but can also be anywhere in the GI tract, from top to bottom. Depending on where the ulcers and inflammation where found, he may not be able to differentiate just yet.

It does sounds like he is treating her for IBD -- steroids are often used as a first line treatment.

A second opinion might give you some more clarity.

I'll tag some more parents who may have other ideas:
DustyKat
my little penguin
Clash
crohnsinct
Farmwife
Sascot
 
M

Mumoftwouk

Thanks Maya142.

The biopsies he took from the colonoscopy showed abnormalities and the pictures he showed us were awful ulcers.

Obviously when he initially told us it was crohns, I started doing my research and found this form so very helpful and supportive. It all made sense, with her symptoms and we thought finally we could get her some help. Then to be left frustrated at the last appointment was upsetting. She starts school in three weeks and she is at the worst I have ever seen her at the moment.

I'm going to ask our gp for a referral for a second opinion, thanks
 
Maya142

Maya142

Moderator
Staff member
It's strange that he thought it was Crohn's and then changed his mind. It definitely does sound very much like Crohn's Did he say why he changed his mind?

Both steroids and antibiotics (usually Cipro or Flagyl) are used to treat IBD. Has she improved at all on them?
 
M

Mumoftwouk

He was expecting to see more issues in the small blwel from the capsule, so it made him re-evaluate.

She hasn't improved any unfortunately, only suffered more from the side effects of the meds x
 
my little penguin

my little penguin

Moderator
Staff member
CarolinAlaska

CarolinAlaska

Holding It Together
I think it is good if he is being thorough and wanting to get it right early on. Did he say what he wanted to do next to sort it out?
 
M

Mumoftwouk

His latest letter to gp says she has sigmoproctitis, blistering large bowel disease and chronic neutrophilic inflammation, with undetectable IGA. All of which is possibly due to ibd of some sort, most likely Crohns. He says probably do another Mri enteroclysis and small bowel ultrasound to check for thickening in right iliac fossa.

She is still continuing with the prednisolone and we are reviewing with gp next week.

Her symptoms are bad at the moment, with the worst abdominal distension she's ever had 😔
 
kimmidwife

kimmidwife

I am so sorry to hear. If she is getting worse maybe you need to call or take her in to be evaluated?
I hope you get things figured out and quickly.
 
DustyKat

DustyKat

Super Moderator
:ghug: So sorry to hear that things haven’t improved. :(

If the GI is suggesting further imaging then I hope it can be arranged in the very near future. My concern with holding off too long is that whilst there may not be obvious improvement at this point the Pred may be stabilising what is causing the symptoms. Of course that is a good thing but not when you are trying to diagnose as it removes the physical signs you are looking for.

The MRE will likely be more difficult to organise at short notice so when you see the GP I would get the ball rolling on organising it and in the meantime get the ultrasound done ASAP.
 
P

positivemum

My sympathies are with you. we are in the UK too and our son was diagnosed at 12 after bleeding and mouth ulcers. The colonoscopy showed awful ulceration and was confirmed from biopsies.

We have been lucky in that his diagnosis was confirmed but I have learnt that you need to become educated in the condition and fight for waht you know your little one needs. Even the IBD nurses said we would become better experts in his condition after time and that is true. If you're not happy keep asking questions keep going back. the quicker the right treatment starts the better.

Good luck and feel free to contact me
 
M

Mumoftwouk

Hi Positivemum,

Where in the uk are you? I'm interested in a second opinion, so any suggestions would be appreciated.

We are off to see an immunologist on Tuesday, so I'll be asking about immunodeficiency and genetic testing. Meeting with gp too next week to discuss her issues. She had more bleeding on Tuesday and only 2 weeks of pred left so not sure if it's going to have done anything. Her tummy pain is still as bad unfortunately.
 
P

positivemum

Hi
We are in south manchester and attend Manchester's Children's Hospital. It's good you are seeing an immunologist as they may shed some light on things. Keep asking questions and researching yourself. I know Dr Google can be dangerous (!) but I have found loads out on the net about the condition. Keep in touch
 
M

Mumoftwouk

Hi again. Consultant says the prednisolone isn't working so we are awaiting to hear from him with the next steps.

My daughter is really struggling, her aches and pains are bad, today she has had a fever and I don't know at what point I should be worrying.........
 
P

positivemum

Hi

Hope your daughter is feeling a bit better today. If she has a temperature maybe she has a virus - I know crohns symptoms mask lots of 'normal' illness. Go to the GP if you're worried. Do you have any other experts eg. IBD nurses to call? Maybe not if you are still awaiting a diagnosis.

thinking of you
 
M

Mumoftwouk

Being admitted to Sheffield on Wednesday to start liquid nutrician and immunosuppressants. Feeling very apprehensive but hopeful that this will eventually help her. She was due to start school on Thursday too :(
 
Maya142

Maya142

Moderator
Staff member
Poor kiddo. Good luck! Will she be using an NG tube or drinking the formula? We have some NG tube tip if she has to use one.
 
