Soldato
No way! That's mad. I was under the impression this one would last 6 weeks.
Crohns / ulcerative colitis sufferers
- Thread starter ColdAsIce
- Start date
No way! That's mad. I was under the impression this one would last 6 weeks.
They are putting the price up to £12.50 per month in Jan (its called the travel pack). BUT you get
cancellation/abandonment cover upto £5000 Per person
Personal accident upto £50K
Oh and RAC cover, unlimited call outs, no vehicle age limit accident recovery etc.
And all that is family cover (as long as they travel with you)
A workaround is to have a joint account with them with the mrs and then your both covered for travelling separately
Edit:
I've just re-read my other post. regarding additional cost. I meant over the std travel pack charge.
But its still way cheaper than standalone and also gives RAC cover too.
cancellation/abandonment cover upto £5000 Per person
Personal accident upto £50K
Oh and RAC cover, unlimited call outs, no vehicle age limit accident recovery etc.
And all that is family cover (as long as they travel with you)
A workaround is to have a joint account with them with the mrs and then your both covered for travelling separately
Edit:
I've just re-read my other post. regarding additional cost. I meant over the std travel pack charge.
But its still way cheaper than standalone and also gives RAC cover too.
Last edited:
Soldato
It's purely down to the cost of healthcare in North America should something go wrong, as opposed to the risk of something itself going wrong. With the same parameters, but put somewhere really remote in say Asia, and the quote would be under £100.
Soldato
Maybe it's something new/different for you then hopefully.
Well yeah obviously healthcare costs more in the US however people are seemingly getting quotes for significantly less so it isn't purely down to that, it is perhaps partly a reflection of the provider simply not wanting to take on that risk.
Have gone from pretty much normal one day to constantly on the toilet with loose stools and mucous the next and a constant need to go.....
Go to love the unpredictability of this stupid disease.
Back in touch with the hospital see what they say.
Go to love the unpredictability of this stupid disease.
Back in touch with the hospital see what they say.
Okay, so had my annual appointment in December and they didn't seem to give a toss about me coming off the medication, in fact they were quite interested in the changes I'd made and the results I'd enjoyed because of it. Go figure.
They did, however, suggest another colonscopy since it had been over four years since my last, and I've had the disease for some 18 years now. The doctor advised this would be "early 2019", well, as it transpired, it was the 9th Jan.
Went through without a hitch, did a 27 hour water fast, mixed with the disgusting MoviPrep laxative treatment (which I found easier this time in all fairness, still not pleasant), and during the examination the doctor noted I now have "mild" colitis (was always diagnosed with moderate colitis in the past, and in late 2014), I also have proctitis, and that I should definitely get back on the medication and I'll probably be prescribed immunosuppressants, too. No reason given at this point.
I've got a follow up meeting with my doc in early March to discuss their findings. I can't say I'm too chuffed in all fairness, why, after all these years and my symptoms vastly improving due to diet change, and coming off medication, do they want to prescribe me immunosuppressants now? I'm just so baffled with it all. I've gone from moderate to mild colitis, and I feel well most of the time.
Is this just modern medicine wishing to medicate at all costs?
Soldato
I have the same ongoing debate with my consultant. I've been off medication for around 8 years now and every time I have an appointment, it shows as mild colitis and they try to put me on a biologic drug like infliximab. I know it's difficult to compare how I would be on medication but from being diagnosed at 17 to coming off meds at 21, I was almost constantly in a flare. Since coming off meds, I average probably 1 flare a year and even then, it's nowhere near as bad as I used to have it and I rarely need time off work.
I understand that they are worried about the long term impact of inflammation in my bowel leading to cancer but whenever I have been on medication, the side effects have always been so bad that I'd rather be in a flare. I don't respond to mesalazine / asacol and steroids aren't a long term solution either. I tried azathioprine and ended up getting more colds and viruses in that year than ever before and I felt seriously low. I'd rather continue on no medication and live with the potential issues down the line than having a daily battle with medication.
The only thing I do make sure is that I have colonoscopies every year or two to keep an eye on things.
Soldato
I've decided to see a nutritionist friend who has an autoimmune disease too, who manage to improve her condition through diet.
I am embarking on a Paleo diet, some digestive supplements, with a view to eventually going on an Auto Immune Protocol (AIP) diet/lifestyle. Two weeks in andi t's hard work; it's beyond just being gluten, dairy and processed food free!
I am embarking on a Paleo diet, some digestive supplements, with a view to eventually going on an Auto Immune Protocol (AIP) diet/lifestyle. Two weeks in andi t's hard work; it's beyond just being gluten, dairy and processed food free!
