Can i have an urgent opinion please?? **Trigger Warning - Graphic Images**

[Ouchmyheadhurts]

My dc is under paed care (I have another thread about auto immune) basically he’s had explosive diarrhoea, mucousy stools and stomach ache since January. He’s had two lot of stool samples and all fine? Had bloods and all ok apart from Ana abnormal and low ferritin. He had those bloods re done last week to check. Paed said primal food intolerance, said 4 weeks dairy free, 4 weeks wheat free (currently half way through) and 4 weeks low fructose and ‘see you in a year’

Anyway about 2 weeks ago he starts having blood in his poo/the water. GP not concerned and said probably piles. Today he’s told me he’s being feeling something ‘there’ in his backside, been feeling it a while, didn’t want me to look so I said probably piles don’t worry and if he would feel happy me checking then to let me know. He’s just called me and said it’s happening and let me look. It doesn’t look like piles, I’m petrified it’s some sort of prolapse? He said it happens when he wees, poos and sometimes randomly. I could see whatever it is sort of come out his back side as he was on all fours...... he said when it happened is when the mucous comes out. This is all new to me and I’m really worried. Do I need to take him to gp tonight?? What does a prolapse look like? Could it really be just piles? He isn’t itchy ...

Yes he gets stomach ache, he doesn’t really have an urgency as such but I think he’s struggling to know sometimes if he needs a poo or if it’s the prolapse? He has a lot of mucous. Stools have always been mucousy and sometimes when he goes, he’ll pass wind and just aload of mucous will come out. He’s had the bleeding too but not all the time.

His belly looks very distended but no one is concerned about it. He’s top end of weight for his height so I don’t know if it’s that but his belly looks or of proportion.

I think it’s probably some kind of IBD as he’s not got any other symptoms of an autoimmune condition, so I’d push for a colonoscopy as the prolapse also needs looking at.

If the blood test comes back positive, I’d ask them to do some further investigations just to rule out an autoimmune condition.

Re anxiety and IBS it’s not just people with autism that suffer with anxiety that can subsequently trigger IBS, I have IBS and anxiety and certain foods trigger it in me (anxiety is my main trigger). I know you’ve done the food diary and cut out certain foods, but I’d also look at foods that can trigger IBS.

I’m not sure what his diet is like but it’s thongs like:
cut down on rich or fatty foods including chips, fast foods, pies, batter, cheese, pizza, creamy sauces, snacks such as crisps, chocolate, cake and biscuits, spreads and cooking oils, and fatty meats such as burgers and sausages
reduce your intake of manufactured foods and cook from fresh ingredients where possible
limit fresh fruit to three portions per day (one portion is 80g).

If symptoms include bloating and wind:
• Limit intake of gas producing foods e.g. beans and pulses, Brussels sprouts, cauliflower, and also sugar-free mints/chewing gum.
• You may find it helpful to eat oats (such as oat-based breakfast cereal or porridge) and linseeds (up to one tablespoon per day).

If symptoms include diarrhoea:
• Replace lost fluids by drinking plenty.
• Limit caffeine intake from tea, coffee and soft drinks to three drinks per day.
• Try reducing intake of high-fibre food (such as whole-wheat breakfast cereals and breads).
• Avoid sugar-free sweets, mints, gum and drinks containing sorbitol, mannitol and xylitol.

So things like sugar free cordial can be triggers, I know if I have sugar free sweets that sets me off! 😂

www.bda.uk.com/foodfacts/IBSfoodfacts.pdf

The GP said that coeliacs can’t be ruled out despite the negative blood test for it as you can get false negatives. The coeliacs society have said the same thing to me?

Chron’s and celiac disease have similar symptoms:

Overlapping symptoms between Crohn’s disease and celiac disease include abdominal pain, diarrhea, anemia, and short stature. Other symptoms include rectal bleeding

celiac.org/about-celiac-disease/related-conditions/crohns-disease/

Yes the coeliac test can be negative so a endoscopy would be needed to rule it out, but as he’s got a prolapse I think they’d probably do the colonoscopy in the first instance.

www.coeliac.org.uk/information-and-support/coeliac-disease/getting-diagnosed/blood-tests-and-biospy/

He’s currently wheat free (as per paed instruction 3 weeks in) he seems to have less pain but same issues. He’s still having oats, barley, rye etc as that is what’s on the diet sheet..... if he has biopsies for coeliacs, he needs to have wheat in at least 2 of his meals a day for 6 weeks so I’m a bit concerned, that is in back of my mind but guess I’ll cross that bridge if/when I get to it!

Unlike Crohn’s disease, celiac disease symptoms usually disappear when patients adhere to a gluten-free diet.

