Anti-Hinch Tattlers Off-Topic Chat / Support & Insomnia Club! #4

[purplethesurple]

I'm really sorry to hear this 🫂 I sincerely hope whatever it is can be managed? Such a worry, especially with kids.
We all miss each other, but at least we have this thread. There are always lovely supportive nusties to listen or chat to and I hope you have support at home.
Hugs, A xxx

Thank you Magic really appreciate it Hes been diagnosed with crohns disease in Feb and started treatment which has made him horrendously ill but we have pushed on got confirmation today the infusions haven't worked so back to square one and need to find a new treatment for him discussions today of possible surgeries and stoma bag, all abit heavy it's light relief coming on here and laughing at all your daft comments x

 

[☆MagicRoundabout☆]

Thank you Magic really appreciate it Hes been diagnosed with crohns disease in Feb and started treatment which has made him horrendously ill but we have pushed on got confirmation today the infusions haven't worked so back to square one and need to find a new treatment for him discussions today of possible surgeries and stoma bag, all abit heavy it's light relief coming on here and laughing at all your daft comments x

Poor lad. How old is he? (Don't have to say x) but I'm wondering if he is understanding as to what's going on

So he is now off the treatment that made him really unwell and looking to a way forward, however that all sounds daunting & heavy. Would a stoma be permanent?
Sending you a big comforting hug 🫂
I know many of us come here for light relief from the crap of daily life. A welcome distraction, much needed laughs, and like minded company! Xx

 

[anniemouse]

Thank you Magic really appreciate it Hes been diagnosed with crohns disease in Feb and started treatment which has made him horrendously ill but we have pushed on got confirmation today the infusions haven't worked so back to square one and need to find a new treatment for him discussions today of possible surgeries and stoma bag, all abit heavy it's light relief coming on here and laughing at all your daft comments x

Sending you lots of love

 

[Duchessofmanchester]

Thank you Magic really appreciate it Hes been diagnosed with crohns disease in Feb and started treatment which has made him horrendously ill but we have pushed on got confirmation today the infusions haven't worked so back to square one and need to find a new treatment for him discussions today of possible surgeries and stoma bag, all abit heavy it's light relief coming on here and laughing at all your daft comments x

Sorry to hear your little boy is unwell. Hoping his next course of treatment works well.
Look after yourself too and we're always here if you need to talk

 

[geezabreak]

Thank you Magic really appreciate it Hes been diagnosed with crohns disease in Feb and started treatment which has made him horrendously ill but we have pushed on got confirmation today the infusions haven't worked so back to square one and need to find a new treatment for him discussions today of possible surgeries and stoma bag, all abit heavy it's light relief coming on here and laughing at all your daft comments x

I feel your pain. My daughter was diagnosed with Crohn's at 18, it's a horrible disease, finally at 38 (last year) she had an ileostomy, Crohn's stole 20 years of her life, the stoma gave it back to her, I've not seen her look so healthy since she was 16 yrs old. She had all the biologics and the only one that helped a bit was humira. I truly feel for you.

 

[influbored]

Thank you Magic really appreciate it Hes been diagnosed with crohns disease in Feb and started treatment which has made him horrendously ill but we have pushed on got confirmation today the infusions haven't worked so back to square one and need to find a new treatment for him discussions today of possible surgeries and stoma bag, all abit heavy it's light relief coming on here and laughing at all your daft comments x

So sorry to hear you and your boy are having a tough time. My brother had emergency surgery for his Crohns several years ago and ended up with a temporary stoma. He's now managing it with medication and back working after over 10 yrs of back and forth to the consultants. Sending hugs, N x

 

[Miss Ophelia]

Miss seeing you nusty trolls over on SWWNBN. had some not so great news about my sons health today feeling abit lost. Hope everyone is okey

just seen this sorry to hear about your son, a worry for you all, hoping for better news from drs I know my sister had a temporary bag and it reversed six months later and thankfully it has help still has to watch what she eats, good luck with drs always someone here.

 

[purplethesurple]

I feel your pain. My daughter was diagnosed with Crohn's at 18, it's a horrible disease, finally at 38 (last year) she had an ileostomy, Crohn's stole 20 years of her life, the stoma gave it back to her, I've not seen her look so healthy since she was 16 yrs old. She had all the biologics and the only one that helped a bit was humira. I truly feel for you.