Jomar_uk

Jomar_uk

Mumoftwouk said:
Being admitted to Sheffield on Wednesday to start liquid nutrician and immunosuppressants. Feeling very apprehensive but hopeful that this will eventually help her. She was due to start school on Thursday too :(
Click to expand...
Hi

Keeping you & your daughter in my prayers.

A very good book that helped me is by a Professor John Hunter
"The essential guide to controlling crohns disease, colitis & other ibds".
ISBN 978-0-09-193508-5
Publusher: Vermilion

I actually also discovered vsl+ reading it (a pharmaceutical probiotic) & got my gp to prescribe (it helps increase the good flora in the bowel) on top of explaining all the options for treatment & how certain drugs work that are prescribed. I found it comparatively easy to understand & also understand my disease (CD) a little better.

These forums are excellent for support & understanding but I personally prefer books for myself :)

Professor John hunter of addenbrooks is one of the world's leading "experts" on IBD. I really would encourage any IBD sufferer to read it. It is not just great information but factual with compassion I found.

Shalom & best wishes, john
 
Last edited:
M

Mumoftwouk

Hi everyone...

So we spent two days in Sheffield children's hospital, saw another gastro consultant, dietician and immunologist.

General consensus is that it isn't crohns, but possibly a gut allergy or herschprungs disease. However it appears that the treatment would be the same at the moment anyway. She has today started the liquid nutrition, with a few foods (6) diet, with movicol daily and daily probiotic. They say we should see some improvement in a few days, but she will be on this diet for 3-4 weeks. If it helps then slowly reintroduce foods one at a time.

As she hasn't had any rectal bleeding for two weeks, they say she doesn't need any more antibiotics.

Our GP isn't happy with the consultant saying its crohns, changing his mind no being so very "fluffy" (his words). Consultant even said that although her bloods have been showing issues, they could be due to infection and that certain parameters may not suit our daughter!

In the meantime, we have sourced a gastro consultant in London who we are going to approach about a second opinion.
 
M

Mumoftwouk

Quick update... My amazing daughter has managed to take the liquid nutrician orally. However her symptoms haven't changed and she has had bleeding again for the last two days.

We are back to Sheffield on Saturday for review, still with no clear diagnosis.

A second opinion is being lined up in London, just waiting for nhs notes to come through!

Little one has started school now too and teachers say she is frequently complaining of pain, circling up in a ball and she's exhausted, feel so useless that I can't help her :(
 
polly13

polly13

Location
Tipperary, Ireland
So sorry your daughter is stuggling with her symptoms in school. Hope fully your second opinion will give you more answers. When Lucy started school, we started with 2.5 hours initially and gradually built up to full days over a couple of months, I think this really helped her, she also had a Special Needs Assistant assigned to her to help her in the bathroom but also to provide a little comfort when she was distressed and in pain - is that something you can look into (or maybe its in place already). I understand where you are coming from I found that first 6 months of school so stressfull and I was on high alert all the time. Hope it all works out for you and for her.
 
M

Mumoftwouk

So,lots has happened in the last three months. We have been to see a doctor at Great Ormond Street and they have started genetic testing and immunology tests. In the meantime they have put her on sulphasalazine as she is now stable after pentasa sorted her symptoms. She is on a few foods diet with new food being intoduced a stage at a time. Just checking the sulphasalazine side effects as she has struggled the last six weeks. She has had three infections, waking in the night upset and really angry. Has anyone experienced any side effects on sulphasalazine?
 
my little penguin

my little penguin

Moderator
Staff member
Sulphanazine is just an older version of 5-AsA(pentasa )
So same class of drugs
Extremely mild
Does not make you more susceptible to infection
It also is not an approved monotherapy for Crohns
Crohns affects all layers of the intestine through the thickness
5-asa and sulphanizine act as a cream and only affect the top most layer leaving inflammation underneath to simmer
Formula only can act as the same as steroids and heal things

Good luck
 
M

Mumoftwouk

The drug information sheet says...
This medicine may increase your risk of developing infections. Avoid being near people who are sick or have infections while you are using this medicine. Wash your hands often. Tell your doctor if you have any kind of infection before you start using this medicine. Also tell your doctor if you have ever had an infection that would not go away or an infection that kept coming back.
 
my little penguin

my little penguin

Moderator
Staff member
Drug risk for infections are tiered
5-asa are the lowest
Immunosuppressant next level
And biologics up from there
Combo of biologic plus immunosuppressant the highest level of suppression

They make it more likely to have opportunistic infections
Not regular infections
Meaning if you get the flu your more likely to have complications such as pneumonia

But they do not make it more likely for you to get the common cold

Veo ibd sometimes is actually mongenic diseases with immunodeficiency which would explain the extra infections more

Ds has been on very high level immunosuppressant/biologics for 6 years and not had any real issues
Gets sick less often than his siblings


Tagging dancemom
Her dd has immunodeficiency and does get more infections than the average kid because of it
 
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