Ulcerative colitis advice please

[roundthebend4]

We not since long been back from addenbrooks and the gastro paed is pretty sure that ds, who is 13 has this and that his bowel is likely to be in a bad way.

Anyone else live with it , have ateen with it any advice to say its floored me is understatement

I have crohns disease which is similar, have a look at the NACC website. Lots of information on there.

Hi Roundthebend4, really sorry to hear about your DS. I have UC but am older than your son. I feel really sorry for him having being diagnosed so young, must be so tough on him, poor kid.

It was a big shock to me when I got diagnosed and as I say, I was older, so I can only imagine how you are all feeling right now.

I hope they are able to start some kind of treatment for him soon that will make him feel a lot better.

I guess my only advice is that there is so much conflicting advice out there which makes it a tough disease! All sorts of websites/forums/people tell you that if you should stick to this kind of diet with UC but then another tells you the exact opposite. One thing I have always found a bit frustrating is that there are no exact answers. I've always wanted to know exactly what I should/shouldn't eat during a flare up; well it varies from person to person. Something I can tolerate might be really bad for your DS.

I've had a range of different treatments over the years. I've had long periods of it being really well controlled and then other times where it's played up a bit. But hey, I have a beautiful DD, have travelled, played sports, go out with friends - normal life apart from times when I feel the need to take it a bit easy.

I've written you an essay here so I'll stop now but if there's anything you want to know, I'd be happy to share my experiences with you if it were any help.

Best wishes to you and your family, really tough time for you all.

I have UC/Crohns (they never did quite work out which).

In my case, as long as I remember to keep taking my tablets then I am completely fine.

Have they indicated how severe they think it is? (Mine was pretty mild even at its worst).

thank you am going to call the information line tomorrow morning when open.Know wont get definte dx to after the cameras but just want to be forwarned ,Dr was very sure that ds will have it descibed it as text book case

Thank you all for answering
Paeds concerned as ds passes a lot of blood and mucus and sometimes just mucus when has wind and has fait bit of pain averages 5/6 times a day needing the toilet

Ds is fairly tall but very underweight despite high fat high carb diet and me giving him build up shakes on top of worked out on average he has 4000/5000 calories a day.

Was the way we sat there and consultant said i want him in fast for cameras/biopsy and checked his diary and said next week , kinda use to fast meaning couple of months

Can any of you tell me how quick you had the confimation results of biopsyetc

sorry bit of essay but trying get my head round it so can answer ds questions honestly

I had a colonoscopy with biosies taken.

Straightaway the Dr told me that it looked like a clear case of UC and so I started the tablets that day. A week or so later I got the results of the biopsies, by then it was clear that the tablets were working well.

biopsies no biosies

What tests are they doing to confirm what they suspect?
After I had my first coloscopy, the consultant came in and said it was UC almost straight away. Blood tests etc also back this up - there is some indicator in your blood that shows whether the disease is active or not (sorry, all the terminology etc goes out of my head. I swear I didn't even know I HAD a bowel until I got diagnosed). The blood/mucus/weight loss all sound pretty symptomatic of it.

When I've had other tests during flare ups, the results usually take a couple of days to come in, depending on what procedure they have done.

Sorry, meant colonscopy!

They have taken lots of bloods today and he is having a colonscopy next week he booked it in there and then and will take biopsies to.
There also going to put a camera down his throat to look into his stomache and will take biopsies on way down and from his stomache to

There doing it all under a GA but the Gastro paed is pretty certain called him text book case

Yep, they should be able to tell you pretty much straight away.

Poor kid - but at least once they know for certain, they can start treatment and he'll feel a lot better for it.

FWIW IME the absolute worst part of the whole procedure is the stuff they make you drink the night before to 'clear out your bowel'. Not sure it this is any different for kids, but IME he will need lots of TLC. the stuff is VILE. They gave me 2 batches and I only got one down.

nope its no differnace he has senna and has take 50ml (adult dose on bottle is 10 mls) 8am morning before,
then 2 satchets of picolax to take one at 12 and one at 4pm .Dr did laugh when i mentioned school day before
were now refering to it as dynamite laxtive ,and making jokes that he might need take phone into loo to order more toilet roll .is it really that bad though?

