Reply With QuoteSorry to read that Tony, that's harsh. All I can say is that I hope the new treatment works and good luck. Chin up.
Well, unfortunately it’s not good news. I was admitted on Saturday, spent the day being triaged and finally started some treatment on Sunday. That consisted of 4 heavy duty steroid injections per day plus some oral drugs. Normally there’s a clear improvement within 2/3 days but I seem to be one of the rare cases that steroids don’t help. To make matters worse the steroids have played havoc with my diabetes (not unusual) so on top of everything else I’ve suddenly had to have insulin injections on a daily basis too (never needed this before as I’m type 2).
Anyway, today I start a new treatment of biologics via infusion. It’s a newer and seemingly successful approach but it does have its own risks and potential side effects which are a little bit worrying. Regardless of that I’m hoping to god it works, because once steroids and biologics have been exhausted there’s only one other solution. It’s one I don’t even want to think about right now.
Sorry to read that Tony, that's harsh. All I can say is that I hope the new treatment works and good luck. Chin up.
F.T.F.A.
Fingers crossed for you Tony, the fact the treatment's playing havoc with your diabetes must be a particularly unwelcome burden. Keep positive though mate and I hope for the best possible outcome for you.
Hello Tony, Never underestimate the power of the human body to 'heal' and 'be healed' . You've taken all reasonable steps to obtain the best treatment and it's still 'early days' when your docs / nursing staff are doing their best and 'going by the book' . The biologics are the next logical step and can be very effective in remedying colitis . Wishing you wellness Tony and with positive thoughts for a full recovery asap. BW, dunk
"Well they would say that ... wouldn't they!"
Best wishes for a speedy recovery.
I hope the new treatment works wonders and you are back home soon.
Best wishes for a speedy recovery Tony.
When you look long into an abyss, the abyss looks long into you.........
Fingers crossed for you Tony, thinking of you
Wishing you well, Tony.
Fingers crossed for you Tony, and hope you can get out on the Harley soon.
Best wishes for a speedy recovery. Take care.
Sending you best wishes and strength Tony. You're tough as boots- you've got this.
Get well soon
All the best and hoping things come good for you LTF.
Best wishes Tony!
Hopefully the new treatment will work for you - fingers crossed. 🤞🏻
Really sorry to hear that, and best wishes for tackling those and recovering to the best extent possible. Would echo the point above that given the right support the body's ability to heal is phenomenal.
Diet is often the root of much of what ails us. This site is a good repository of research papers to search through, as each has a short synopsis to quickly grasp if it might be relevant.
http://haidut.me/?p=989
http://haidut.me/?s=ulcerative
Missed this first time, sorry to hear Tony.
Fingers crossed the next treatment type works for you. Hard, but try to stay positive through it all.
Fingers crossed this next batch of treatment works better for you ! Stay positive - sounds like they addressing it from every angle.
cheers
matt
All the best for a speedy, and full, recovery.
Wishing you all the best Pal and stay positive.
Life is certainly a very bumpy road.
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Better the devil you know and all that Tony. Hopefully you're back to good health in short order. Any nice nurses...? ;-)
Last edited by gunner; 26th February 2023 at 00:27.
Tony, any news? Hope you are getting better.
Thank you for asking. I’m certainly happier being out of hospital… bloody awful experience that was.Originally Posted by jonasy
It’s a slow process for sure, but I had my second biologics (Infliximab) infusion on Wednesday. I felt pretty rough for a day or two but less so today, and my symptoms are definitely calming down, at least for now.
I’ve also had a really bad problem with water retention in my legs and feet from the knee down. It’s been caused by an inability to absorb proteins whilst my colon is in “recovery phase” but thank goodness it’s starting to improve (which I hope is a good sign that the biologics are starting to make an impact).
Oh, I’ve lost 20lbs over the last 2 months… really upsetting as most of it seems to be muscle mass. I’m hoping to god that I manage to build myself up again before too long as I look like a shadow of my former self.
Anyway, a long way to go to remission, but so far the signs seem to be reasonably positive.
When I first went on the biologicals it really took it out of me. I’d have the injection on a Friday and not have the energy to get out of bed/off the sofa for most of the weekend but it soon passed. I can’t remember exactly but think it was by the time I got the 4th injection that I got used to it and by the 8th I was relatively back to normal. My brother in law has UC and had a similar turn around. Hopefully you see similar results Tony.
It certainly should do, but don’t worry too much as it can be trial and error - I think Infiximab was just one of 4 different drugs they tried on me. As regards coping, remember these drugs used to be referred to as a ‘chemical cosh’ beating your body/disease in to line so the initial whacks can feel heavy but you will adjust.
Just caught up on this Tony.
Sounds like a mare. Hope you get better soon.
Very pleased that you are on the right track. All the best for a steady recovering to your old self.
It's just a matter of time...
Oi ! have you been reading my diary !
My story is virtually identical, and I've also ended up on Stelara (it's 2200e a pop so make sure you don't drop the syringe).
LTF - I've had many of the drugs they are using on you at the moment. The steroids were mental and I was lucky to get 1 hours sleep a day whilst on them. Mine and maseman's experiences are very similar. A drug works fine, then all of a sudden it stops working. They'll try another one, and then that stops working as well. Don't fret, when a drug fails they have many options available to them and it'll simply be a case of finding which one works best for you.
