Wednesday, 7 May 2014

Colitis Springs back

Well, another entry for my rather erratic blog! I think writing pages for the website AND the blog means the blog suffers somewhat. Still, better late than never!

So since the last entry, I managed to avoid another flare until around halfway through January, when I had the sinking feeling UCers are all too aware of after experiencing initial symptoms of a new flare-up. It was disappointing because I'd hoped to remain symptom free until at least Spring.

Looking back at my diary (you can see an edited version of this flare-up on the diary of a flare up page), I have a suspicion that the combination of feeling rundown  - perhaps by a low level virus, and eating cabbage over a few days may have been the catalyst for the flare this time around. With reference to autoimmunity, you would consider the virus to be the main suspect.

There is of course another reason that I'm all too aware of, but tend to push to the back of my mind - that of diminishing returns from my meds. As I pointed out in previous blogs, I try to taper off my 'maintenance' meds when in remission. Some consider this foolish, others take the same view as me and prefer to move over to natural 'meds' when there is a lull in symptoms.

I'd managed to get my oral mesalazine (meslamine, 5-ASA etc.) down to 2 x 400mg per day from November. I decided to stay at that level because most of my flares start in Autumn or Winter and I'd hoped it would see me through. This level seemed to work well for a couple of months but was not enough to prevent the flare in January. I'm now left wondering if the flare would have started even earlier had I tapered to 1 x 400mg in December e.g. it was the tapering of meds that led to the flare. My constant experimenting and my diary will hopefully (eventually) reveal the answer to this.

The good news is the latest flare has passed and I'm still positive that there are many routes to try outside of my prescribed meds. For instance, I'm shortly planning to introduce (and hopefully cross over to) Boswellia as an alternative to the mesalazine.

Finally, and I wasn't expecting to write this! Thank you to those who sent positive messages and comments about the website. I'm really pleased it's helping UCers (and IBDers) learn about Colitis and different approaches to it - it's exactly what the site was built for. Also, to those that are having a tough time at the moment, take one day at a time and try to stay positive - tomorrow is a different day.

Monday, 16 December 2013

Winter, Xmas, stress and Colitis!

I realised I hadn't written a blog entry for a while, so I thought I'd give my experience of Xmas (or winter if you prefer) and the stress it causes in relation to Ulcerative Colitis.

A pattern is emerging for me, and I'm beginning to realise that the start of winter and the lead up to Xmas increases stress; lowers my immune system and leaves me open to symptoms of a flare-up - and it would appear that I'm not alone!

I've seen quite a lot of IBD sufferers asking whether anyone else experiences flare-ups each winter. Some of them flare-up every year, almost to the week, others noticed that they went on holiday and the flare didn't happen. Most surmise that this was due to the warmer, sunnier weather. Hmmm, perhaps us UCers should increase our vitamin D in the winter?

If I think back to the most recent flares I've had, they both started towards the end of the year in 2010 and 2012 - around the end of October and into November to be more precise.

So, this is actually quite useful knowledge for Ucers that have noticed a similar occurrence. It's rare that Colitis sufferers find a period where they can start preparing for a possible flare-up! However, that's precisely what I've done this year.

I've been through a couple of periods with cold symptoms that I've managed to weather, without descending into a full blown flare-up. A cold in 2012 was part of the reason of my worst flare to-date. I've also managed the stress of Xmas much better along with sticking to my 'real food' regime. In fact, I've kept more or less the same diet for the past four months.

The good news is that, so far, I've managed to stay away from the dreaded full blown flare-up. Don't get me wrong, I've had a few symptoms appear here and there, but nothing major. I've put a couple of them down to food changes I made for a couple of days and other symptoms down to feeling rundown.

I guess I've looked after myself a lot more this winter, whether that be sticking to my diet, increasing supplements when I felt changes or taking more rest at times I felt rundown. It would be great to take control of Colitis wouldn't it? Of course I haven't done this, but I have 'managed' it, to a fashion, and that's much more preferable than an out-of-control nosedive into a flare-up.

I'll include more details of my winter anti-Colitis 'campaign' on the UCer remedy ideas page. But for now, I'm still hoping to get through to New Year at the same level of health. I hope anyone who reads this has the same success.

