Ulcerative colitis

[learningtofly]

Hang in there. I think there were at least 3 different "mabs" before they tried me on Stelara (Ustekinumab) - which has worked well for me for the past 2 years. I'm enjoying the respite, but I am under no illusions that Stelara will be the answer for the rest of my life.

Fingers crossed that they find the right "mab" for you, and that you do not have to elect for surgery,

Yes, tried that one - we gave it 14 weeks but I was just getting progressively worse. Given that inflixumab worked (save for the antibodies I produced) ustekinumab was always going to be a long shot. I’m glad it’s working for you, though, and long may that continue.

[learningtofly]

Tony - we’ve not seen eye to eye lately but that’s about football which, at the end of the day is just a sport. I didn’t know you were going through this and I’m genuinely sorry to hear it. My sister went through a few years of UC and all the pain and drugs that come with that and at one point we didn’t think she was going to get out of hospital as her organs were shutting down.

She went for a stoma in the end as it was all getting to be too much for her. The initial period of adjustment wasn’t easy but ultimately she has a much better life because of that surgery.

What I saw her go through pre-surgery I wouldn’t wish anyone to go through so believe me when I say I know what you’re going through. I’ve said lots of times that, should it happen to me, I’d get the surgery. I understand that the thought of it is scary but honestly for your quality of life it’s something seriously worth considering.

Take care.

David

Appreciate that, David, thank you. Sorry to hear about your sister too, but hopefully her quality of life will only get better now.

[andy tims]

Sorry to hear this T.

[Mj2k]

Sorry to hear about the tough year mate, really feel for you.

I worked with a lady about 7 years ago who had UC and had a stoma fitted in her early 20s, she spent a lot of time promoting herself with one and sharing her journey.

https://www.dailymail.co.uk/news/art...a-bag-off.html

Apologies for the DM link, but she talked openly about how much the surgery changed her life for the best & so glad she had made the decision to get it done.

As you say, it’s not a small decision, but there are positives once you’re used to the changes etc.

Stay positive & hope you can get feeling strong again soon and out on that bike.

[vagabond]

Sorry to hear about your troubles - hope that whatever decision you make, is the right one for you. Take care.

All the best.

[Chris_in_the_UK]

Sorry for the late response Tony - been travelling back home from holiday.

Jeez - wishing you the best and hopefully a path to some normality lies ahead.

Take care.

[Thewatchbloke]

I've just read your update Tony, it sounds like you've been well and truly through the mill, and there's no end in sight right now. I hope whatever path you choose, and it sounds like surgery will be the one, marks the beginning of the road to recovery. I realise a stoma is a huge step and not an easy decision to make but we're all rooting for you here at watchbloke towers.

[learningtofly]

Sorry to hear this T.

Sorry to hear about the tough year mate, really feel for you.

I worked with a lady about 7 years ago who had UC and had a stoma fitted in her early 20s, she spent a lot of time promoting herself with one and sharing her journey.

https://www.dailymail.co.uk/news/art...a-bag-off.html

Apologies for the DM link, but she talked openly about how much the surgery changed her life for the best & so glad she had made the decision to get it done.

As you say, it’s not a small decision, but there are positives once you’re used to the changes etc.

Stay positive & hope you can get feeling strong again soon and out on that bike.

Sorry to hear about your troubles - hope that whatever decision you make, is the right one for you. Take care.

All the best.

Sorry for the late response Tony - been travelling back home from holiday.

Jeez - wishing you the best and hopefully a path to some normality lies ahead.

Take care.

I've just read your update Tony, it sounds like you've been well and truly through the mill, and there's no end in sight right now. I hope whatever path you choose, and it sounds like surgery will be the one, marks the beginning of the road to recovery. I realise a stoma is a huge step and not an easy decision to make but we're all rooting for you here at watchbloke towers.

Thanks all. Read your ex-colleague's experiences with a sense of admiration for her, Matt, I have to say.

[hilly10]

Wishing you all the best Tony, I hope you can keep the fight in you.


Paul

[Kingstepper]

There was a piece about this (surgery) on Morning Live this am if interested.

Best wishes with whatever you decide to do.

