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.

Gobbin that's so good to hear. I've been told mine can be reversed but I'm hoping to manage it until at least Christmas to make sure I'm healed properly. I've still got patches of active disease as well so I'll never be med free but at the moment just being able to eat without pain will be a bonus.

Madam I'm quite lucky as the hospital is 10 minutes away and DH works shifts so will be here a lot of the time for DS. My parents & sister are quite close as well & DS & my nephew are at the same school so my sister will take them to school together. DS is going to stay with my parents & I will also be there when DH is in work as I won't be able to drive for 6 weeks & I'll need help (& company). The liquid diet is not that bad & I can have some very soft food - eggs, mash etc but I am craving toast & a bacon butty but carbs are a massive no no until after the op.

Thanks mrs. His main issue is constipation too. Hes got a big sleep study tomorrow so dh will be at home with you younger2 (18months and 6months)
he has the scopes next week.
I just hope as horrible as it sounds that hes still bleeding.
There was sooo much blood (dark streaks) mixed in his stools and lots of blood in his aspirates too. Otherwise they will just say its irritation

mrs hope the op goes well

how is everyone today??
Do you all have dc?

Ds2 has been to his outpatient appt today. He had problems with hos lungs and skull. Today we found out his ribs are deformed but atm not near his lungs??

What's an ileostomy?

My ds has an gastrostomy

Ileostomy is similar to a colostomy where they divert part of the bowel out of the skin & waste is collected in a stoma bag. Im having it cos I'm having a resection & they want the parts they've sewn back together to heal properly before waste goes through. It helps prevent infection.

Baubles your family is really going through it at the moment. I hope it all works out well for you all. I have a DS - he's 12 in 2 weeks (I'll be in hospital ) and an adult stepson. Luckily my DS is showing no signs of any bowel problems but I keep a close eye on him as Crohns can be genetic and we have major autoimmune issues in my family.

Ohh ok. Thank you for explaining. Wasnt sure. Have you seen too ugly for love on tlc? Theres2 people on there looking for love that have colostomy bags

I remember when he was born and I remember feeling his back stick out more on one side but only told fam as I thought Iwas seeing things. He keeps looking at his hands too which im guessing could be dueto the weird ssensation they can get because of it. Hes my baby who doesnt get a lot of time with me due to ds1 needs :( feel so guilty that I didnt open up about it. It seems like one side is a lot worse than thr other.

Ds had immune problems. He had neutrophil deficiency a few times (dont have a clue what it means) and he has low iga levels due to allergies i think
He had meningitis and sepetcmia as a baby too

He has black specs in his poo atm which im told was digested blood?

Could you do a mini party before you go into hosp? Or maybe even a small party in hosp?

We're having tea at my sisters on Sunday & then when I'm home & on the road to recovery we'll go out for a family meal. DH is off work on his birthday so they'll come in to see me & maybe have a couple of little presents then. Hope you get some answers from the sleep study.

With the blood my consultant & IBD nurse both said if it looks black it's coming from inside whereas fresh red blood is usually from piles or something just inside the bottom. Bleeding from the bowel indicates inflammation so needs to be investigated.

Hes under one of the best gastric paeds in Europe. Dr Mike Thomson. Ds is still alive because of him and I 100% trust him.
so will see what they say. He has sleep study tomorrow as they think he has obstructive sleep apnea and he sees ent and gastrics on Thursday same hosp.
Will have results from sleep study by that time too.

Hes old enough to hopefully realise tje reason of you being in hospital. Sounds like a good plan

Baubles I think half the battle with any illness is finding a doctor you trust and who will be honest with you. I'm very lucky that the IBD team I'm under are excellent & my surgeon is one of the best in the North West. I hear such awful things about others not being able to speak to a nurse when they're having issues and I'm so aware I have great support.

I've explained to DS what I'm having done & why & he's ok with it, although he does get a bit teary when he realises I'll be in hospital for a while. I think that's because he remembers me being rushed in last time & he was whisked away to my sisters. I'm lucky that my family & friends are a great support and I know I'll be well looked after once I've had my op.

Please let me know how your DS gets on, I'll be able to get online while I'm in hospital so I'll pop in from time to time. Take care.

Im from north west too. Have to travel to Sheffield for his gastric care as Manchester childrens is shit for gastrics.
just waiting for sleep clinic to open in an hour got here before rush hour started as he will not cope with all the people and noise

just checking in

how is everyone?

hope sleep clinic went ok for ds Baubles, and good luck MrsPinot- glad everything is planned out for ds this time- so difficult at that age, especially if they're reluctant to discuss Feelings (I have a 17yo ds and at that age he would have sooner dug his eyes out with a spoon)

also to you both

I am lurking on here when not posting...I type out posts but they come out as trite bullshit so I delete them

I'm still waiting for colonoscopy which I found out yesterday will be two days before I get married. Arse!

Aww when you getting married?
Thanks for asking about ds, sleep study was more or less normal so they happy to wait and see if his symptoms of sleep apnea stop with age/growth etc.

Hes been put on sucralfate for hos tummy and liquid paraffin long term too. Will see how this helps and he has an appointment next month but if needs be can be seen in fast track clinic

I always lurk too but dont have much to say sometimes lol. Scared I will kill the thread

Awww well done ds. What do you do about the sleep apnoea day to day? And don't worry about killing the thread! I know from advanced search that there's a lot of people with IBD about- I'm sure more people will find us here sooner or later and keep it going!