That's great news about your daughter I am really pleased for her It truly is awful this time last year everything was fine he was perfectly healthy 13 year old (or so we thought) it seemed to have progressed so quickly he's a shadow of himself now the drugs have made him so ill unfortunately his body is just rejecting everything at the moment but we keep moving and are getting ready to start a new round of a different treatment that will hopefully work!
---

Poor lad. How old is he? (Don't have to say x) but I'm wondering if he is understanding as to what's going on

So he is now off the treatment that made him really unwell and looking to a way forward, however that all sounds daunting & heavy. Would a stoma be permanent?
Sending you a big comforting hug 🫂
I know many of us come here for light relief from the crap of daily life. A welcome distraction, much needed laughs, and like minded company! Xx

He's 13 so very understanding luckily he can come to me and dad openly so wasn't embarrassed to say he was loosing blood and that's how we started. Yes they put him on a drug which we went weekly for infusions to the hospital his body rejected it so they doubled the dose and gave us a different drug to inject at home which also didn't work so now we are waiting to try a new drug which he starts in two weeks. I think its just trial and error to which suits your body best. Hopefully would not be permanent they think having the stoma would basically calm all his insides down and give them a break if that makes sense BUT we are not at the stage yet

 

[BeeHappy]

That's great news about your daughter I am really pleased for her It truly is awful this time last year everything was fine he was perfectly healthy 13 year old (or so we thought) it seemed to have progressed so quickly he's a shadow of himself now the drugs have made him so ill unfortunately his body is just rejecting everything at the moment but we keep moving and are getting ready to start a new round of a different treatment that will hopefully work!
---

He's 13 so very understanding luckily he can come to me and dad openly so wasn't embarrassed to say he was loosing blood and that's how we started. Yes they put him on a drug which we went weekly for infusions to the hospital his body rejected it so they doubled the dose and gave us a different drug to inject at home which also didn't work so now we are waiting to try a new drug which he starts in two weeks. I think its just trial and error to which suits your body best. Hopefully would not be permanent they think having the stoma would basically calm all his insides down and give them a break if that makes sense BUT we are not at the stage yet

Sending love and hugs to you. It‘s a horrible disease and I hope you are soon able to find the right course of treatment for your son to make it manageable xx

 

[purplethesurple]

Thank you everyone

 

[geezabreak]

That's great news about your daughter I am really pleased for her It truly is awful this time last year everything was fine he was perfectly healthy 13 year old (or so we thought) it seemed to have progressed so quickly he's a shadow of himself now the drugs have made him so ill unfortunately his body is just rejecting everything at the moment but we keep moving and are getting ready to start a new round of a different treatment that will hopefully work!
---

He's 13 so very understanding luckily he can come to me and dad openly so wasn't embarrassed to say he was loosing blood and that's how we started. Yes they put him on a drug which we went weekly for infusions to the hospital his body rejected it so they doubled the dose and gave us a different drug to inject at home which also didn't work so now we are waiting to try a new drug which he starts in two weeks. I think its just trial and error to which suits your body best. Hopefully would not be permanent they think having the stoma would basically calm all his insides down and give them a break if that makes sense BUT we are not at the stage yet

My daughter's stoma is permanent, a few days before her op a CT scan showed what they thought was cancer and they may have needed to also remove her kidney, thankfully it wasn't cancer but inflammation, so a lot was removed. She's happy to keep the stoma but she'll still need more surgery to give her a Barbie butt. I had never seen someone so ill, at her worst she weighed just under 5 stone, they more or less accused her of deliberately starving herself, put her under the care of mental health. Nobody listened to her. It was a horrendous time.

 

[Turmeric123]

My daughter's stoma is permanent, a few days before her op a CT scan showed what they thought was cancer and they may have needed to also remove her kidney, thankfully it wasn't cancer but inflammation, so a lot was removed. She's happy to keep the stoma but she'll still need more surgery to give her a Barbie butt. I had never seen someone so ill, at her worst she weighed just under 5 stone, they more or less accused her of deliberately starving herself, put her under the care of mental health. Nobody listened to her. It was a horrendous time.

Omg that mist have been horrific poor girl and poor you

@purplethesurple I hope your boy gets sorted asap xx

 

[purplethesurple]

My daughter's stoma is permanent, a few days before her op a CT scan showed what they thought was cancer and they may have needed to also remove her kidney, thankfully it wasn't cancer but inflammation, so a lot was removed. She's happy to keep the stoma but she'll still need more surgery to give her a Barbie butt. I had never seen someone so ill, at her worst she weighed just under 5 stone, they more or less accused her of deliberately starving herself, put her under the care of mental health. Nobody listened to her. It was a horrendous time.

