SCOPES

Hi Cath,

As you know we haven't been through it yet (we are due in spring) so i can't talk from experience but the friend I have whose son has had it done every year has been very reassuring and has made me feel a lot better about the whole thing.  

When I had it done myself, I was awake, and it was really very quick and straight forward and I felt reassured by that.

The only bit that wasn't great was the bowel prep but as long as you are prepared to hang out near a loo it will be ok. When its our 5 year olds turn, I intend to make a little camp in the loo and read lots of books, play games etc. A supply of nappies and nappy rash cream might be in order!

I hope someone replies who can reassure you and give us more info on their experience (or lie!!)

Kx

Hi Cath and Kitty and any other scope virgins

Glad you have a date booked.  We are having them in half term so will have a 5th experience to add!

I'm not going to lie - but because I don't need to do so.  As I said this will be our 5th time between the two children.  Do you know if you are going in the day before for the bowel prep or are you doing it at home?  We have done the last two as day cases and certainly our preference to have them in their own environment for the bowel prep but they sometimes like the smaller ones in the day before.

I look at it as a 72 hour event.  The day of bowel prep, the day of the scopes and the day after getting back to whatever normal is.  It isn't much fun but I remind myself of all the hours of pain and screaming and distress they have gone through and it sadly totals a lot more than 72 hours.  But afterwards you MAY have answers and a way forward to help your child more.

The bowel prep isn't nice but it is such a necessary part of it.  You will get clear instructions on what amounts to give and when.  It is also really important to try and keep their fluid levels up before you get to the nil by mouth bit to help the bowel prep work.  If you look at the bristol stool chart - fun bedtime reading then you really need the poo to be at the last stage - ie watery.  Not rocket science but the better the bowel prep the better the view and the better biopsies they can get.

I don't know where you live but if you are outside the M25 you can request to be at the patient hotel the night before so you are on hand for scope day if not on the ward.  Or if you want to avoid public transport you can get a permit to park from the front desk if having a day procedure.  We drive in on the day as Ben hates staying in hospital and not good on trains.

Once the bowel prep is done you then have the situation of them potentially wanting to eat/drink when they can't.  This is where all your powers of distraction and bribery are tested to the limits.  Very hard but again keep telling yourself it isn't long in the grander scheme of this.

The doctor will go through the medical history and ask you to sign the consent form having told you all manner of things that could go wrong! I nearly said no first time.  But that is the legal requirement and I remind myself of all the possible side effects listed to the simplest of drugs.  Covering themselves and making sure you are giving informed consent.

Getting them in the gown is hard as the reality that something is going to happen hits them even more.  Lots of cuddles and any familiar things like Tedddies or books can help.  You then have potentially the worst bit when they put them under and you have to leave.  Can't lie, it is awful!  But you are handing them over to experts who do these procedures day in day out, week in week out and they know what they are doing.

Sitting in the waiting room is horrible but at that point there is no more you can do.  You are sat there hoping that they find something that explains what is wrong with your child but not wanting them to find something either.  With our first one - in the days you could stay I felt so pleased when we were immediately told there was a problem then guilty for feeling pleased.  

They will come and get you once they are in recovery and you may well have a very grumpy sleepy child.  That is completely normal.  With the choice of drug they use they do come round fairly quickly.  Depending on the child once they have drunk/eaten/done a wee and come round ok you can go.

You may/may not see the doctor afterwards.  Depends on how busy they are and what else they are doing.  Sometimes things can look fine visually and the biopsies show problems or not look that great but biopsies come back ok.  I look on it as great if they find something and if they don't it doesn't suddenly mean my child is ok it just means they have got a harder job trying to work it out.

A positive to the bowel prep is they are starting again with an empty bowel.  Rare for some of these kids.  There can be a bit of tummy ache afterwards but in general they should get back to "normal" quite quickly.

I hope that helps and do ask if you have any questions

Helen

Hiya

thank you so much Helen! That really helps and answers most of my questions! Do you remember if they have to starve from when they start the bowel prep (i did) and if not then is it true they are allowed jellies or lollies or something like that? Also, is the bowel prep drink flavoured nicely as my son is very fussy and won't eat/drink things out of his normal range?  

