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Is IBD always Crohns or UC or are there other types?

(20 Posts)
moosemama Tue 09-Jan-18 13:52:26

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.

MissConductUS Tue 09-Jan-18 14:32:32

What does the report say about the appearance of the colon? What has she been prescribed so far? By the way, at age nine she should be gaining weight just by normal growth.

Sorry she's going through this. I have ulcerative colitis that just went into remission a few months ago with a new medication.

SwimmingIsMyLife Tue 09-Jan-18 14:37:19

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 flowers

Esspee Tue 09-Jan-18 14:47:45

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

moosemama Tue 09-Jan-18 15:58:50

MissConduct, the report says

Macroscopic Findings:
Upper and Lower GI tract normal
Mucosal appearances normal

Microscopic Findings:
Oesophagus, gastric body, gastric antrum and duodenum - all normal
Lower GI tract, terminal ileum normal
Colonic and rectal biopsies normal

She was also TTG negative. Which I assume means she’s not coeliac?

The only thing they found was that, despite repeated examinations by four different drs and no constipation being found, after two days of liquid diet and multiple doses of senna and picosulphate - resulting in the required clear diarrhoea for colonoscopy prep, she still had a lot of stool in her intestines. My only theory for this is that the Gastro Reg she saw in A&E put her on Mebeverine to try and control the painful cramping, which I think could possibly have slowed everything down. On examination in the A&E we were told she was just full of wind, but no constipation evident and neither of the two GPs she saw nor her Gastro picked up any constipation on examination prior to starting the mebevering. The gastro also said the stool in her intestines wasn’t constipated, which is a bit confusing.

She is now on 4 sachets of paed Movicol a day and this has reduced the pain to the point she is able to attend school, but she is still having all the other symptoms and at times her pain is still unbearable - not to mention she is completely exhausted.

Swimming thank you. It can’t be proctitis, as she has no rectal signs at all.

Esspee. Thank you, I will call and arrange a telephone appointment with the GP and also ask them if they can help expedite the follow up appointment.

No-one has advised us of how to alter her diet and I am worried about doing the wrong thing, especially as no-one seems to know what’s wrong. At the moment she is eating a normal diet, but tiny portions compared to how she used to eat and she leaves a proportion of every meal because she feels too full and it makes her feel sick.

As a family we have EDS and Hypermobility Spectrum Disorder and she is very bendy, but undiagnosed. DS2 is at the severe end of the HSD spectrum and he has always suffered with gastro problems, but more IBS than IBD in type. He also has a malrotated gut, but seeing as dd has been scoped I assume they have ruled that out for her and it is exceptionally rare for it to run in families anyway. I know there can be gut motility issues, including gastroparesis, with connective tissue disorders, but surely that wouldn’t cause the blood in her stool?

DS1 is also under the same Gastro (referred via haematology due to malabsorption issues which have lead to his blood not clotting properly). He is currently treated as Coeliac, on the advice of his old Paed and Dietician, despite negative blood tests but clear correlation via food and symptom diary 8 years ago - but this new Gastro wants him to do another gluten challenge shortly. He also has ASD and is totally freaked out at the prospect, because even a little bit of gluten causes him horrendous symptoms and pain.

CalebWomble Thu 11-Jan-18 19:14:28

That all sounds horribly worrying, so sorry your daughter is suffering through this. My dd has UC and it was very clear (to the doctors not me!) both by ultrasound and endoscopy, so you could perhaps take some reassurance from her normal results, although in many ways I think it's really worse not knowing what's going on. Dd was getting more unwell for months, but her bloods were all fine, until all of a sudden we hit crisis point and they weren't - children can compensate very well for a long time.

Oddly, her father has some malrotation of his gut, and this wasn't picked up when he had an endoscope, only when he later had a CT scan.