Monday, 28 October 2013

It's Taper Time!

It's about this time of the month that I get to see how I'm progressing in relation to decreasing (or tapering) my meds - every month since July I've been decreasing the dosage by one tablet.

It takes between 2 to 4 weeks for the Mesalazine tablets I take to have an effect on the symptoms of my Ulcerative Colitis. Last time I tried to taper my meds it was at the end of the month that I saw changes.

During my last flare-up, I managed to get down to 1 tablet per day before the symptoms started to reappear. This was a surprise to me because every flare-up previous to that I'd been able to stop the tablets completely and carry on as normal. But perhaps that's where I was going wrong, because my 'normal' then is not good for my Colitis now.

So I'm nearing the same point again and I have to admit it's playing on my mind slightly. If I look back at the diet I had when I got down to 1 tablet, I can see it wasn't good enough and I'm annoyed that I slipped up. Although perhaps I'm being a bit hard on myself, after all, Colitis is a continual learning curve and I feel I've learnt more in the past few months than I did in the 18 years I had Colitis before that.

My tapering regime is a long process, but this time I'm staying alert and also sticking to a more strict diet - no relaxing of the rules just because there are no symptoms! So, on Friday I'll be dropping down to 2 tablets per day after successfully getting through the 3 tablet barrier.

I'm positive about my progress and even if I do see symptoms start to appear again, at least I'll have found a minimum level at which I know my Colitis can be 'controlled'. However, there are so many things for me to trial in replacement for the meds that I'm still convinced, in a glass half full kind of way, that I can get off of them fully - time will tell!

For the time being, I'm hoping my more disciplined approach to this taper will see me get further than last time.

2 tablet November? Let's be having you!!!

Monday, 14 October 2013

Maintenance Meds

Well, I thought I'd post my views on this subject as it's something I've seen referenced in some colitis forums recently.

I hope my views don't offend anyone. I say this because some UCers have no choice but to use man-made meds, which have helped them to get their life back. I'd like to state that I would not argue against anyone making that choice and I completely understand why they would continue with the meds. I've used mesalazine many times over the years to help me out of flare-ups.

Actually, my views are on the 'maintenance' aspect of meds as opposed to the meds themselves.

Last week I read a post by a UCer who questioned maintenance meds - they asked whether taking meds and keeping the inflammation down whilst in remission was better than not taking them and avoiding the side effects of the medication?

This is an interesting point and a question that can only be answered in the long term on an individual basis, after all, who knows how long term meds are going to effect them? I guess my angle is that once you manage to calm your Colitis symptoms down and regain control of your life, isn't it a good idea to start looking for natural equivalents to replace the man-made meds?

I'm not talking about making drastic changes, I mean experimenting slowly and cautiously to see if there are any adverse effects as you taper meds down and replace them with natural supplements/diet etc.

To follow on from this, and relevant to maintenance meds is a question I ask myself concerning diminishing returns. That is, does the body adapt to meds over a period of time, thus making them less effective? If so, surely it's another good reason to attempt to replace man-made meds with a natural equivalent where possible?  Then, if there is a time when you need to use the same meds again, the body will get a benefit from them because there has been a period without usage.

These two points are the reason I continue to look into natural replacements for Colitis meds and why I'm always pleased to see a post by someone who has managed to achieve a positive result using natural remedies.

Wednesday, 25 September 2013

Colitis Diary Pays Dividends!

Recently my Ulcerative Colitis Diary has become more useful. This is mainly due to the amount of time I've been keeping it, and in some part, to how indepth it is.

If I look back I can see that I started filling it in on a regular basis about 11 months ago, before that I'd left it for long periods when my flare-ups had subsided. The diary covers what I eat, my meds and symptoms I'm experiencing. Here's a link with more information about my colitis diary.

The most useful bit of information it has given me recently is how long food takes to cycle through my digestive system. This is notoriously difficult to work out due to the many factors that can effect our metabolism / digestion.

The amount of time food takes from eating to exit (in a healthy person) can range from 8 hours up to 72 hours. Here's a link to my website about digestion and the colon. Most people assume it takes about 24 hours - I know I did and it's what I hear from others if I ask them how long they think it takes.