Thanks for taking the time to write about your experiences! Really appreciate it! Good luck for the scope in half term. Sorry you are on your 5th time. you must both be fed up with it by now. I hope it helps the decide a path for moving forward. 

big hugs,

Kx

Hi Helen

Thanks so much for your input - really helpful. May I ask if your guys have had to stop their meds, and if so how long for?

Cheers

Cath

Cath - little one born 2009 has inflamatory bowel and colitis...

Hi Kitty and Cath

In response to your questions

Meds - we give Ben's morning meds the day of bowel prep then he goes without them until after the scopes but discuss this at your pre-admissions as this can vary.

Not sure on the flavour of the bowel prep.  Something to discuss with them.  They use senna which is rank and either picolax or cirafleet that are a powder mixed with water.  I expect it either comes or can be flavoured. If it comes to it they can be given via an ng tube but a lot more traumatic for everyone to have to go through that.

Fasting - just had the details through today.  Obviously doesn't count for us as Ben nil by mouth but they will give you a list of what you can/can't have.  Essentially no solid food or milk from 10am the day of bowel prep so give a good breakfast!.  They can have water, orange/lemon squash, jelly, marmite drink, apple juice, slush puppies, ice lollies, clear boiled sweets and chewing gum.  There is also a list of what they can't have.  Nothing red or purple.  Obviously this is just what we have been given and you will get your own list but I expect it will be the same. Really important to keep them drinking fluids to avoid dehydration from the bowel prep. They like them to have a glass of allowed drink an hour if possible when awake.  Won't be possible for us but with nothing in the gut the bowel prep doesn't have as much to do for Ben.

Then you get given two times, depending if you are on the morning or afternoon list.  So for example we are on the afternoon list so no foods such as jelly (can't anyway) from 7am or water from 9.30am.

This is very much just the instructions we have been given so don't quote me but I would expect you to get the same or similar.

Hope that helps.

Helen

Hi Helen, That helps lots! Thank you for answering my questions. I feel more relaxed now I have an idea of what will happen.

Thanks and I hope your 2 are okay this week,

Kx

Hi Helen

Thanks for that. The food stuff is what we have in our pack, but it's good to know what you do for meds. I'll obviously ask Dr Shah on the 28th exactly what he wants us to do. Also I did not know about the availability of the parking permit. V useful as we'd already decided to drive and perhaps have one of us drop the other and Rube off. Much nicer not to have to be separated.

I am already working on the old distraction strategy - so far popup version of one of Ruby's favourite stories is hidden under our bed and some very snazzy disney stickers. Mickey Mouse Clubhouse on the iPad is also part of the plan...

xx

Cath

Cath - little one born 2009 has inflamatory bowel and colitis...

Hi Helen

I forgot to ask, what exactly is the channel for the parking permit? We go to the Octav Botnar wing at the moment for Ruby's appts. Can I ask the reception there, or do I need to go somewhere else to inquire or phone - what did you do basically?

Sorry to pester with questions, hope you don't mind...

x

Cath

Cath - little one born 2009 has inflamatory bowel and colitis...

 Hi Cath

If you go to goshs website and put parking in the search box the first response directions, maps and parking will explain about coming by car. Do you see Dr S at the Harris centre? Not sure if parking the same for private patients but I expect so. 

If reception at octav botnar can't do it then If you take your admission letter to the front desk in the main reception area of the hospital they can give you a yellow permit for parking in Guildford street. You can't use them for several days admissions. They can be used on the day of admission and day of discharge or if a day case procedure.

If you are under the Harris centre then some things may be different. I think they use Bumblebee ward.

The other thing we do for out patients if we can't find a disabled bay is park in the imperial hotel car park. Bout £8 depending on how long we are there but cheaper than a lot of places.

Any other questions just ask.

Helen x 

Hi Kitty, Cath and Helen

I am not going to post about my experience of having a recent endoscope and sigmoidoscopy, because firstly, I was not that impressed when I was told they could not get that far , as the enema did not work. I thought they should have done a complete colonoscopy, but that is another story. Secondly, Daniel has been to hospital and drs with breathing problems so let us just say that he does not like hospitals and he makes his feelings v clear!!