I appreciate your response Dan, you sound very similar to me. I was on mesalazine for years and years but it never pulled me out of a flare. The only thing that has is coming off gluten.
I'll check in once again when I've spoken to my consultant next month and let you know what's going on, but yeah, can't say I'm too keen to get myself medicated up again.
Obviously I'm no doctor but the way I see it, I'm off meds, my symtpoms have gone (or are very minor), surely this is better than being on medication, feeling rough all the time and having symptoms?
Interested in this, how does it compare to a gluten free only diet? I try to avoid dairy anyway, but the processed food element would be tricky.
Soldato
I'm always wary of discussing diet and UC/crohn's, but my UC seems to be in good remission at the moment and I've been eating a good amount of proper probiotic yoghurt recently. Fage and yeovalley that has Lactobacillus Bulgaricus. For anyone wondering if they could try anything else to help, might be worth a go.
Diet and supplementation changed my life, got me off steroids for the first time in four years. I still need to remain on medication though. I’m on Vedolizumab as well as Mesalazine and Azathioprine. It’s proven the best treatment, but until I radically changed my approach to nutrition, I remained very ill.
@wingman Proctitis needs fixing, it can get bad fast and can be really, really unpleasant. I mistook it once for a terrible flair. I’ve always found Mesalazine enemas the most effective, though administration isn’t pleasant.
The NHS don’t want to medicate you, our drugs cost a fortune, immunomodulation in particular.
Unfortunately our disease is so individual, unpredictable and not well understood, that all they can do is follow a protocol of ‘see disease > give medication > still see disease > give stronger medication’. We’re told diet isn’t a big part, and I believed them for years. Now I just think they don’t yet have enough information to tell patients anything else.
I saw a nutritionist who told me that aside from avoiding triggers and trying VSL#3, diet had nothing to do with it. All I can say is that for myself, what goes in my body has the single greatest impact on the severity of my diseases.
Unfortunately IBD still has so many question marks over it, we’re very lucky we have drugs that sometimes help us avoid the dangerous procedure of having it all removed, but there are so many variables, managing is a constant balancing act.
Anyways, good luck all.
@wingman Proctitis needs fixing, it can get bad fast and can be really, really unpleasant. I mistook it once for a terrible flair. I’ve always found Mesalazine enemas the most effective, though administration isn’t pleasant.
The NHS don’t want to medicate you, our drugs cost a fortune, immunomodulation in particular.
Unfortunately our disease is so individual, unpredictable and not well understood, that all they can do is follow a protocol of ‘see disease > give medication > still see disease > give stronger medication’. We’re told diet isn’t a big part, and I believed them for years. Now I just think they don’t yet have enough information to tell patients anything else.
I saw a nutritionist who told me that aside from avoiding triggers and trying VSL#3, diet had nothing to do with it. All I can say is that for myself, what goes in my body has the single greatest impact on the severity of my diseases.
Unfortunately IBD still has so many question marks over it, we’re very lucky we have drugs that sometimes help us avoid the dangerous procedure of having it all removed, but there are so many variables, managing is a constant balancing act.
Anyways, good luck all.
I should've noted that I had proctitis when I was younger too, so this is nothing new. And just to be clear, I've had UC since when I was 11 years old.
I hear what you're saying about the cost of drugs. I suppose I should've been more clear, I was saying that doctors seem more keen on throwing drugs at people than perhaps looking for a root cause (I appreciate a root cause isn't always helpful). I was always told diet would have no impact for me, and it simply wasn't true.
Re: proctitis, I'd be keen to know/read more about this, anywhere you could recommend? I'd like an informed decision before going to my consultation in March. I didn't know it's something you could "fix", as such, similar to UC in that regard.
Appreciate your comments! I'm glad you've found relief with lifestyle change (as have I).
Best to see a dietitian if you're considering changing your diet etc.. especially if you can get referred to a dietitian who works alongside or within gastro teams as they'll be quite familiar with IBD etc.. might be worth asking your consultant next time you're in or indeed just paying for a session or two privately.
The problem with various diets online are that they're not necessarily a good idea for people with medical conditions, some of the things that might be great for a regular person could cause problems for someone with Crohn's - for example insoluble fibre can cause issues when if you've got strictures in the small bowel yet general healthy eating advice is to eat plenty of it. Same issue applies to personal anecdotes from others etc... some things suggested might be useful, some might be the complete opposite and others might be inconsequential and simply something that person believes worked.
