My 9 year old dd has been really poorly for months now and had an Endoscopy and Colonoscopy in November, for which I have just received the report this morning.
Her blood results have mostly been normal, except for some anaemia, which I’ll admit I am a little confused about, as there is no unit listed against the figures on the report and a quick Google throws up different reference ranges on different sites (Hb 102 normochromic/normocytic with a test a couple of weeks later showing Hb 112 and Ferritin 46.)
The report states that her consultant suspects ‘one of the disease spectra of IBD’ and that we are to keep her colon as empty as possible (for which she has prescribed Movicol). Apparently she will discuss this further at her review in clinic - for which we have now been waiting two months and still don’t have a date.
Does this mean that the consultant still suspects Crohns or UC, despite normal biopsies and no inflammatory markers (CRP and ESR were normal) or could it mean she has some other form of IBD of which I am not aware?
When she was seen by the Gastro Reg in A&E a few months back (after calling her Gastro’s secretary and being told to meet them there, when she had been screaming in pain for four hours straight) she was insistent it was IBS and the pain was being caused by wind!
Symptoms are exhaustion, dizziness with occasional fainting, pallor with big black rings under her eyes, grey stools which sometimes have blood mixed in (including one particularly scary looking one which contained a large amount of dark red blood, which we photographed and was one of the reasons the Gastro decided to do the Endoscopy and Colonoscopy). She has pretty much constant abdominal pain and sometimes it’s so bad she is screaming in pain. She used to be super fit and always healthy and has gone from that to a shadow of her former self since last August. She is slowly, but steadily losing weight - not a massive amount (just over 2lbs since November) but still losing and she looks really gaunt and obviously poorly.
It all started with a Noro-type infection early August last year and then another, less severe stomach bug at the start of November, but stool samples have been negative for pathogens.
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Children's health
Is IBD always Crohns or UC or are there other types?
moosemama · 09/01/2018 13:52
As far as I know, the other IBD is proctitis or ulcerative proctitis which is essentially UC but limited to the rectum. It certainly wouldn’t be causing all the awful symptoms your daughter has and would have been spotted on the colonoscopy anyway.
I have nothing else useful to add but hope you get something sorted for her soon 
Your GP should be able to answer your questions about the report. In your place I would be on the phone regarding the clinic appointment, even going to the hospital in person. Your GP might be able to secure an earlier appointment so do ask for help.
In the meantime I suggest you treat your daughter as though she has a definite diagnosis and alter her diet to suit.
Poor girl, and you must be so worried.
Hope you get some answers moose ... I’d be confused if they’re saying IBD, yet all tests are clear.
Could it be as ‘simple’ as the virus she had has simply not left her system? I’m under the impression they can last for years? Funnily enough, my ds’s starts after a very bad virus also .... never connected that after all the years of suffering! In the end his was put down to anxiety, but I definitely think it started from his virus initially. They also thought appendicitis initially ... I knew it wasn’t as we almost lost dd to appendicitis a couple of years previous. His was nothing like hers.
Sometimes I think they just don’t know ... and that’s the most frustrating thing, for both families and hospitals alike. We literally drove ourselves mad trying to ‘diagnose’ ds at the time.
I too have 4 of us with health problems, I seem to be constantly at the doctors, hospital or school! It’s never ending ... and extremely tiring.
She has had a couple of stool tests that came back negative for pathogens, but I think that’s bacterial. I did ask if it could be a virus that’s not left her system, but again, she isn’t showing signs of fighting anything in her white cell and inflammation levels.
I wouldn’t be as worried about it if it wasn’t for the blood and grey stools and her being so drained. She is so ridiculously skinny now, with sunken cheeks and big dark rings under her eyes. Looking back at the photos of her on holiday last summer, the week before the Noro-type virus, she looks like a completely different child.
I get the impression from the message her secretary gave me that the Gastro has some reason for believing it’s still an IBD, despite the negative test results. I suppose we’ll find out on Friday.
The only sign something is up, other than the blood and grey stools, is the anaemia. She has daily spatone in a cup of orange juice and a good quality multivitamin, plus vit d daily and a sublingual b12 once a week and the anaemia was a little better at her last test, but still only on the cut-off for being anaemic.
High fat food seems to be a major trigger, as does fibre and the reaction is really fast, she became really ill half-way through her Christmas meal and last week was given a mini Mars bar by a friend, which she ate and was in absolute agony for within the hour and for the rest of the night. She always has to leave to go to the bathroom in the middle of a meal too. It’s her birthday today and we know the birthday cake is going to set her off, but she doesn’t want to miss out of having one. 
So, quick update.
Saw the Gastro today. Contrary to the letter, they are now saying she thinks all three of my dcs have IBS, secondary to hypermobility and not IBD. (Two of them aren’t diagnosed with hypermobility syndrome and one definitely wouldn’t meet the criteria as he’s super bendy, but has no pain at all.).
They have ordered a fecal calprotectin and are sending dd for an MRE (small intestine) as they weren’t able to check that, but said they think, given the lack of inflammatory markers in her bloods and clear biopsies, they will also come back clear and at that point they have nowhere else to go with her, so it will be an IBS diagnosis.
She has been given senna to take along with the movicol, but as dd is pooing 7-8 times a day (no diarrhoea just pale bulky stool that’s very often grey or yellow) it’s not like she isn’t passing anything. She has also been given peppermint oil (colpermin) as mebeverine and buscopan did absolutely nothing.
The nurse that checked her weight and height was concerned from the moment she saw dd. As it happened dd was having a bad flare while we were there. She was deathly white, in a lot of pain with a distinct red rash on a patch of one side of her face and really pronounced dark circles under her eyes. The Nurse was concerned enough to knock on the Gastro’s door to tell them and check on dd in the waiting room twice.
On examination all the pain was central, as usual, which does suggest small intestine, but I can’t help thinking she is going to end up being discharged and left on laxatives indefinitely, when prior to the noro she never had a day’s gastro problems in her life and she was the picture of health. Gastro mentioned the rash and I asked about possible Mast Cell, as that is comorbid to hypermobility sydrome but they just said ‘it’s a possibility’ and left it at that. I do know that most Gastros know very little about it though.
So, dd is to be reviewed in three months, after the MRI. Given this has been going on since last August and she is still suffering so badly on a daily basis I am at a complete loss. They have been proactive in running all the tests, but it has got us absolutely nowhere - except to end up with dd having a needle phobia.
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