Worst…flare-up…ever

Image credit: wikipedia

Whether the flare up was caused by the iron infusion (the doctors don’t believe this at all) or whether it was some other reason its here and i’m having to deal with it.In the immortal style of the Simpson’s Comic Book Guy – WORST FLARE-UP EVER.

As well as the bleeding and the urgency this time – and for the first time since I got UC – the inflammation is systemic. This has manifested itself in swollen and painful joints and some inflammatory nodules which have appeared on my lower legs known as Erythema Nodosum. Needless to say this is painful too!

Upshot of this is i’m going back on prednisolone for 8 weeks.

I’m pretty gutted about this because I thought I was getting somewhere with diet/lifestyle alone. But you gotta do what you gotta do and this flare had been going on for 2 weeks without any sign of getting better. Its only a short course of prednisolone and, to be honest, could be just what I need.

I’m stuck in a bit of a rut at the moment – jobless, lacking a social life, out of contact with friends, underweight – so it could be that the pred remission can allow me to get my mojo back and get back out in the big bad world and also put some weight on by adding back in some foods i’ve not got round to adding into my diet. I will try to be careful not to add in anything I can’t tolerate but i’m not sure that i’ll be able to tell if the pred masks the symptoms.

Anyway, the plan is to see out the 8 weeks getting up to my optimum weight of around 10 and half stone (i’m currently about 8 and a half) so when I finish the pred i’ll be better nourished and have a better body foundation to carry on the fight. I will go back and start the SCD again with a few days intro but this time – and this really is going to be the big difference – I HAVE to push on with more purpose and with a much more positive mindset in order to get my diet to a better place so I don’t end back up where I am now in the next couple of years.

This is like a second chance for me and, without sounding too melodramatic, time is running out to get back to and start living the life I should have.

Postponing PHD experiment

Unfortunately i’ve had a bit of a flare up of my candida issues. This may sound odd in a conspiracy theorist kind of way but the problems started the day after I had an iron infusion. Ironically I hadn’t seen any blood in my stool for about a month before that (even though I had a big die-off over Christmas) and now i’m passing blood again. Grrrr. The timing fits and also the fact that the iron infusion is a ‘sucrose solution’ makes me think that the sugars could have fed the yeasts. Couple that with the fact that I had just had a die-off which may have created the gap for the opportunist yeasts to make a comeback.

I’m gutted as I had been on an upward cycle and was expecting things to carry on improving post die-off (they always did after previous die-offs) and this is another annoying setback.

The one useful thing that has come out of this flare-up is that I was very aware of how the candida must be at the root of most of my anxiety/depression issues. during December I when my bowels were improving I was starting to get so much more confident and thinking about the toilet a lot less. The day after the venofer iron infusion my heart was pounding my guts churning and I just felt so down. This lasted a couple of days and culminated in a mini breakdown when me and my girlfriend had a little cry and talked through a few things. I said to her at the time that sometimes I feel like when i’m feeling on such a downer I have to go right down and hit the bottom in order to to bounce back up again.

My bowels still are not great but i’ve got the anxiety a little more under control. I’ve started my mindfulness meditation practice again and am going to be starting on Kolorex Horipito anti-fungals.

Hopefully as i’ve been aware as soon as the problem started it shouldn’t take too long to get it under control. I never want to feel like that again.

So, as mentioned in the title, i’m going to postpone my PHD safe starches experiment as I don’t think i’d be able to notice the effect at the moment. Soon though…

HH

An update on me and my progress

Hello. This is the first post I have written for quite a while. I have a few reasons for this but telling you that i’m a lazy procrastinator pretty much covers it!

I want to cover a few issues in this post and then will blog about some of them in more detail in the coming weeks. The things I want to cover are:

• Moving my blog and changing its name
• Why my diet can will no longer be completely SCD and how I came to this decision

New year, new blog

Firstly, welcome to The Healthy Horse! Leave your shoes by the door and come and make yourself at home by the fire! Not really sure how people are going to find this blog (not that a lot of people ever found it in its previous guise) but I feel this reincarnation is the one and i’m really going to try and write more and interact with the UC/diet community.

This blog was previously called myscd but I always felt hamstrung by this. Also I always invisioned writing a blog more like some of the great SCD blogs out there like scdlifestyle, Eating SCD, Straight into bed cake-free and dried, Comfy Belly, Natural Digestive Healing, etc. (note to self – sort out blogroll) with recipes and stories of success and when this didn’t happen for me and my diet was too restricted to experiment and invent this was another reason to put me off blogging.