[Halitosis]

Sounds horrible LTF, and wishing you resolution.
An acquaintance with a not dissimilar condition ended up electing for a stoma and has since enjoyed a massively improved life.
All the very best in whatever you decide.

[Mj2k]

Thanks all. Read your ex-colleague's experiences with a sense of admiration for her, Matt, I have to say.

She remains an inspiration for me, but have never mentioned it to her.

Given her stoma awareness promotion, if you want me to introduce you to her, I’d be more than happy.

When I realised yours was the same as hers it hit me hard; hadn’t connected them both as it’s not overly common.

All the best mate.

[bparker170]

Wishing you all the best Tony, having had some unexpected heart and long COVID issues myself since 2022 it really is the case that health is indeed wealth. Get well very soon.


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[I a n]

Hey Tony ... sending best wishes for your recovery and to hope for us to get out on the bikes at some time - fingers crossed for you.

[Bonny Marco]

Hi Tony, sorry to hear about your health issues. Sending you best wishes and I hope things pick up for you.

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[TaketheCannoli]

Just gotten round to reading that and it's exactly the same story as my sisters and at the same age too, even down to the critically low potassium levels!

It's such a shame The Mail had to refer to her as 'the knockout' though.

Tony - I remember the situation Nicola being in regards making the decision to have a stoma. That conversation with her consultant about whether it'll get sufficiently better to avoid the stoma took months and months, meanwhile she wasn't getting any better. It seemed to be in a perpetual loop. My advice, for what it's worth, is get the stoma. I always said I would. She's gone on to have a successful career, two kids and lives a great life. She's a real force of nature, truly inspirational. Even living in Liverpool hasn't dampened her spirits ;)

S

https://www.dailymail.co.uk/news/art...a-bag-off.html

[sundial]

Tony, Did you read my PM ref Guys/ St Thomas' London Hospital latest ( experimental) UC treatments – has helped some UC patients. Same treatment is used for patients having "C.diff" infections; the experimental treatment for C.diff has 94% success rate; C.diff symptoms very similar to UC symptoms.

BW, dunk

[learningtofly]

Wishing you all the best Tony, I hope you can keep the fight in you.


Paul

Ditto, Paul, thanks.

There was a piece about this (surgery) on Morning Live this am if interested.

Best wishes with whatever you decide to do.

Thank you., and I'll have a gander.

Sounds horrible LTF, and wishing you resolution.
An acquaintance with a not dissimilar condition ended up electing for a stoma and has since enjoyed a massively improved life.
All the very best in whatever you decide.

Cheers. Big Decision, but...

She remains an inspiration for me, but have never mentioned it to her.

Given her stoma awareness promotion, if you want me to introduce you to her, I’d be more than happy.

When I realised yours was the same as hers it hit me hard; hadn’t connected them both as it’s not overly common.

All the best mate.

I'll give that some thought, Matt, thank you.

Wishing you all the best Tony, having had some unexpected heart and long COVID issues myself since 2022 it really is the case that health is indeed wealth. Get well very soon.


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Cheers Bob.

Hey Tony ... sending best wishes for your recovery and to hope for us to get out on the bikes at some time - fingers crossed for you.

Thanks Ian. Really missing the biking.

Hi Tony, sorry to hear about your health issues. Sending you best wishes and I hope things pick up for you.

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Thank you.

Tony, Did you read my PM ref Guys/ St Thomas' London Hospital latest ( experimental) UC treatments – has helped some UC patients. Same treatment is used for patients having "C.diff" infections; the experimental treatment for C.diff has 94% success rate; C.diff symptoms very similar to UC symptoms.

BW, dunk

Yes, read but not had a chance to reply yet to various PMs. I'll try to discuss with my IBD team... interesting if a bit alternative.

[Jon Kenney]

You will know in yourself when the time comes to make life changing decisions. From what I've learned about you in the time I've been on this forum is that you are level headed and pragmatic, so you will know when.

All the best to you, Tony. I wish you well. Stay strong.

