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Original poster

handy holdy, shits and giggles ??IBD etc thread-anyone in?

83 replies

MadamePapin · 16/02/2015 11:43

I know there was a long running thread a while back with loads of info on re IBD- I wonder if there's anyone still around who would like to join another one

I went on Dr Google AND Dr Mumsnet and self diagnosed

now I've had some test (blood and poo) results back and the GP thinks so too. Am now waiting for a colonoscopy

while I'm twiddling my thumbs (and staying within running distance of the toilet) has anyone got anything to tell me- pref positive, but I can take negative. Honest.

OP posts:
LostMyBaubles · 16/02/2015 11:55

Can I join on behalf of my ds??

Hes 4. We are sure he has something along the lines of ibd (chrons/colitis)
hes currently in a flare up. Poor lil man hasblood in stool and in his aspirates (hes got a feeding tube too and aspirates is tummy contents) hes had a few scopes, hes due urgent colonoscopy and endoscopy next Wednesday. Hes been like this for about a month now.
Gets worse when he eats food.
Hes got asd too.
Hes currently got pain and paracetamol does fuck all.

Have you got the link for the thread you mentioned?

Good luck with the scopes.
Ps I plan on making this my 2nd home lol

LostMyBaubles · 16/02/2015 11:57

Ps he suffers from low iga levels due to allergies and his gut stops working when he has dairy which he definitely hasnt had in the past at least 3months.
His constipation gets worse and reflux does too when hes had dairy.

Pharmacist thinks hes got that thing where yout allergic to nearly all food cant remember the name

Original poster
MadamePapin · 16/02/2015 12:19

awww poor little lad!

and poor you Baubles - that must be a struggle (((unmumsnetty hugs to the pair of you)))

how is he with scopes and other procedures? do they give him anaesthetic?

I'll poke around and find the thread- I don't know how useful it will be because as far as I can remember it was all adults...

there might well be something in the child health section re Chrons/colitis- have you looked there?

OP posts:
Original poster
MadamePapin · 16/02/2015 12:23

don't know how to link to a thread Blush

hold on see if this works

OP posts:
LostMyBaubles · 16/02/2015 12:31

Thanks.
yep hes always under general anaesthetic when he has them done.
Hes hungry atm and hes got his feed on too but he still wants something orally but I know it will just cause him pain. Will see if that fills him up if not will give him something plain. Hes into strong flavours and wants chicken curry Hmm

thanks will have a look
Do you have certain foods that set you off?

Delphine31 · 16/02/2015 13:10

A positive story...

I was diagnosed with ulcerative colitis in September 2010. I was very unwell with it. Months on end of 20+ bathroom trips a day, blood loss, lacking energy etc.

It all seemed quite bleak with lots of hospital visits, tests, trying different medications but eventually (though I have to admit it took over a year) my consultant hit on the right combination of meds for me and things gradually came under control.

Now, I feel healthier than ever before. My colitis seems to be firmly under control for the moment and I am making the most of it. I had a tough time with it for the first couple of years after diagnosis but the overall impact on me now is that every day that I'm well, I recognise that and I feel grateful for it. It's only a fleeting 2 second thought, but I think it has made me a happier person because I appreciate that I can get on and enjoy my day.

Of course, I know the nature of IBD is that it'll most likely flare up again but I'll be better armed to deal with it. I'm getting more exercise now that ever before which I'm hoping might help and I have confidence in my consultant to find the best treatment for me. I've done lots of research on surgery options so that if it ever comes to that I'll be as mentally prepared as possible. But for the moment I'm just making the absolute most of being well. Smile

There's a lot of scary info on the Internet because people rarely write articles/forum posts when things are going well, so hopefully my positive post can balance that out a little.

Fingers crossed it's a smooth journey to finding your perfect meds cocktail, and one thing I can reassure you on is that although they're obviously not much fun, colonoscopies are perfectly manageable and absolutely worth it for a diagnosis.

Hmm I started writing this an hour ago and then got sidetracked. Hope my post is still relevant to the path the thread has travelled down since I read it!

Original poster
MadamePapin · 16/02/2015 15:19

Hes into strong flavours and wants chicken curry hmm that must be hard, Baubles, when he wants to try tasty stuff

I can't imagine trying to get a 4yo to make the link between eating something yummy/feeling terrible Sad

I don't know what sets me off (if anything in particular)- I'm just starting off and still hoping it's just really bad piles

THANK YOU Delphine for your positive take!