Be careful with nutritionists too, it isn't a protected title and anyone can call themselves a nutritionists - it is "dietitian" that is the regulated profession that deals with diet and requires specific qualifications and can work in hospitals alongside other medical professionals. While nutritionists might well have varying degrees of training, qualification they're mostly going to be uninformed about IBD or likely at best no better informed than any patient who can used google too - they're not professionals they're just unregulated people dishing out advice.
Soldato
My nutritionist is guiding and easing me slowly into it, so I am not fully paleo yet, and she has been giving me her own guidance docs, but I thought this was a useful visual summary:
https://i.pinimg.com/originals/0a/9e/d4/0a9ed46e094e4d2f17f1180dd263d882.jpg
Interestingly, as I didn't know this, half of the grains are gluten free, yet I still should avoid most of them. Only three I've been told are passable in small quantities. I've made it my resolution to learn more about nutrition this year, as opoosed to just take advice for granted; I want to know why.
Imo, it is worth a shot. I don't have much to lose other than a couple of hundreds of pounds of fees and on supplements - the diet itself seems very healthy, otherwise it's mostly grain based carbs and sugar I am truly missing. It will make eating out more difficult. But if it proves to work, it may bring a lot of worthwhile respite and prevent flare-ups.
Just to be clear myself, I wasn’t trying to suggest you don’t know what you’re talking about mate. You’ve been ill for a long time, and as sufferers, it’s always us as individuals who know our own disease best.
Unfortunately relief isn’t quite what I’ve found, in addition to my pan colitis (with chronicity), my pancreas, liver, thyroid, joints and other parts of my body are affected by my immune disorder, not to mention the the possible (and in my case present) side effects of the drugs we’re forced to take. My UC is, however, under control for the most part, which is awesome. I narrowly avoided full removal and for that I am so thankful.
I totally agree with your point in approach to treatment. For me, the NHS is far too focused on dealing with my individual illnesses, rather than looking at why so many of my organs are failing or malfunctioning. They just want to treat each problem, individually, as it arises, rather than find out why it is happening.
The problem here, as I see it, is twofold.
1) Money and time. Even though in the long run, looking at the root cause of conditions would probably save time and money, the NHS seems to be in a constant state of fire fighting. And as such don’t have the significant rescources required to tailor a deep investigation into the root cause of a persons conditions. Especially when conditions like ours, whilst awful, aren’t generally life-threatening.
2) The NHS seems restricted by tick boxes. If you can’t easily be categorised and have a blueprint applied to your treatment, doctors lack the freedom to investigate deeper into the issue. Every scan, test and drug needs to be justified, at least to some degree, and when there’s no (as of yet) explanation, they can only default to point 1.
I don’t doubt that if I were to spend enough time and money in the private services, I could get a better answer, and ultimately treatment. Unfortunately, as I’m sure we all know, the cost for people like us to follow this course of action is prohibitively high. Decent Health Insurance is laughably out of reach for most of us, especially as illness inevitably proves detrimental to our careers.
With all that said I think the NHS is awesome. They’ve saved my life more than once, and the people within the service (for the most part!) are genuine heroes, and deserve fame and adoration far above that garnered by whatever reality star has recently leaked a sex tape or won some vapid competition.
As for links to Proctitis, not really mate. I’ve suffered it only twice, and both times it was considered by my consultant something to be ‘fixed’, rather than ‘managed’. I tend to get my information from the NHS, Chrons & Colitis UK, and lectures I find on YouTube intended for doctors rather than us mere mortals.
Wish you well with it fella, good luck.
Always best to seek medical advice from people experienced with your disease when you’re considering a significant change in diet. There are dieticians / nutritionists familiar with IBD, but from my experience they’re quite the rarity.
I was a bit lucky as before I became ill I was a long time PT, and nutrition was a passion of mine. I put together an anti-inflammatory plan, which began with exclusion/low residue, and slow introduction and experimentation of specific foods with specific nutritional profiles and benefits. It took a long time to find the right plan.
I think for most people, less dairy and limiting processed foods can be beneficial. Hopefully you can find a supportive professional who can take you down a path that’s beneficial for you. Good luck mate.
Just had a chat with my nurse and I’m going to be starting with Infliximab infusions within the next two weeks as my current treatments are not working very well. My iron level is also very low so I need an iron infusion to bring up my levels I’m not absorbing from food...
Must admit I’m a bit scared but also hoping it works. Reading the information leaflet is fun especially when suffering with Anxiety.
All good fun...
Must admit I’m a bit scared but also hoping it works. Reading the information leaflet is fun especially when suffering with Anxiety.
All good fun...
Associate
Man .. i don't miss those days at all its such a hard thing to have to deal with. since my surgery i have never looked back .
i hope you get better soon and the Infliximab works for you
i hope you get better soon and the Infliximab works for you