[pacifichrono]

Unfortunately I've had a pretty awful month with my tummy (read bowel), to the extent that I was so sure I had colon cancer that I was starting to draw up contingency plans for the worst kind of diagnosis. Anyway, I had a colonoscopy yesterday and it turns out that it's actually ulcerative colitis (something my father suffered from) and should be successfully treatable. I do have rather a lot of pills, some of which are a one-off treatment and others that I'll need to take for the rest of my life. I also have to go back for an outpatients appointment to talk about aftercare and disease management, but in the interim I wondered if any other TZers were living with this and, if so, how you are coping.

As an aside, just some words of encouragement for anyone facing a colonoscopy for the first time. The lead-up is a tad unpleasant (a change of diet for a couple of days, followed by a day's fasting whilst taking some industrial strength laxatives - and they really are industrial strength); however, the test itself was nowhere near as challenging as I was fearing. I fact, having been given some sedation I wasn't even aware of when my consultant swapped his finger for a probe (!) and he had to wake me up to tell me that he'd reached the end of my colon and was now on the way back. Even then - when I was properly awake - it was no more than very mildly uncomfortable.

My advice to anyone who has symptoms that are worrying them (changes to traditional movement habits, loose stools, blood in stools, etc) is to get on the NHS Bowel Screening Programme straight away. You'll receive a simple kit to submit a sample, and if they see anything they're worried about you'll be straight in for screening; thereafter, because you'll be on the screening programme any treatment required is fast-tracked, and is actually far quicker than going privately (should you even have that as an option).

Hey Tony, so sorry to hear about your condition. I've had 4-5 colonoscopies and they were a breeze! By far the worst part is the preliminary cleaning process. Best of luck for a full recovery.

[deepreddave]

No useful words of experience or wisdom to add to the above so just good wishes that medical science resolves it for you or surgery goes well and you can live your life with minimal inconvenience.

[sundial]

Unfortunately I've had a pretty awful month with my tummy (read bowel), to the extent that I was so sure I had colon cancer that I was starting to draw up contingency plans for the worst kind of diagnosis. Anyway, I had a colonoscopy yesterday and it turns out that it's actually ulcerative colitis (something my father suffered from) and should be successfully treatable. I do have rather a lot of pills, some of which are a one-off treatment and others that I'll need to take for the rest of my life. I also have to go back for an outpatients appointment to talk about aftercare and disease management, but in the interim I wondered if any other TZers were living with this and, if so, how you are coping.

As an aside, just some words of encouragement for anyone facing a colonoscopy for the first time. The lead-up is a tad unpleasant (a change of diet for a couple of days, followed by a day's fasting whilst taking some industrial strength laxatives - and they really are industrial strength); however, the test itself was nowhere near as challenging as I was fearing. I fact, having been given some sedation I wasn't even aware of when my consultant swapped his finger for a probe (!) and he had to wake me up to tell me that he'd reached the end of my colon and was now on the way back. Even then - when I was properly awake - it was no more than very mildly uncomfortable.

My advice to anyone who has symptoms that are worrying them (changes to traditional movement habits, loose stools, blood in stools, etc) is to get on the NHS Bowel Screening Programme straight away. You'll receive a simple kit to submit a sample, and if they see anything they're worried about you'll be straight in for screening; thereafter, because you'll be on the screening programme any treatment required is fast-tracked, and is actually far quicker than going privately (should you even have that as an option).

Tony is correct but too many people ignore their symptoms – partly because there's still far too much stigma associated with bowel problems – stigma ingrained on so many from an early age & partly due to others' attitudes / beliefs / ignorance that the bowel is the body's dustbin & full of unmentionable smelly waste. However, fact is, the large bowel is now regarded by those 'in the know' as our "second brain*" – because the microbiota therein, actually control our immune system and are essential for our wellbeing. Look after and value your large bowel – it's the key to fending off illness by virtue of promoting, via a healthy diet, a diverse microbiome which in turn promotes an efficient immune system. My own gut problems commenced many years ago due to over-prescribed (over many months) antibiotics with resultant years of discomfort – about which GPs did not fully realise the cause. Years ago, the microbiome was not on medical schools' agendas and nowadays, 'old school' GPs and dental surgeons still over-prescribe antibiotics far too readily, and without sufficient attention to the consequences. We all tolerate / do not tolerate, antibiotics differently – no hard and fast rules – some more susceptible to their potential consequences than others - and unfortunately many GPs / dental surgeons are still ignorant of their potential negative effects on our wellbeing. I've another colonoscopy due in a few months time – a follow-up to the last one two years ago when polyps (including another sessile and potentially pre-cancerous polyp) were painlessly 'lassoed' & removed. As per Tony's advice, if you experience any significant changes ref bowel habit / passing stools, please do not try and ignore the symptoms. Bowel examinations likely conjure up fear and trepidation but if they're necessary you'll be able to cope and be thankful for any diagnoses. BW, dunk