I can't remember the name of what I took... just the VILE taste. I physically couldn't get the second does down without retching. I had to phone the hospital as I was really worried they would have to cancel the procedure and that I'd have to do it all again. Fortunately they said it would be fine with just what I'd taken.
As for the 'symptoms', well I think your Dr has put it very accurately .

also stock up some nice food for afterwards. I was starving. Although that may be different after GA.

yes ds was not impressed with the diet required the day before and nothing other than jelly or clear soup from lunch time before this is ds that i call human dustbin

DH was diagnosed with UC when he was 21. After years of hospital trips and steriods and sygmoidoscopies, colonoscopies and enemas etc etc... he finally had his bowel removed just over 8 years ago (he is now 49).

He does a lot for the local IA and National Council. The NACC is a good website and they should be able to put you in touch with your local group.

I find the prep for the colonscopy worse than the colonscopy itself!

Honestly, don't let him venture far from the loo.. even if at first it doesn't seem to be having much effect. Cause it will.. oh god will it! Maybe get him some magazine/new book for the day. And picolax does taste foul, especially the second satchet when you know what you have ahead of you. It is pretty horrible, I'm sorry to say. He'll probably just want to curl up in bed in between running to the loo.

You can eat chicken, eggs, cheese, butter, white bread the day before the bowel prep I think? And tea biscuits?

yeah mind leaflet we got has nothing after lunch except for Jelly

Luckily we are close and he can talk about it trying keep it very lighthearted but truth is he just wants it sorting

I have had the surgery for UC, kind of the last resort medically, but for me it has been fantastic and I have no real problems (had internal pouch for 8/9 years). With my pouch I have done triathalons, 5 day sea kayak/camping trips and a 5 hour gliding flight (relevant as shows I am no longer scared of getting stuck far from a toilet). I let the UC get out of control and didn't tell anyone (was at uni), so make sure you are able to talk to him about all things embarrassing, it will really help!

So even if he needs surgery, it is not the end of the world, although it can seem like it at the time. Wishing him luck!

Hippy, DH has an internal pouch!

Roundthe.. if you need someone to speak to your DS, there are people that will. (DH does this job for the IA/National Council)

Ty bella
,any luck we will get some answers today after colonscopy and endoscopy my main concern at the moment is if they go with steroid treatment ds has a high tolerance level to them due to taking on and of for his asthma ditto immunesupressents to

well ds has had the endoscopy and colonscopy based on clincal prsentation and what they saw today they have dx ds with crohns rather than ulcerative colitus.

|They have taken biopsies to but no results till end of week but hes not expecting to change dx

Are you okay, it can be hard getting the diagnosis? It might feel that it is a life sentence in some ways and he will always have these problems but it isn't, this is the start of improving his symptoms. He'll now get prompt help every time he has a GI problem, a dietician to help him gain weight and be treated as a priority throughout the NHS. He will probably also be able to meet people who have had similar experiences, although IME groups and forums under-represent people who are healthiest. He will have a support nurse who will be able to find a healthy, similarly aged boy he can talk to if he thinks it will help.

Don't worry too much about him having a high steroid tolerance, quite a lot of people with IBD have another immune type condition and the doctors will have come across a similar situation before. Also, try not to act to devastated around him (probably obvious) as I felt guilty for how upset my dad was when I was diagnosed with UC. Come here to vent but tell him that it's great to have got an answer and now things can start getting better. Good luck, you are being a great help to him and doing a great job.

I do feel crappy but ds is handling it very well hes very mature for 13 and is just glad to know why hes had so many problems .me think later tonight will probably hit me

Yes they done urgent referal to dietcian as they feel ds needs put on at least 2 stone hes had look past few days on forum but found there a lot older on one and on the other he feels to old akward age