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

[MadamePapin]

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.

Oh also make sure that your gastroenterologist is an IBD specialist. Some gastros don't have as much experience with IBD. Also if the drugs aren't working - let you doctors know and get it changed. I tried three baseline drugs before I found the one that works for me.

Afternoon all. Just a quick one to say I've had my op yesterday afternoon & all went well. I didn't need the stoma & it wasn't as complicated as he thought it might be. I'm sore & drowsy but so happy I won't need another op anytime soon. Will be back properly after the weekend.

that's good news MrsP

you must be delighted! will you still have as long a stay as planned?

thanks for your positive story tricky [we need a THUMBS smiley]- it's great to hear a success story. I think someone said upthread that no one posts generally when they're feeling well, so it's really good to hear- especially the cure bit

how's ds doing, Baubles? are the new meds working at all yet? Hope so, and that you got him into school for some of this week without any problems (I'm having problems with my ds not attending- but he's in 6th form and it appears to be more to do with anxiety than anything else- you could say it's taking my mind off my guts, at any rate)

I'm fed up (ds aside)- when I saw the GP last for the blood test results, she told me they indicated an IBD, together with my symptoms. She referred me to the local hospital and thought that I could expect a colonoscopy within a month or so. She did warn me that she hadn't been at the practice very long, so couldn't say for definite

I had someone ring me quite soon afterwards to make a booking, for what I assumed was the colonoscopy- I'd have to wait till the end of April but the guy on the phone said that really I was lucky to get that

of course now I've got the paperwork through I've found that it's only for the initial appointment- at the General Surgery clinic, whatever that means

my dsis thinks that means I don't have anything urgent, otherwise they'd put me through a bit quicker. I hope she's right- but I don't have that much faith in our overloaded system (especially after I read the last thread where people were waiting for AGES, with worse symptoms than mine)

it might be nothing. All the symptoms and gripes could be coincidental just a really really EVIL pile

madame -its ridiculous i was referred in april for an urgent colonoscopy by my gp.
had my referral expedited in july by gp and upper gi consultant.
saw lower gi consultant in September ,who agreed i needed a colonoscopy urgently but said the delay was that they didnt THINK it was cancer.
more likely a IBD.
i was offered a colonoscopy in january but have had to reschedule until i stop coughing because ive caught whooping cough.,

god frances

I remember you posted upthread

you must feel like shit is the whooping cough getting any better?

will they fit you in as soon as you're fit? Or do you have to go on another list

thanks madame
i can go hours now without coughing ,but once i start i cant stop and gasp for breath- not something you want to do with a camera up your butt.

i have to phone consultants secretary when i feel better.

Really is shit all the waiting around.
I was soo sure id get an email back today. But nope.
It will be next Thursday now when the dr is back in the hosp.
Hes a busy dr. He only works2 days in the children's hospital at Sheffield. The rest he does ks private. Thursday he has ward round, emergency clinic, meetings, outpatient clinics
friday he has theatre and ward rounds and meetings. So has little time to do much else

wfrances
hope the cough goes soon and that your well enough to have it done. In the nicest way possible lol.

Madame it might be pre-op and they might get you in within 6 weeks of that date? Could be checking all your vitals (bloods, bp etc)
dad has just had an op and thats how it was done here?
Hes had noooo pain all day up until after eating. He ate around 3 cubes of diced chicken and a sip of juice. Ans that's all day

Mrsp glad it wasnt as complicated as they thought it would be. Sending healing thoughts. .....

forgot to add. Ds is passing stringy type poo and there was white in it (stringy- was told allergic reaction to something? But the white is new)
? Any ideas

Hi,
Please can I join this thread ? I've had gastro symptoms for past few years, worsened significantly in past few months. Stomach pain on right side, bloating, noisy gas, nausea, heartburn, not diarrhoea but increased frequency. GP tried me on gluten & dairy free exclusion diet last year and I felt 10times better. When I reintroduced the foods I was completely floored and in bed for days. Blood tests for coeliac are negative. Only thing showing up is worsening anemia. Scan on gallbladder showed no issues there. Some weight loss but suspect only due to being so reluctant to eat due to repercussions. (Am overweight anyway).
GP has finally referred me to gastro thinking along the lines of coeliac or crohns. I have to carry on eating as normal but am wondering if or what it could be. I just want to get to the bottom of it :-(
many thanks for any advice
trigger

oh blimey Baubles

that's so frustrating re the email and waiting around

don't know what white could be- hope someone else can point you in the right direction

hi trigger that really sounds like coeliac disease to me (I was diagnosed 4 or so years ago)-did you reintroduce gluten and dairy at the same time? Or have you tried without one at a time? The blood test isn't all that reliable afaik so you need an endoscopy (my blood test was inconclusive but the endoscopy showed coeliac)

Thanks Madame. I was given no guidance at all about the exclusion. I did it for 3 weeks and cut out gluten first then 3 days later cut out dairy, and vice versa at the end. I had no idea if this was long enough. Am fed up feeling cr*p - literally ! Just want to get to bottom of it. The anaemia really takes it out of me, I can't get enough sleep and I struggle to stay awake. I'm continuing to eat normally and not cut anything out but really hope I don't have to wait too long, doc said it should be within next 4-6 weeks. The only thing the doc picked up on the last time on examination was pain and inflammation on lower right side above appendix.
I just want to feel better !

Baubles - question about the white stringy-ness. Is it like mucus or more solid looking? If it's solid - need to rule out worms. If it's more mucus-like then that's fairly common with Crohn's.