I've had a quick look and found that even the nhs real life accounts are pretty grim

mine is- if that's what it is- very mild atm compared with what you went through before your dx, though it has been grumbling on for a while. The worst factor so far has been the toilet misses and feeling all floppy and nyeh. I feel a bit shit after a week of diarrhoea which seems to be getting more and more frequent, though this is the longest bout I've had.

Luckily I'm currently doing up our house and a SAHM to school age children so don't have to be anywhere- apart from a 5 mile total school run every day (that's 4 journeys, not 5 miles 4 times!)- I would be stuffed if I had to get to work as well

I think it has made me a happier person because I appreciate that I can get on and enjoy my day.

that is just fab Smile

thank you!

OP posts:
wfrances · 16/02/2015 17:14

me
ill join you

im waiting for my colonoscopy
should have had it 4 weeks ago ,but ive got whooping cough.

MrsPinotGrigio · 16/02/2015 18:00

Hi I'll join - I have Crohns & I'm having surgery next week to remove a fistula & a stricture. Apart from the last few months I've been really well since my diagnosis 3 years ago. Hope you get good news x

Delphine31 · 16/02/2015 18:47

The feeling meh is very difficult to handle. It's a difficult balance between resting more than normal to recharge and sitting around doing nothing - which is likely to make you feel down. I've never missed a day of work because of my colitis but have had to work at home on days where leaving the house just wasn't possible.

It's important to keep going out and about and doing the things you enjoy (if necessary, with a spare pair of knickers and some baby wipes just in case!)

Not getting to the loo in time was a hell of a shock the first time it happened. But it only happened twice and I got better at recognising the signs. I developed a sense for my ten minute warning symptoms. I got better at walking into random pubs, hotels etc. and either sneaking in to use their facilities or asking nicely. It is stressful but you learn how to deal with it.

One diet change which made an almost instant impact for me was cutting out caffeine, which because it's a stimulant really doesn't help matters!

wfrances · 16/02/2015 21:23

cutting out caffeine helped me to.

Original poster
MadamePapin · 16/02/2015 21:36

wfrances that's a shitter

and you must feel double lousy, with whooping cough as well Sad

thanks- and the best of luck with your surgery MrsPinot. How long are you expecting to stay in? I'm assuming this is the first procedure/hospital stay you've had. Hope your recuperation is quick and that you have plenty of rl help and that you can mumsnet from the ward

OP posts:
Original poster
MadamePapin · 16/02/2015 21:36

wfrances that's a shitter

and you must feel double lousy, with whooping cough as well Sad

thanks- and the best of luck with your surgery MrsPinot. How long are you expecting to stay in? I'm assuming this is the first procedure/hospital stay you've had. Hope your recuperation is quick and that you have plenty of rl help and that you can mumsnet from the ward

OP posts:
Original poster
MadamePapin · 16/02/2015 21:36

wfrances that's a shitter

and you must feel double lousy, with whooping cough as well Sad

thanks- and the best of luck with your surgery MrsPinot. How long are you expecting to stay in? I'm assuming this is the first procedure/hospital stay you've had. Hope your recuperation is quick and that you have plenty of rl help and that you can mumsnet from the ward

OP posts:
Original poster
MadamePapin · 16/02/2015 21:36

wfrances that's a shitter

and you must feel double lousy, with whooping cough as well Sad

thanks- and the best of luck with your surgery MrsPinot. How long are you expecting to stay in? I'm assuming this is the first procedure/hospital stay you've had. Hope your recuperation is quick and that you have plenty of rl help and that you can mumsnet from the ward

OP posts:
Original poster
MadamePapin · 16/02/2015 21:36

wfrances that's a shitter

and you must feel double lousy, with whooping cough as well Sad

thanks- and the best of luck with your surgery MrsPinot. How long are you expecting to stay in? I'm assuming this is the first procedure/hospital stay you've had. Hope your recuperation is quick and that you have plenty of rl help and that you can mumsnet from the ward

OP posts:
Original poster
MadamePapin · 16/02/2015 21:36

wfrances that's a shitter

and you must feel double lousy, with whooping cough as well Sad

thanks- and the best of luck with your surgery MrsPinot. How long are you expecting to stay in? I'm assuming this is the first procedure/hospital stay you've had. Hope your recuperation is quick and that you have plenty of rl help and that you can mumsnet from the ward

OP posts:
Original poster
MadamePapin · 16/02/2015 21:44

Aaaargh! Now my laptop has gone all incontinent Grin

I'm on my phone to see if I have better luck

Delphine I already have a poo emergency kit (learned the hard way- thought now my kids were big that meant my days of carrying spare clothes were over!)