What i will say is that it was not nice, but short-lived. More importantly, we got answers! Immediately after, I was told Daniel scopes were fine, so was totally prepared to hear that they had found nothing and for everyone to carry on thinking I am totally neurotic. BUT they did not. He does have reflux and oesophagitis and significant damage to his oesophagus already. Yes, I have cried quite a bit.

They did not/ could not answer many questions I had, like why has he got it at 2 1/ 2. How much damage?? how much pain is in?? how long will it last?? Why are his nappies so bad?? No, none of those questions were answered.

The only thing I can take away is that I fought for my child and for the first time, in a v long time, I am proud of myself. I hopefully have prevented him getting worse. Saying that, he won't take the ranitidine, so no more help in preventing the damage.

Sorry for not being on here recently, but my head has been quite muddled.

I wish you all the best for all you children. Concentrate on the answers!! Unfortunately, we never got any answers for emily and she still suffers with nausea and we have no idea what it really means to her. But yes, the long long fight continues for her I guess.

love to you all

A X

Hiya, I'm glad you got some answers and well done for fighting on! Its not been easy but you did it!

I hadn't realised he had oesophagitis - i'm sorry to hear that. Can I ask how they are treating it as they suspect thats what they'll find in my youngest son when his scope is done?

Hope u r ok,

Kx

Hi Angela

I haven't got a magic answer but we were told to offer sweets if thats what it took to get the medicines down them. A few sweets are better than the consequences of not having the medicine. does he have some favourite sweets you could offer him? we do medicines before teeth cleaning so the sugar from the sweets is cleaned off pretty quick anyway.

have you tried flavouring the solution? sometimes the instruction leaflets contain suggestions on what can be mixed with it e.g squash or you can ring the manufacturer and ask? We used to flavour the omeprazole and we flavour the nalcrom and lansaprazole with strongish squash.

Poor daniel - I think the nights are always the worst - for both them and the parents!  Does he eventually calm down if you let him sit up right for a bit? We went through a phase where our youngest was like this, at a similar age too, and we ended up sitting him up on our laps in our bedroom, with the lights down, and we put the tv on to distract him.  Sometimes we'd even just pace in front of the tv. We'd rap him up warm with a blanket round both of he and us and give him sips to drink to try to dilute the acid.  On very bad nights we'd use pain relief and we were prescribed gaviscon (not that it seemed to work mind you).  

Once he calmed down he'd dose off (eventually, but could take hours!) and then we'd try to get him back to bed.  The problem is that it does eat up your evenings and means you get to bed really late but we found  trying to get him back in bed whilst in pain was just pointless and stressful. One of you could be with him calming him and the other could get all the jobs done downstairs? 

We ended up co-sleeping with our boys for years because of their disturbed sleep and when the pain is bad we often still do.

I'm sure you've considered all this so sorry if these aren't new ideas.

Kitty

xxx

Hi Angela

Aww these evenings are so crappy aren't they? We have them. Rube either wakes before midnight and is up for 3-4 hours (which I prefer - a late night is better than no night) or wakes after midnight and is then up. For good. GAH.

We just let her get up and have a bit more daytime. Her problems are concentrated more in the bowel, and if we keep her still in bed even for two or three hours, it doesn't work. She wants to sleep, she often says "I'm tired but sleep don't work." Then the minute you let her move around, the wind comes out of her in streams.

I always worried that we'd make her into a naughty child by letting her get up and play and run around at night, but it's a load of rubbish. Now she does have comfy nights she either sleeps all the way through, or if she does wake up for a bit, she just plays on her own in the cot for a while and then goes back to sleep without even calling for us. It's all about discomfort in my opinion. When she was very tiny and didn't sleep at all, she and I used to go and put our coats and wellies on over our PJs and go and feed the ducks, have a go in the park opposite our house if it was a bright night - what's the point in suffering in the dark and being miserable. I say again - she is an outstanding sleeper when she's comfy. No messing. Also, if I rock her or have her sleep on me, with me helping her, I get more and more tired and she doesn't. Better that we play and we all get knackered and then she eventually sleeps, than that we keep her still, problems aren't resolved and she gets rested and therefore less likely to sleep because she's had enough...it's just our take on it.

If she says she wants to go to bed, but she can't sleep yet, we put on a story or music CDs for her. Helps with the crying.

