Strictly Amy - Crohns and me BBC1 7pm 27/8/21

[soooexcited!]

Originally Posted by Floridatilly

Oh my word, I can not imagine how scared your daughter was on her own and how sick with worry you must have been. I am so happy that your daughter is doing well 💗
When was she first diagnosed?
If you don’t mind me asking, is she now clear of Crohn’s because most of her large intestine has been removed?
My sons whole tract is bad so when he almost needed surgery on his bowel they did warn us that he would still need medication due to his upper tract. (I am still learning so I get very confused) my son is doing really well at the moment 🤞🏻🤞🏻

The program is definitely up beat and positive. Although it gives a little insight to the disease I found it focused more on what you can still achieve whilst living along side it. One amazing young woman has very bad scaring from previous surgeries and she is now a model 🤩 I found the program inspiring although I did cry at one point.

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Liv started to tell me she wasn't feeling well in August 2019. We went to Reading Festival and I took one look at when I joined them on the last day and thought you've got Crohns. Shes not great at expressing her emotions and bottles everything up. Her Dad also has it and before I met him had major surgery after a 6 stone weight loss. He was extremely unwell. I took her to see a work colleague when we got back and insisted on a calprotectin poop sample. The result was thro the roof. Instant ref to gastro specialist and multiple attempts at medical management. She reacted really badly to azathioprine and didn't respond to mecaptopurine. She did ok on high dose steroids but couldn't keep popping them. Infliximab was the last option before surgery. After her 2nd infusion she became very unwell. Thankfully her gastro specialist is fantastic and I managed to talk to him within hours to say I felt she'd developed a stricture as was constantly throwing up. Took her to A&E on his advice for an urgent ct scan. To say I was less than impressed is an understatement. She was reviewed by a senior Dr her distended stomach dismissed cannula ripped out and chucked in the bin and told we don't do urgent ct on young women. At this point she was still putting on a brave face and not writhing around in agony so she was deemed well enough to go home. No change overnight but I again spoke to her consultant and took her back and wasn't leaving until she got her ct. Thankfully saw an excellent Dr who listened and she was admitted. Despite the findings on the ct they considered sending her home because this was the peak of covid and thought to be too great a risk to operate. Not a chance in hell they were sending her home. So another call and she had the surgery. Livs an incredible woman who never moaned once, makes me cry reading that back because at the time we just got on with it.
I didnt give you too much information last time we msg as didnt want to scare you when Mason had just been diagnosed. Surgery yes its really scary and awful to see (or not in our case) but it can be life changing. Liv still has to watch what she eats but she's rubbish at looking after herself at times but she's learning. For now the crohns has gone but she knows the reality of the disease is that she's likely to have issues in the future x

[Leia77]

Just watched it. Heartbreaking but uplifting at the same time. In awe of all these brave people working to raise awareness of this awful condition - particularly Amy. Thanks for letting us know about this one.

[stanleycamel]

You have all responded to this thread giving some real insight in living with Crohns either personally or with your family members and how even at the darkest of time you deal with the situation showing fortitude, determination and when it is suitable humour.

I thought this photo may appeal - taken from the local Evening Chronicle before the start of the Great North Run. The Crohns connection is one of the lovely ladies (left hand side) was raising funds for Crohn's and Colitis UK. I sincerely hope they make it to the end and get a huge cheer passing the finishing line.

Floridatilly - thank you for your update and photos about Mason in the General Chat - what a handsome young man you have,

UPDATE - They made it and were interviewd by JJ Chalmers with a clip appearing on BBC2 GNR Highlights.

[Floridatilly]

Originally Posted by soooexcited!

Liv started to tell me she wasn't feeling well in August 2019. We went to Reading Festival and I took one look at when I joined them on the last day and thought you've got Crohns. Shes not great at expressing her emotions and bottles everything up. Her Dad also has it and before I met him had major surgery after a 6 stone weight loss. He was extremely unwell. I took her to see a work colleague when we got back and insisted on a calprotectin poop sample. The result was thro the roof. Instant ref to gastro specialist and multiple attempts at medical management. She reacted really badly to azathioprine and didn't respond to mecaptopurine. She did ok on high dose steroids but couldn't keep popping them. Infliximab was the last option before surgery. After her 2nd infusion she became very unwell. Thankfully her gastro specialist is fantastic and I managed to talk to him within hours to say I felt she'd developed a stricture as was constantly throwing up. Took her to A&E on his advice for an urgent ct scan. To say I was less than impressed is an understatement. She was reviewed by a senior Dr her distended stomach dismissed cannula ripped out and chucked in the bin and told we don't do urgent ct on young women. At this point she was still putting on a brave face and not writhing around in agony so she was deemed well enough to go home. No change overnight but I again spoke to her consultant and took her back and wasn't leaving until she got her ct. Thankfully saw an excellent Dr who listened and she was admitted. Despite the findings on the ct they considered sending her home because this was the peak of covid and thought to be too great a risk to operate. Not a chance in hell they were sending her home. So another call and she had the surgery. Livs an incredible woman who never moaned once, makes me cry reading that back because at the time we just got on with it.
I didnt give you too much information last time we msg as didnt want to scare you when Mason had just been diagnosed. Surgery yes its really scary and awful to see (or not in our case) but it can be life changing. Liv still has to watch what she eats but she's rubbish at looking after herself at times but she's learning. For now the crohns has gone but she knows the reality of the disease is that she's likely to have issues in the future x

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How amazing that you knew and you got Liv diagnosed so quickly. I often suffer from mum guilt because I allowed the doctors to fob me off for what we have worked out to be years before his diagnosis, fobbed off with allergies etc
Its also a good job you fought for the CT scan and surgery, she is so lucky she has you in her corner fighting for her 💪🏻
I had heard of Crohn’s before but I never realised just how much it effects everything and how quickly things change.
💗💗💗💗💗💗

[Floridatilly]

Originally Posted by stanleycamel

You have all responded to this thread giving some real insight in living with Crohns either personally or with your family members and how even at the darkest of time you deal with the situation showing fortitude, determination and when it is suitable humour.

I thought this photo may appeal - taken from the local Evening Chronicle before the start of the Great North Run. The Crohns connection is one of the lovely ladies (left hand side) was raising funds for Crohn's and Colitis UK. I sincerely hope they make it to the end and get a huge cheer passing the finishing line.

Floridatilly - thank you for your update and photos about Mason in the General Chat - what a handsome young man you have,

UPDATE - They made it and were interviewd by JJ Chalmers with a clip appearing on BBC2 GNR Highlights.

See more...

That’s amazing! I have been thinking about doing a run for CICRA 👍🏻 I shamefully wouldn’t need the pig/fat suit at the moment though 🙈🙈😬😬

[soooexcited!]

Originally Posted by Floridatilly

How amazing that you knew and you got Liv diagnosed so quickly. I often suffer from mum guilt because I allowed the doctors to fob me off for what we have worked out to be years before his diagnosis, fobbed off with allergies etc
Its also a good job you fought for the CT scan and surgery, she is so lucky she has you in her corner fighting for her 💪🏻
I had heard of Crohn’s before but I never realised just how much it effects everything and how quickly things change.
💗💗💗💗💗💗

See more...

Don't ever feel guilty your doing an amazing job. You know Mason best always follow your Mum judgement because Mums & Dads know their children and know when they are ill. Xxx

[stanleycamel]

Not Crohns related but I have noticed that there is a programme called "How to stop your IBS" on Channel 5 7pm on Thursday which may be of interest.