EDIT: *Consider Googling "Gut and Second Brain" for articles; much of the science ref same has only been discovered in recent years and research continues.

[wildheart]

All the best Tony, I hope you get sorted ASAP

[learningtofly]

Thanks for the kind words, everybody. I’ve just had a consultation with my IBD doctor, and I’m presenting myself for admission tomorrow. Initially this will just be for observation and stabilisation, but it does now seem that surgery is the likely outcome (it just being a question of timing).

I’m obviously going to need something to occupy my mind while I’m lying in the hospital bed so it’s likely that I’ill be logging on in the normal way. However, I’ll update this thread as and when.

[awright101]

Best wishes Tony

[ryanb741]

Best of luck Tony.

[hilly10]

Wishing you all the best.

[Chris_in_the_UK]

Best wishes for this Tony, hope things get resolved.

[TaketheCannoli]

Best wishes Tony.

[sundial]

Wishing you speedy stabilisation Tony and hope you'll be feeling very much more comfortable asap.

Regards, dunk

[degsey]

Best of luck and hope it all goes well.


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[Suds]

So sorry to hear this LTF, I had hoped surgery wouldn’t be required and fingers crossed it won’t be necessary. IBD I have many years of managing but not UC, 30 years of Crohns in my case (best part of 15 years sufferring before diagnosis). Feel free to PM me if you want me to share my triggers and methods to reduce symptoms.

[DANH]

All the best Tony
Dan

[learningtofly]

Well, just a quick update…

I spent most of the day being triaged through A&E and I’m now in a side room waiting to see where in the hospital I end up for tonight. I’ve had quite a long conversation with the A&E Gastro specialist as well as a load of blood tests, and I think it’s fair to say I may not have survived much longer had I not been admitted. It seems that my body has effectively been shutting down in order that it can focus solely on fighting my bowel inflammation, which has been quite extreme. This has resulted in some very serious implications with regard to basic nutritional needs as well as a lot of other things. In fact, it appears that UC doesn’t get a great deal worse than I’ve had it over the past few months.

I’m hoping to get some food soon because I’m bloody starving, settle in my location for the night and then have a colonoscopy in the morning. Thereafter, they’ll decide what they’re going to do with me in the short term; it is looking like the only option going forward is surgery, though, so I think I just need to get my head around that.


Sharing does seem to make me feel a bit better, so thanks for allowing me that and for the support.

[Chris_in_the_UK]

Well, just a quick update…

I spent most of the day being triaged through A&E and I’m now in a side room waiting to see where in the hospital I end up for tonight. I’ve had quite a long conversation with the A&E Gastro specialist as well as a load of blood tests, and I think it’s fair to say I may not have survived much longer had I not been admitted. It seems that my body has effectively been shutting down in order that it can focus solely on fighting my bowel inflammation, which has been quite extreme. This has resulted in some very serious implications with regard to basic nutritional needs as well as a lot of other things. In fact, it appears that UC doesn’t get a great deal worse than I’ve had it over the past few months.

I’m hoping to get some food soon because I’m bloody starving, settle in my location for the night and then have a colonoscopy in the morning. Thereafter, they’ll decide what they’re going to do with me in the short term; it is looking like the only option going forward is surgery, though, so I think I just need to get my head around that.

Sharing does seem to make me feel a bit better, so thanks for allowing me that and for the support.

Stay strong Tony - you are in the right place with the right people.

All the best.

[Mj2k]

Sounds like you’re in the best place Tony, despite it being rather a dull evening ahead for you.