Just wanted to send lots of sympathy - it's awful watching your child lose weight and be so ill and for no solution to appear. I hope the consultant review comes through soon.

moosemama Sat 13-Jan-18 16:26:49

Thank you CalebWomble. I have spoken to a GP (although unfortunately not the good one) who told me to call the Gastro’s secretary, not least of all because she is due some live vaccines this week and the GP I spoke to was unable to confirm whether or not she is allowed to have them if she has an IBD, even though I thought it was only people on treatment that couldn’t. She was also concerned about the continuing weight loss.

Initially I was told there is a backlog and she has ended up on a wait-list for follow up, but then they spoke to the Gastro and called me back. She is still thinking IBD and wants to see us this week to talk through what she wants to do next. She also confirmed she can have the vaccinations.

Ds2’s malrotation was picked up during a Barium Swallow. We have seen the specialist surgeon once and they weren’t happy with the imaging, so arranged a meeting with the dr that did the BS. He’s due for endoscopy in a couple of weeks and then we are seeing them again for a final decision on whether or not they are going to surgically correct it.

Dd has had an ultrasound, so not sure if they would have found a malrotation on that if she had one. Iirc, at the appointment before the endo/colonoscopy the Gastro said if nothing was found they would do a Meckels scan next.

She was in so much pain last night that she couldn’t stand or do anything other than curl up and I couldn’t do anything to help her. She’s trying her best, attending school full-time after missing such a lot over the Autumn term, but we are no closer to finding out what’s wrong.

Still have no idea what sort of IBD the Gastro can be thinking, given all the negative results, but at least we are seeing her this week now, so hopefully they will explain and we will have a plan going forward.

I know Crohns is often considered a co-morbidity to Hypermobility Disorder and EDS, but surely that would have been picked up on her Colonoscopy and via her bloods?

Frazzledbutcalm Sat 13-Jan-18 18:45:59

This sounds quite similar to my ds. He’s now 12 ... suffered from the age of 7. Everything was ruled out but his tummy pain and toilet troubles were excruciating. He was dx with IBS, given amitriptyline for tummy pains and anxiety. He slowly got better and is now largely pain free, he no longer takes amitriptyline.

I was convinced ds had Chrons, colitis, some kind of ‘real’ problem as he was just so poorly for such a long time. I truly can’t believe it was almost all anxiety related.

Hope you get sorted with your dd.

moosemama Sat 13-Jan-18 18:55:38

Thank you Frazzledbutcalm.

I was assuming they were going to say IBS and am really confused and surprised that they are saying IBD when her test results were all clear.

She’s not an anxious child at all. Up until she caught Noro last August she was always super fit, energetic, confident and almost never ill. The only time she’s shown any anxiety was early on with this, when school were pressurising us re attendance so I had to try and send her in and she was worried how she was going to cope with both the pain and needing to be constantly on the toilet whilst at school. Both the school SENCO and one particular GP were very quick to assume it was anxiety, but quickly backtracked when we took photographic evidence of the amount of blood that was mixed in her stools.

She was the one out of my three that I never had to worry about, now I have all three with health problems and I’m at the hosptial sometimes 2-3 times a week.

Frazzledbutcalm Sun 14-Jan-18 11:14:55

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.


moosemama Mon 15-Jan-18 10:29:36

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. sad

Missingstreetlife Mon 15-Jan-18 10:35:20

Have they tested for coeliac, gluten allergy?.
There's another thread about that with lots of info

moosemama Mon 15-Jan-18 13:15:04

Yes, bloods were negative twice. I don’t think they tested via biopsy as a result of the negative bloods.

We did take her off gluten for a couple of weeks, but it didn’t make any difference at all. Obviously we would have to do it for longer to be sure, but so far there doesn’t seem to be any correlation with wheat/gluten intake and symptoms, whereas her eldest brother has a clear correlation and was taken off gluten by his paediatrician as a result, despite negative bloods.

Gastro wants him to do a gluten challenge later this year and we are still not sure, as he was so ill last time we thought he’d caught a d&v virus. He didn’t complete the challenge, having had severe diarrhoea and vomiting and not eaten gluten for 10 days prior to the blood test and of course the tests were then negative. Their reasoning is that he could potentially relax his diet if he turns out not to be coeliac, but as even a cross contamination causes him to be on the toilet in agony for hours at a time I really don’t think it’s worth putting him through it. I think they think it’s restricted diet, rather than malabsorption and want to try and get him to widen his range of foods, but he is low even in the vitamins and minerals he takes supplements for, which suggests he’s not metabolising them, rather than not getting enough.