Oh god how awful! my boy has lost 2 stone in just under 3 weeks but he had gained a stone and a half when on steriods for 4 months so he's just back to a normal weight for him now fingers crossed he doesn't loose anymore too quick, he's had another iron infusion today so feels on top of the world this evening bless him and actually got a bit of colour in his cheeks which is nice to see. It's an awful disease x

 

[Sh1tRollsDownHill]

Oh god how awful! my boy has lost 2 stone in just under 3 weeks but he had gained a stone and a half when on steriods for 4 months so he's just back to a normal weight for him now fingers crossed he doesn't loose anymore too quick, he's had another iron infusion today so feels on top of the world this evening bless him and actually got a bit of colour in his cheeks which is nice to see. It's an awful disease x

It is a horrible disease, and a lot for your young boy to be going through.
My friend suffered from her early teens and the doctors didn't believe her either, it actually sent her a bit crazy in the end and she needed therapy. When they did get round to testing for crohns she had lost so much weight she was unrecognisable. They then put her through years of different drugs and treatments, non of which helped, some made the symptoms worse. She begged them for a stoma but they were always reluctant to go that option, she spent most of her 20s and early 30s in hospital and missed out on so much. Finally she got her beloved stoma a few years ago and she's a different person, she loves having a bag it's given her a great life, she says it's her only bag of tit she has, all her worries are gone.
A stoma seems like such a drastic procedure but when it gives you instant relief from all the suffering then doctors should be more willing to try it sooner rather than putting patients through years of drugs and tests.
Good luck to your boy, hope the iron transfusion keeps him going a while and he's put on the right path for him by the doctors very soon.
---

My daughter's stoma is permanent, a few days before her op a CT scan showed what they thought was cancer and they may have needed to also remove her kidney, thankfully it wasn't cancer but inflammation, so a lot was removed. She's happy to keep the stoma but she'll still need more surgery to give her a Barbie butt. I had never seen someone so ill, at her worst she weighed just under 5 stone, they more or less accused her of deliberately starving herself, put her under the care of mental health. Nobody listened to her. It was a horrendous time.

I wonder if this is a common accusation, so similar to my friend.
Doctors thought she was making herself ill at one point!
Crohns obviously isn't easy to diagnose but the way doctors go about it seems so drawn out.
Sad to read so many stories. Lots of love to all the crohnies and families out there, hope life gets better soon

 

[Duchessofmanchester]

My Dad has Prostate cancer.

Luckily they've caught it early so it hasn't spread but it's been described as aggressive. That's not good is it??
Absolutely sick with worry

 

[xxDimplesxx]

Take time and breathe Duchess. Has he had all of the scans he needs yet? A close family member of mine was diagnosed with another kind in March and it’s taken a while to get everything in place but they’re undergoing chemo now. I thought it would all be really quick but it wasn’t so don’t panic if things take their time, treatment will happen and hopefully it will have a favourable result. Best thing to do is wait and see what the hospital says before you really panic. I know it’s an easy thing to say and a hard thing to do but please try for your Dad and your sake. Thinking of you R xx

 

[mushroomprincess22]

My Dad has Prostate cancer.

Luckily they've caught it early so it hasn't spread but it's been described as aggressive. That's not good is it??
Absolutely sick with worry

Sending you big hugs and lots of love. So sorry to read this. C. Xx

 

[Turmeric123]

My Dad has Prostate cancer.

Luckily they've caught it early so it hasn't spread but it's been described as aggressive. That's not good is it??
Absolutely sick with worry

Sorry to hear that. It's one if the most treatable cancers and I'm sure they will start his treatment ASAP. Ifthey think its aggressive they may just remove it and as it's not spread he may not need chemo/other treatments.

I know it's very hard to do but try not to panic xx

 

[Miss Ophelia]

I concur what the other have said @Duchessofmanchester take a deep breath and count to ten when things get stressful your Dad needs you and you him, gentle hugs and lots of love sent your way, take care someone always here.L

 

[anniemouse]

My Dad has Prostate cancer.

Luckily they've caught it early so it hasn't spread but it's been described as aggressive. That's not good is it??
Absolutely sick with worry

Lots of love, I know of a few men who’ve come through it.