I'm going to have to learn to ask people to use toilets in pubs and so on. I'm normally a bit daft about public toilets and-this sounds riDICulous-really reluctant to ask. I'm the sort (usually) who would rather wait till I got home than actually ASK to use a loo

I'm going to have to get over that, aren't I

OP posts:
gobbin · 17/02/2015 00:04

Madame if you join NACC you can get a Can't Wait card which is useful for helping you get access to toilets as, even if you're polite, it's common to be refused on spurious health n safety or security grounds (Yes, Boots in Ross on Wye, I mean you!)

www.crohnsandcolitis.org.uk/get-involved/Membership/benefits-of-membership

I have Crohns, am waiting for a date for my ileostomy reversal. There are plenty of IBDers on MN, just ask if you need any answers. I had a gamma scan last Sept which completed my scan 'bingo' card as it was the only one I hadn't had (for the Crohns) lol. The radiographer laughed when I told him.

Delphine31 · 17/02/2015 09:05

Believe me, you'll get over your loo issues. I went from never wanting to do a poo at someone else's house or in public toilets, to just being grateful that a bog is available!

I also got myself a RADAR key which gives access to disabled toilets. I don't use it where there are standard toilets easily available but it's a godsend when you're out and about somewhere more rural and the village's public loos have been locked up for the night.

I second the advice to look at the crohns & colitis UK website. It has info on radar Keys and loads of different leaflets of info.

MrsPinotGrigio · 17/02/2015 09:12

Baubles you're poor little boy - it must be hell watching him go through all the tests etc. I'm on a liquid diet at the moment to rest my bowel before my op & it's killing me going without proper food, I can't imagine how hard it must be for a baby. I know it's the normal option for children as they're too young for the meds & who would want their little one taking a chemo type drug alongside massive doses of steroids? Have you had a look at the NACC website? They have loads of info on there & their FB forum is amazing - I've had loads of great advice from there. I really hope your little boy feels better soon & you get some answers from his scopes. Good luck & Thanks for you.

MrsPinotGrigio · 17/02/2015 09:48

Madam yes its my 1st surgery but unfortunately not my 1st hospital stay. I was in for nearly 3 weeks a few years ago with a very bad flare up & for 3 nights a couple of weeks ago with an obstruction - only just avoided emergency surgery then hence my op next week. I saw the surgeon yesterday for all the gory details & I may be in up to 2 weeks as the surgery will be a bit more complicated than he originally thought. I'll need a temporary ileostomy so I'm now coming to terms with waking up with Sid the stoma - still if it makes things better that can only be a good thing plus I'll be a happy girl if I can actually eat properly Smile. The hospital does have wi-fi so I'll be able to keep in touch.

I would also recommend the NACC website, Their leaflets are brilliant & I got loads of info from them when I was first diagnosed.

I'm lucky that I haven't had any problems with accidents but my issue was primarily constipation - never had diarrhoea until the fistula formed during my bad flare. I do however make sure I know where the loos are when I go out (just in case).

Original poster
MadamePapin · 17/02/2015 12:33

gobbin lol at scan bingo

and Angry at bog refusal on elf and safety grounds wankers

I have had quick skim on the C&C site. It does look v useful

MrsPinot god two weeks!...is your hospital near you? And yy to being able to eat properly- restricted diet is a pita. I'm coeliac so used to being careful, but coeliac diet must be walk in the park compared with what you must be going through

Flowers
OP posts:
Original poster
MadamePapin · 17/02/2015 12:34

eeep!

just saw you're on liquid diet. Hard work!

OP posts:
gobbin · 17/02/2015 13:36

Pinot your bag will be life-changing. 8 months down the line I can see why people keep them permanently. Although I'm due for reversal, I've still got loads of patches of strictures and active disease, so I've asked the surgeon if I can have a bag forever if things don't settle in the next couple of years.

I can eat literally anything, including beef and steak which I could never touch. Iron levels are best they've ever been ha! If you need any bag or op related info, pm me.