As for exclusion diets etc. I would definitely recommend that anyone who is yet to be diagnosed with IBD goes for an allergy blood test to rule out allergy to any foodstuffs. Don't think you can get through NHS but lots of companies offer them. I know lots of people who have been told to avoid all sorts of random things (like eggs, mango etc) and it's made a massive difference to their bowel movements. Definitely, definitely recommend.

Hi, MrsPinotGrigot!
This is my 3rd day home after 13 days in hospital and a brand new diagnosis of Crohns. I am so weak right now it is unreal but at least the diarrhoea is more under control and I am eating again. The drug cocktail seems to be doing the trick.
I did have terrible pain and diarrhoea this morning so something last night seems not to have agreed with me . I've been keeping a note so the things that I only are yesterday will be tried individually to see which one(s) are to be avoided.
Ive already decided to avoid caffeine as it seems to go through me quickly.
I really hope I don't have it very badly. I just want my life back a bit. I feel pretty lousy right now but not nearly as bad as last week and soo much better than the week before.
I suppose it just takes time. I've learned I'm not a very good patient!

I will look into private allergy tests.

It wasnt solid like but was more liquidy looking. We've had all the mucusy poo before too. He has it a lot during and after a flare up.

Just aspirated him and therea bloos still. More than yesterday.

He was saying it hurts while he was asleep last night too.
Hes woke up all pale and poorly looking and is rubbing his tummy as it hurts.

Trigger I was told cut things out for 6 weeks and slowly reintroduce 1 at a time. It was just dairy we cut out (this was when we wasnt sure about dairy)

ana glad to hear your on the other side! Hope recovery isnt too long.
What did you eat last night thats set you off?

Poor little thing, baubles. Hope he has a better day today.
MrsPinotGrigot, how are you doing?
We had salmon with a honey mango glaze. I can discount the potatoes as I've had them a few times already with no effect. We had some red peppers and green beans with it too. I also ate a Bourbon biscuit and had a glass of fresh orange juice.
That isn't too huge a list. I should be able to narrow it down quite easily.
I feel ok so far this morning. I'm still on 8 steroids at the moment. I suppose the big test will be as the steroids cut down and immune suppressants take over.

Can I join? Wrote a long-winded post then comp died on me so will keep this one brief! I don't know what I have, it's basically urgency related incontinence/diarrhoea IBS? Who knows?? I've had tests inc colonoscopy, barium meal etc and nothing shows up.
I suffered a bad tear with the birth of my dd 6 years ago and although tests show my anal sphincter is supposedly fine, I know that 6 years ago I could hold on and now I have a 30 second window if I'm lucky. This coupled with what appears to be IBS D means I have to plan my life around toilet trips. It's just rubbish.
I have an appt soon to discuss sacral nerve therapy so really hoping this can help as physio/bio feedback etc didn't help[ at all.

Shrunken welcome to the thread

im sure someone here will be able to help

was told that meds ds is could be interacting and could cause toxins to go in the blood stream!

Hello all, I'm still here lurking & reading. I'm doing ok, still quite sore & I haven't been to the loo yet - they're now giving me something to help speed that up. As soon as I go we can discuss going home so hopefully I'll be out of here before the weekend. Best of all though - I'm eating relatively normally & no pain! It's been so long I'd forgotten what it was like . Hope everyone is ok

Glad to hear it, MrsP.
I'm on 45mg prednisone daily and if it is edible, I want it. It is ridiculous how hungry I am. I've gone from gaunt to having a puffy face, in a couple of weeks.
Lit is less sore and I'm not in the loo as often so I think it is working but the hunger and the inability to rest then crashing out is not nice.
They didn't start the azathioprine in hospital because my liver function was a bit off. They spoke about blood tests and starting me on it but I have no clue what is happening. I'm at the clinic in 3 weeks time so I suppose I'll find out more then.

Glad your able to eat mrsp
hope you get home soon

ana good luck at next clinic appointment

ds is still gettinf odd bits of pain
how is everyone else??

Morning all - I'm home . On my phone so can't answer individual posts but I'm ok (I think). I'm also a very bad patient, DH keeps getting annoyed with me as I won't stay put! Staples come out next week & my scar will apparantly be 'very neat'- I do like a surgeon who takes pride in his work . I'm still sore & tired & think I might have a bit of a water infection - common after a catheter I think. Am expecting the district nurse later to check my wound & drain sites so I'll speak to her. Scar is below my bikini line as well.

Best part of this is being able to eat without worrying about pain etc. DH now has a list of stuff I want to eat starting with a soft boiled egg & toast soldiers for my lunch. He's a real star at the moment & DS was thrilled to see me when he got home from school - although I wasn't his best birthday present 'it was quite close'

Just watching This Morning & they're talking about waterworks - let's hope they do a better job than they did about 'tummy issues' last week. You'd have thought IBD was just a bit of an upset tummy & the same as IBS listening to them. Yes I'm looking at you Eamonn Holmes!! (Disclaimer I may have been a tad tetchy having just had part of my intestines removed!)

Hope everyone is doing ok x

Saw this on my FB feed before & it made me laugh - not too hard though cos it hurts a bit

Lmao.
Thank you for that!

glad your home now too!

got a phone call from his gastro. They doing emergency scopes and bloods. Thalasemia anf pernicious anaemia are being thrown into this too and they doing another ph probe study too

Baubles was just coming back to ask how your DS got on yesterday - I'm not sure what day it is atm. That does not sound good at all, although I have no idea what some of those things are. It must be a very stressful time for you all. Your little boy is very brave & I can't even begin to imagine what you & your OH are going through. The worst thing DS has had was his tonsils out when he was 2 & I was a mess for days before & during the op but it was over so quick & he soon got better. Sending you all hugs & xx