Frazzledbutcalm Mon 15-Jan-18 14:34:26

moose ... you are literally describing our situation! It’s bizarre how alike our children are!

Ds ALWAYS used to have to go to the toilet in the middle of a meal .. every single time, home or at a restaurant! We were convinced it was a food allergy, but everything came back negative. At one point he was on an egg, gluten, wheat, fish, dairy free diet. Nightmare to follow .. made NO difference!

moosemama Mon 15-Jan-18 16:05:57

He doesn’t have any connective tissue disorder like JHS/HSD or EDS does he? I know problems like this are pretty common in that group and are starting to be attributed to Mast Cell Issues more and more. Dd gets a red patchy facial and chest rash every time she flares and apparently that can be a sign. So far the gastro has just dismissed that as stress from the pain, but it’s quite distinctive, so if we don’t get any answers soon I will raise it as a possibility again.

Frazzledbutcalm Mon 15-Jan-18 16:33:25

moose .... he does have hypermobility ....
His tummy pain was constant, but his flare ups were horrendous! He used to go deathly pale, feel sick, doubled over in pain, sore eyes, lethargic/couldn’t move ... just awful.

moosemama Mon 15-Jan-18 20:26:41

That’s interesting. Often gastro issues in people with HSD or EDS are never solved. Many of them get labelled FGID (Functional) but some are down to gut motility issues - either too slow, stopped completely or too fast. Some end up with Gastroparesis, where their digestion effectively just stops and all those issues are related to a malfunctioning Autonomic Nervous System, which ds2 and I both already have. It would make sense I suppose, if dd’s issues are Autonomic as well, but I really hope they’re not, as there isn’t really much that can be done if they are.

Aren’t sore eyes a red flag for Crohn's? Dd has had red-ish sore eyes on and off over the last couple of weeks, but not bad enough for a GP visit. She told me last night that when she sees bright light she gets double vision. She will be with me when I take ds2 to the GP about his eyes tomorrow, so I think I will mention it, but I am about to book her a routine eye test anyway, so hopefully they would pick up anything untoward if there is something.

moosemama Fri 19-Jan-18 20:42:51

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. sad

Frazzledbutcalm Sun 21-Jan-18 09:06:06

I’m sorry you’re not getting answers moose
It seems sometimes there are no answers, but surely there should be?!

We didn’t really get answers .... just dx of IBS. It took 5 years for ds pains and flare ups to settle down .... but those 5 years were just awful, horrendous at times. We literally drove ourselves mad trying to keep diaries, google, investigate and work things out for ourselves. But we found no pattern at all to his flare ups, so couldn’t do anything constructive about his problem.

moosemama Sun 21-Jan-18 14:08:50

I don’t think that’s the case though. I think it’s more that local drs don’t have the resources to think outside the box and consider less obvious options. Unfortunately one of the best Paed Gastros in the UK has just retired and been replaced with a lower grade General Paed, who is busy removing diagnoses as he doesn’t ‘believe’ in them, despite being nowhere near specialist enough to understand them. Those children have been taken off their meds and become really ill as a result.

There are other possibilities such as dysmotility, autonomic issues, mast cell and more. Unfortunately there aren’t the drs or the resources within the vast majority of NHS hospitals to consider and/or investigate them.

I am pretty sure, if we could get her to the right dr, they would know where to look and what to do, but very often you only happen across those drs by chance, I know I did when it came to finding an Electrophysiologist to manage my POTS. It just happened that the local Cardiologist I was sent to for another issue had a special interest in POTS that we didn’t know about prior to the referral.

I’m not giving up yet. I am exhausted from fighting for all three dcs to be have their issues properly investigated, diagnosed and treated/supported, but I can’t leace her in this state, she is literally a shadow of her former self and in constant pain.

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