Are you both back home now?...must be difficult shuttling from Manchester to Sheffield but good that you've got a great consultant

We get married in May-been together all century and finally got round to it because our dds have been nagging us

The consulant is brill. Hes managed to get hold of a med that is not available in the uk but they have it in from another country!

Tbh hes a lot better with it now. I think hes outgrown it. He used to stop breathing at night and I would watch over him most nights. If he stopped breathing for a little longer than usual I would nudge him.

awww that's nice your tying the knot! I was17 when I got married had ds1 at 18 lol

Can anyone guess how old I am

Hes still bleeding in his aspirates. He looks pale too.dr said he would write to tellus about the bloods they took (full blood count etc)

Sorry, yes we are back home now with a mountain load of washing

Bump

how is everyone doing?
Ds is STILL bleeding so this med isn't helping. Going to email the consultant and ask if hes got the blood results back yet and just mention about the blood.

sorry Baubles I saw your previous post at the weekend and could have sworn I posted aaargh

I blame old age -plus I don't post under my usual name because I'm quite identifiable on here and don't want peeps I might know being burdened with the state of my bowels!

did the consultant say how long the med was likely to take to work? could it be one of those ones that take a little while to kick in?

so glad ds is starting to grow out of the apnoea. That must have been hellish/knackering

I wonder if MrsPinot has been admitted yet?

...good idea to bump as well

I'm going to make sure I bump it every day

I know all the IBD peeps are out there- flipping through mumsnet on their phones when confined to the toilet for hours

Morning all, I'm still here - being admitted at 11am tomorrow & op is in the afternoon. I'm very emotional today, my sister called in after taking nephew to school & I cried all over her. Then I got a card from my Aunty who's had a prayer said for me at mass (I'm not religious but she goes every week) & I cried about that as she's been unwell & has taken the time to think about me. Not expecting to sleep much tonight but hopefully I'll get loads over the weekend.

Baubles what medication is it if you don't mind me asking. Your poor boy it must be very distressing for him. It's bad enough coping with this disease as an adult who can understand what the drs are saying but for a child it must be so confusing. Glad the sleep clinic was ok but travelling to Sheffield must be very tiring for you all. Was no one available at Alder Hey? Please let us know what the consultant says tomorrow. I'll be popping in over the weekend if I am awake long enough.

Madam we got married last year after being together 20 years - needed to be sure I'd got a good 'un & he is - he's been the greatest support over the last few years but especially the last few weeks. He's even given his ticket away for the football tomorrow night

aww Pinot- I'd set the rest of the day aside for a good cry - think what you'll be like next time you're at home. You won't know yourself!

I'm so glad you have family close, for support and practical help. And your DH sounds like a smasher. I haven't been to any weddings of friends who've been together for a long while- most of mine either married years ago or are avowed cohabitors, so I hope we start a trend because free food and booze

do hope the gastro ward is quieter than maternity ward, and that you get a good rest afterwards (my dim memories of hosp stays all involve mat wards- apart from one general ward years ago when I had my wisdom teeth out- the mat wards were full of shrieking babies, and the general one had a handful of alcoholics who came back in at closing time and banged in to all the beds)

what I'm trying to say is: I hope you have some peace and quiet!

good luck love

The Gastro ward in my hospital was ok last time I was in except they brought a lady in halfway through my stay who was an alcoholic & she woke up & decided she wanted to make a phone call at 2am & spent the next 5 hours shouting at the nurses Thankfully she discharged herself the next day. I'll be on the surgical wards this time & was in there a couple of weeks ago as well - it was very quiet at night so I did manage to sleep ok. I'm trying to hold it together but think I might have a bath later so I can have a good winge. Will keep you posted when I can & thanks for your good wishes x

Arghh feel sooo guilty that I sent ds into school today. I dont know if hes coming down with something or if it was the pain but he was just soooo touchy feely. Cried all the way there.
He screamed when we got it. I just cant keep him off every day.

Hes off at least 1day next week,2 days week after has been off nearly 2weeks straight last term etc.
They know his medical problems so will hopefully ring me if im needed.

Hes been put on sucralfate to line his stomach which isnt really working.
Hes still bleeding.

Good luck mrsP. I hope everything goes smoothly for you.
Update us when you feel better x x

madame how are you feeling

Aibu to feel absolutely shit??
I just feel sooo helpless that I cant physically help ds. Hes just so pale and looks frail. He was irritable this morning because of the pain too.
Hea still bleeding albeit not as much as he has but its still fresh blood.
Just waiting for consultant to email back.

+

to top it off ive not bloody stopped bleeding myself for nearly 2 weeks straight. Just had mirena coil put in about 6weeks ago and feel shit

Hi OP - I wanted to post a positive story. I was diagnosed with Crohn's when I was 20 It was a miserable first year-18mths (it took a long time to get diagnosed and find the right drug). Once I was on a good baseline drug (following a stint on steroids) I felt much better.

Fast forward 11 years and I am not off all my medication and 7 weeks pregnant. I've just been to see my specialist and he said I couldn't be in better shape for pregnancy (as far as my Crohn's is concerned). My gastroenterologist (who is a leader in the field) also said that the research is coming on leaps and bounds and he predicts that in 10 years time there'll be a cure!

Of course I sometimes have bad days (very rarely now though). My advice would be to find a good gastroenterologist who you get on with and trust (same with your GP). Make a note of any foods which you think makes your IBD worse and try and avoid those and see if it is makes it better. Good luck.