You'll be on all sorts of drugs at first - I had to set up a spreadsheet for mine. They will decrease over a period of time, and hopefully you'll end up only having a self administered injection or infusion at the hospital every 2 or 3 months.
Last edited by catflem; 11th March 2023 at 13:13.
Gents, all the best to all of you.
Someone who lies about the little things will lie about the big things too.
Sounds shot Tony, but you seem to be (hopefully) through the worst.
Tony. So sorry to hear your news. Just saw your post. My wife managed to get completely better from Ulcerative Colitis some years ago - it surprised her doctors who were all ready to get the scalpel out and fit a colostomy bag. She had scarring in the bowel. It helps that she is a trained (qualified) nutritional. therapist too. Feet free to have a chat if you like. All the best. Martyn
“ Ford... you're turning into a penguin. Stop it.” HHGTTG
Tony, glad to hear you are out of the hospital.
Hope it now starts to turn around !
All the best
Matt
Well, it’s some time since I updated this thread and it’s probably fair to say that my life over the last 12 months has been a complete and utter nightmare. In fact, I’ve been in a constant state of flare throughout that time, save for a two week window when it appeared for a while that a particular drug treatment might be working.
I’m currently on my third biologic and am five weeks in, self injecting now every two weeks; apparently it can take 12 to 16 weeks before it starts to make a positive impact (if indeed it’s going to) so I need to give it a little bit more time. However, if I’m being completely honest I think I’ve reached the stage where this illness has beaten me, and I’ve therefore asked my consultant if we can have a conversation regarding surgery.
I weighed 11.5 stone when I was diagnosed 12 months ago, and I’m now nine stone. I sleep roughly 3 hours per night but that sleep is completely broken, so I have no real means of restoring my energy levels during the day. Compounding the energy (or lack of it) issue, eating anything is incredibly difficult because I have a continuous metallic taste in my mouth which makes everything I eat taste unpleasant. It doesn’t matter what it is.
I now understand the anecdotal stories regarding surgery that I’ve heard repeatedly - that is, by the time you feel ready to face the knife as a solution it’s literally the only thing that you want. The only thing that feels like you might get your life back.
I’ll update again once I’ve had the necessary conversations with my consultant. In the meantime, I’m pretty proud to say that, at work, I’ve successfully delivered the largest project I’ve ever managed, which literally kicked off when I was diagnosed and went live a couple of weeks ago. It exceeded all expectations in terms of target metrics, and whilst it was a real challenge (particularly physically, due to my circumstances) it ended up going without a hitch. I’ve barely managed to get out on the bike of late, though, because if I don’t feel that I’m strong enough, I won’t contemplate putting myself or anyone else at risk. The truth is that I barely leave the house, due to the nature and severity of my symptoms and the associated risk of accidents. Photography business on hold, my season ticket at Spurs being sold on Ticket Exchange match by match... pretty rubbish situation, tbh, given that biking, photography and football was my life in terms of my real passions, at least.
That's really rough Tony.
Can understand your thoughts regarding the surgery and I think I'd be tempted to go that route.
Another one of life's curveballs.
Good luck with treatment.
Ah I'm really sorry to read this Tony. My sister has UC and while she has flare ups it's largely controlled by medication.
Fingers crossed you get the treatment you need to make this much easier to live with.
Sorry to hear this Tony.I hope for all the best for you.
So sorry to hear this Tone.
Hope you get the surgery you want as soon as possible.
God bless mate.
Cheers,
Neil.
Very sorry to hear this. I hope you find a solution soon.
Sorry to hear that the symptoms have not improved over the past twelve months.
Although it may feel right now surgery is the best option, do take your time to make that decision. I’m sure you will.
Would you think about alternative medicine at all? I know somebody else with this condition, not as severe as what you describe I don’t think, but I know he found some comfort with other remedies. Happy to ask him what he tried if it would help.
Gosh, that sounds like a really challenging year for you, Tony. I do hope that the latest round of treatment brings a significant improvement. On the positive side, well done on delivering your project - that must be a real testament to your expertise and tenacity, despite all you have been going through.
Sorry to hear that Tony. Is your latest injection some form of Adalimumab? I had a similar path with Crohn’s where nothing seemed to be working but being put on humira has been life changing. It was tough going initially where I was suffering from constant fatigue but I started to see changes after about 8 weeks on it, was probably another 4 weeks after that where I started to feel like I was normal again for the first time in what must have been 12 years of suffering.
It was going in so long that I forgot what normal was but I must be on it 8 years or so at this point and rarely have any flare ups these days. Don’t lose hope yet :).
Last edited by Enda; 10th February 2024 at 18:20.
Thanks, guys.
Thasnk you, and no premature decisions will be made. I don't think I have it in me now to go looking for an alternative medicine solution.
Thanks - it was probably what kept me sane.
Yes, that's the one I'm on now. The fear, though, is that it works in a similar way to infliximab; that worked pretty quickly but, within a couple of weeks, I'd produced antibodies against it. I'm keeping my fingers crossed, though.
Very sorry to hear this and I genuinely hope things change for the better for you
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Sounds hellish Tony and so sorry to read your symptoms are not improving.
Wishing you all the very best, and if you can adjust to what may be your new reality that is more than half the battle.
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,
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
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