My diary has revealed that my digestion cycle takes almost 72 hours, which in turn, has made me realise that I've blamed some of the wrong foods for my Colitis symptoms in the past.

This discovery was only possible because I continued with a 'remission' diet similar to that of my flare-up diet. The reason for this, apart from being a more healthy diet, is that I'm hesitant to eat much else in case it brings on UC symptoms. For what it's worth (we're all different when it comes to UC) here's a link to my Coltis diet 'remission' regime.

It has taken some determination and will power to stick with the diet! There have been times when I've had a tasty item of food in my hand, had a flash back to how ill I felt during my latest flare-up and begrudgingly put the food down!! Other times it has been very close to me saying sod it and eating it anyway!!

So now I've kept a similar diet for so long, I've discovered that trigger foods will produce symptoms after approximately 3 days. Interestingly, I drank some water with a slice of lemon last week (I'm not good with citrus but thought this might be okay) and it caused symptoms within 4 hours, this is because it was liquid, not solid.

So I guess the lesson to achieving an accurate diary is: firstly keep the diary going (even when it seems like a chore); secondly stick to a similar-ish diet. Eventually the diary should start turning up useful information, sometimes when you least expect it.

Thursday, 29 August 2013

Where I'm at...

If I was writing a report about my current UC condition I'd say, "it's good, but it could be better". This is because I'm still taking mesalazine tablets and my thought is that if I have to help my body with man-made drugs then it's not working properly. Personally I can't call it remission until I am drug free, but that's just me!

There are plenty of UCers who are happy to get to a place where they have a normal life on maintenance drugs and I can't argue with that. The phrases, 'each to their own' and 'horses for courses' was invented for this disease I think.

At the beginning of the year I started to improve from my longest and most recent flare-up. I slowly decreased the mesalazine tablets as I have always done until it got to May, when I was down to 1 tablet per day. However, unlike previous flare-ups where I was able to stop the tablets, this time mild symptoms began to increase as I continued on 1 tablet per day.

Wisely, before things deteriorated, I immediately increased the dosage to 6 tablets a day which meant I only experienced a mild flare-up that lasted until about 5 weeks ago. However, if I look back at my Colitis diary, I can see how I lapsed back into eating the wrong things. For someone with a disease of the large colon I am annoyed I allowed myself to do this!

I'm not saying my diet was terrible, I've learnt that I have to be careful with my staple diet, I can't allow man-made/processed foods to become part of my routine. However, I had started eating them occasionally. That, along with some BBQs and the odd snack, meant that I was creating work for my system.

So where am I at today? Well, I've started to decrease the mesalazine tablets again. I'm about to go to 4 per day in September (I decrease the dosage by 1 tablet per month). This time however, I'm watching my diet very carefully (my current regime can be found here). I've learnt that not only do I have to change my diet until my symptoms improve, I now have to stick with it.

I'm also hoping to help my entire digestive system by adding new healthy areas to my regime, for instance, I've recently begun juicing - and that's a topic for a new blog post!

Welcome to my Colitis Blog!

First of all I'd like to say hello to anyone who reads this! Welcome to my first post on my first blog!

Blogging isn't something I thought I'd find myself doing, perhaps because the internet seems to have so much information in so many places by so many people. Literally billions of pages of text of which I'm sure most aren't read!

However, when a blog contains information that might just benefit someone's health, I think it becomes a lot more important. In reference to Colitis, I know how much I've searched around for ideas, info, symptoms, diets, food types, research papers, meds etc. etc. Suddenly the world wide web reveals just what an amazing innovation it is!!

To think that when I was first diagnosed with Ulcerative Colitis (the mid 90's), there was hardly anywhere to find information on it and even though I'd never heard of Colitis, I don't think the specialist even gave me a pamphlet to look at!! You have to laugh!

So the reason I've decided to start this blog is partly because Colitis is so individual that I believe there IS room for yet another blog and partly because it may be a useful record to look back on with reference to the UCer website.

You could read 50 blogs by UCers and their diet, meds, symptoms won't match your own. So, I'm hoping this blog might give someone with IBD an idea they hadn't thought of or the incentive to try something new in the fight for remission. This then, is a good enough reason to add more text to the world wide web!! :-D