Hoping you get some grub & it’s good.

You will work the right decision out for yourself, of that I have no doubt. With what you’re dealing with at the moment, the surgery option does sound damn good tbh.

IWC branded stoma perhaps.

Stay strong & wish you the best for tmrw, and the discussions.

[ryanb741]

Well, just a quick update…

I spent most of the day being triaged through A&E and I’m now in a side room waiting to see where in the hospital I end up for tonight. I’ve had quite a long conversation with the A&E Gastro specialist as well as a load of blood tests, and I think it’s fair to say I may not have survived much longer had I not been admitted. It seems that my body has effectively been shutting down in order that it can focus solely on fighting my bowel inflammation, which has been quite extreme. This has resulted in some very serious implications with regard to basic nutritional needs as well as a lot of other things. In fact, it appears that UC doesn’t get a great deal worse than I’ve had it over the past few months.

I’m hoping to get some food soon because I’m bloody starving, settle in my location for the night and then have a colonoscopy in the morning. Thereafter, they’ll decide what they’re going to do with me in the short term; it is looking like the only option going forward is surgery, though, so I think I just need to get my head around that.


Sharing does seem to make me feel a bit better, so thanks for allowing me that and for the support.

Stay strong Tony, light is at the end of the tunnel.

[JonRA]

Wishing you well Tony - what you have been through sounds dire so, however this goes, hopefully it will be a turning point and the start of better times. ATB Jon

[hilly10]

Rooting for you Tony, up and at them.

Stay strong, It must be so daunting but they know what to do, have faith

[Halitosis]

Stay strong Tony, light is at the end of the tunnel.

Quite literally when it comes to the colonoscopy.

[williemays]

My colleague had surgery for colon cancer several years ago, and she has been working full time and enjoying her life ever since. I really admire her courage and resilience, and yours too, especially for sharing your experiences with us here on the forum. Your posts will help others in similar situations, or who are just trying to cope with the difficulties of life in general. Thank you. —Mike

[Snoodles]

Sorry to hear about your awful condition Tony, at least you’re in the right place, stay strong.

Moving forward hopefully the operation will improve life for you to not end up in this situation again.

Best wishes.

[pacifichrono]

Tony, so very sorry to learn what an awful time you've had with this nasty condition. I will pray for you and that your doctors get a good handle on this matter quickly.

[learningtofly]

Well, a substantive update this time. I’ve just had a long session with my consultant, and she now feels – as I do – that I no longer have the luxury of time to pursue non-surgical solutions. She’s therefore referred me to the surgeons, with a view to being booked into theatre pretty immediately.

More as and when, but positive thoughts would be very much appreciated.

Edit: just seen my surgeon - scheduled for 8.30am tomorrow. It’ll be an ileostomy - hardly the outcome I’d have chosen a year ago, but there you go.

[sundial]

Prayers and positive thoughts for a very successful outcome Tony.

Best wishes, dunk

[hilly10]

Positive thoughts here Tony, I am sure they will sort you out

[awright101]

Hi Tony, good luck with the procedure. We are thinking of you in the Wright household. Your in the best of places to get you through this.

[dandanthewatchman]

Well, a substantive update this time. I’ve just had a long session with my consultant, and she now feels – as I do – that I no longer have the luxury of time to pursue non-surgical solutions. She’s therefore referred me to the surgeons, with a view to being booked into theatre pretty immediately.

More as and when, but positive thoughts would be very much appreciated.

Been sorry to read about your health issue and wishing you all the very best

You’ve made a massive decision today and am sure it was difficult but will turn out to be the right one. Therefore it is upwards only from here albeit I am sure there will be challenges

I know you have a busy and fulfilling life and think forward to watch acquisitions and rides on your bike with a few holidays thrown in ….when I had a bout of ill health 9 years ago my wife had me focus on a cruise that we had booked and was 3 months hence. It helped a lot to have thoughts of nice things to come.


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[Chris_in_the_UK]

Big decision Tony - wishing you the best and a speedy recovery.

[vagabond]

Wishing you all the best Tony, for a successful outcome and a speedy recovery.