I think one of the problems you have it can take months for any changes in diet to take effect.

According to coeliac UK, It can take between six months and up to five years (in some cases longer) for the gut damage caused by eating gluten to fully heal. They also talk about being oats ect free. www.coeliac.org.uk/information-and-support/living-gluten-free/the-gluten-free-diet/

I guess as it takes time the first things to do are:

• Wait for the blood test results - and have other tests of positive.
• Go gluten free & look at the IBS diet
• Ask for the colonoscopy as this will look at his rectum and rule out other IBDs (colitis/chron’s)

He’s still eating oats, (so gluten) rye and barley, all things you don’t eat if you have coeliacs. As per paed instruction. At the end of the 4 weeks I then have to go low fructose..... and then go and see the paed in July 2020!

And I’d also write down any questions that you have when you get the results of the blood test, and ask them what to fully explain what the results mean. As it’s ok saying it’s abnormal ect, but exactly what does that mean? So for the FBC they found the red blood cells were small, they could have explained that’s probably due to rhow folate and as a result he now has iron deficiency which is probably attributed to him having diarrhoea and not absorbing iron properly

With regards to the results, gp didn’t know about the Ana, she said it should be either negative or positive. With regards to ferritin she said he isn’t clinically anaemic and that she could prescribe iron but it would probably clog him up which isn’t a good idea when we don’t know what’s wrong. I agreed with her. He has a healthy diet also I agreed to see how he went so will see what happens. I have a phone call booked with same GP Wednesday.

So they’re saying a 12 month follow up?! Sod that! He’s already showing signs of iron deficiency anemia, and either needs iron tablets or his diet looking at, plus the prolapse!

He certainly needs the prolapse looking at, and a referral to a dietitian so he’s diet is properly looked at.

Please please go to PALS once you’ve got the blood test.

The GP sent the bloods straIght to the paed. A completely different paed rang me the next day t say there isn’t anything to worry about, when I argued with him that of course I was worried he then said ‘repeat the bloods in 2 weeks’

He’s had the bloods. The results that were in were fine. They haven’t had the Ana result yet. That’s what I’m waiting for. I will be calling hospital Monday.

Yes the paed barely looked up and said here’s some diet sheets (aimed at weaning babies) said dairy free 4 weeks, wheat free 4 weeks then low fructose 4 weeks, come back in a year. Hence why I’m pissed off!

Yes the iron tablets can cause constipation, so I’d look at iron rich foods which can be tolerated in people with coeliac disease/IBS, or I’d also ask your GP if the iron supplement Spatone may be a better alternative.

Ok so they’re probably not concerned about the ANA result as he’s not showing any other signs of an autoimmune condition, and they might have been borderline, plus a positive test isn’t conclusive of an autoimmune condition. They should have explained this more clearly.

The low ferritin and small red blood cells show signs that he’s becoming iron deficient, so I’d get them to repeat an FBC in a few weeks time and try and get him to eat foods reach in iron.

He’s always covered in bruises he doesn’t know how he got but I put that down to his hypermobility..

He was just crying in the shower as it had come out and he’s scared about it being like it forever

Wtf have they not done a colonoscopy yet? I would be pushing hard for this if I were you. They can take a biopsy t test for coeliac and look for other conditions. It's appalling he's just being left.

Rectal prolapse

This is when the inner lining of the rectum can be seen hanging out of the anus. It is dark red, slimy and may bleed.

Most parents are terrified when they see this for the first time. Their child is crying and has usually been straining to pass hard faeces.

The child may feel that there are more faeces to pass, and keep straining, but the feeling is caused by the prolapse itself.

The child should be laid down on their front, and often the prolapse will go back by itself within a few minutes. If necessary, push it back with a wet wipe rather than tissues

Encouraging your child to pant during defaecation may help.

Sometimes the prolapse can be persistent and need injection treatment, as is done in adults for piles. Your child will need to come in to hospital for the day and will need a general anaesthetic (medicine given to make you go to sleep) for this procedure.

www.uhs.nhs.uk/Media/Controlleddocuments/Patientinformation/Childhealth/Analfissurerectalprolapse-Patientinformation.pdf

It’s the diarrhoea that must have caused it as he hasn’t been straining. It’s so unfair, feel so sorry for him. Iv promised him tonight I will sort this, using my credit card to go private if necessary. Not that I should have to. I shall be kicking off on Monday.

Re the bruising his FBC doesn’t suggest it’s anything to worry about.

Yes it’s probably the diarrhoea that’s caused the prolapse. Please contact PALS at your hospital, you can probably do this over the phone or via email the details will be on your hospitals website

Nope, no ones mentioned nothing at all from the bloods apart from the Ana and ferritin/red blood cells.