Meds - we use seedless jam. I think Kitty's idea of squash is a good one. We take mock-up doses. We promise teethbrushing afterwards. We cheer and go nuts whenever she takes it. Sometimes I just have to say she has to have it and I can't do anything about it, if it's so gross I can't help the taste. She now always says, "It's for da tummy." This is true. ;-)

Best of luck with it - those evenings are gruelling. Just gruelling. Remember we're doing it too, you are not on your own.

xxx

Cath

Cath - little one born 2009 has inflamatory bowel and colitis...

The jam we use is Tiptree Blackberry Jelly - very strong and sweet. Poor little man. It's jolly hard lines for them having to take all these things. I remember having to take the most awful meds as a kid (had total collapse in my gastro-intestinal health when I was eleven) and it was so demoralising and grim. I always used to feel as though any moment where I didn't actually feel sick I was being force-fed some disgusting concoction that made me feel sick! Bah.

You always get people who just sheer don't get it. My Ma is really supportive, but I had a conversation with her yesterday, discussing Ruby's night sweats which Dr Shah has talked to us about and warned that there can be a link to reduced bladder and or bowel control and so we're thinking carefully about how to approach potty training. I referred to a friend of mine who's allergy/bowel affected 7-year-old is still not dry at night - they're doing fine, but it's a recognised part of the problem and it's good to be gently ready for these things. She immediately cut in with, "Oh, Tim (my brother) wasn't dry at night for ages." I explained that it's part of pattern Dr S sees with the night sweats. "Oh, he used to sweat a lot, too." By this point I'm grinding my teeth. I point out that it's pretty difficult to hear people dismiss symptoms that a renowned expert has addressed with us as things that happen to any child. I point out that one of the things that upset us most early on was people dismissively saying "Oh, babies cry." She carried on hammering the bloody issue until I reminded her that we only take medical opinions from Dr Shah and Ruby's GP. That shut her up. It is quite difficult to get people to just back off with their own 'expertise' at times. I was just trying to have a quiet, reflective chat about how to manage Ruby's expectations of herself and gentle our own expectations of her etc. But it has to turn into a debate about how many of Ruby's symptoms are truly a reflection of her condition and how many are just normal things.

As I'm sure you've found - no matter what's going on with our kids, whether it starts at the tummy, or leads you back to it, tummy is always a factor. We've had a number of medical and childcare people shocked by her pain sweats - both in terms of the temperature spiked and in terms of the quantity of fluid lost and the speed of this. Quite frankly I'm disappointed in myself at how quickly I rise to this kind of Ma-conversation irritation but I've learned I can't seem to stop myself feeling awful about it.

Bah. Plus I always have in the back of my mind that whenever my Ma irritates me that one day I'll wind Ruby up like this and she'll be sitting next to me when I'm trying to say comforting, wise things and she'll be wanting to poke me in the ear. Sad. How will we avoid driving our kids potty like our parents well-meaningly do to us?! And that has nothing to do with poorly tummies. It's straight-up family politics!

Best of luck with the meds. Just the fact that you are keeping trying different things to help him means you are a committed, loving, wonderful Mama. It's us and the kids against the demon tummies!

xxxx

Cath - little one born 2009 has inflamatory bowel and colitis...

Hiya

He is having both ends done and biopsies throughout I think - the main concern is the upper end but as he's had troubles in the colon I understood they'd do both at once.

I don't think they are expecting to find reflux oesophagitis and have talked about eosinophilic oesophagitis as they think he had eosinophilic disease affecting his colon.

I agree that you have to try to ignore others when it comes to nighttimes. Getting through the night as best you can, in your own way, is all you can do. 

re: Daniel's medicines - have you tried hiding it rather than him knowing its medicine time? You could hide it amongst something yummy like melted chocolate (dairy free of course) or in a favourite drink and pretend its time for a treat rather than medicine time which obviously fills him with anxiety? does he like juice? If so, could you put it in a small amount of juice in a beaker?

We have an ill little boy so I am expecting to be up most the night tonight so i'll be thinking of you, a few streets away, going through the same thing!  

Kx

Cath - all i can say is - i know exactly what you mean!!!!!!!