But cometh the new year, cometh the new Mike! It would be somewhat poetic and apt if 2012 was the Chinese year of the Horse but sadly the fates conspired for 2012 to be the year of the Dragon (next year of the Horse is 2014) but its still going to be an excellent year for me.

The ‘Healthy Horse’ title gives me more room to not just talk about my health and my diet (it’ll still be my primary topic no doubt) and hopefully will show my progression back to health and a normal life.

The title is more of a future projection. I’m not exactly a picture of health – or if I am then its currently something by Salvador Dali! I’m a work in progress but feeling really optimistic about the coming months.

My Perfect Health / Specific Carbohydrate diet (PHSCD)

To tell you the truth, i’ve been bumbling along not really getting anywhere with my health for a while. The problems started for me after about a year on the Specific Carbohydrate Diet when I started on a combination of oregano oil and Natren probiotics (including bifidus which isn’t recommended on the SCD). Something in this combo or perhaps some unknown external factor sent me spinning into the worst flare i’d ever had. I ended up so fatigued and anemic I had to go on iron tablets and it really effected every area of my life.

The most annoying outcome of the flare up/screw up was the yeast/candida issues I ended up with. I had never had any trouble with this previously – I was able to eat all the fruit/yoghurt/honey as I liked on the diet which is of course where most of the ‘specific carbs’ mentioned in the diet come from – but now I really had to watch my fruit and sugars intake as providing food for the candida made my symptoms much worse.

I didn’t really realise this early on in the recovery and spent the next couple of years yo-yoing. I would take antifungals to get the yeast symptoms under control (symptoms: fatigue; dry/cracked mouth; furry tongue; heartburn; brain fog; mood swings; blurred vision; looser stools and urgency) and then when I was feeling better i’d jump straight back on the honey and fruit partly to help with the fatigue but partly because they tasted nice but this would bring the yeast symptoms back.

I found this particularly hard because I never really got past stage 1 of the SCD diet (according to the stages listed on the pecanbread website) and I never got on with nut butters/flours and when I cut out the stewed apple/pear and the yoghurt I was only left with a handful of vegetables, eggs and meat. It was hard to get enough calories on this strict diet and so the weight started to fall off. I was never at my optimum weight (10st 7 or 149lbs) at any time while on the diet but It was not something that every worried me but when it continued to drop and finally plateaued (around 8st 7 or 121lbs) I did start to worry about it.

The problem was I believed in the diet even though I wasn’t really doing to the diet! Sounds odd but I was on such a restricted version that there was no way I was going to be nourished enough but to be nourished enough on the diet I would have to eat foods that my fragile guts couldn’t handle or go back to the legal carb sources which would more than likely bring the candida symptoms back. I needed to break my own vicious cycle!

There was no way forward for me and I recently started to think that me and SCD were going to have to part ways. I though about maybe going back on the steroids just to give me a bit of support while I tried to increase my diet without upsetting my guts but I didn’t really want to do that. I’d be causing more damage and the steriods would mask the symptoms. Even though the diet has been really hard and i’ve not really been able to live normally during this time, it has probably still been helpful and soothing to my gut lining and I wouldn’t want to undo that damage by eating foods I couldn’t digest. Arrrrrgggghhhh! What to do!

I started looking into other diets that had helped other people. Around this time I can’t remember exactly why now but I bought Robb Wolf’s book The Paleo Solution. I wish I could remember what sent me down the paleo route but I honestly can’t. Most likely incessant googling. As I read it I realised it wasn’t going to provide the magic answer for me and wasn’t hugely different to the diet I was currently on. But it did provide food for thought.

The answer (or at least the first piece of the puzzle) came in tweet form from scdkat who was tweeting from the Wise Traditions Conference 2011. I can’t find the tweet now but it alluded to how some people with fungal issues as opposed to bacterial issues don’t do well on low carb diets because the body produces ketones which feed the fungus. The best thing to do is have a small amount of carbs which will nourish the body but will not feed the fungus. Here is Kat in her own words from her excellent website:

“…people who have bacterial infections tend to feel great on low carb (this was me) because bacteria mainly feed on glucose. People who have fungal/parasitic infections do horrible on low carb (I’ve seen many on SCD with this experience) because these feed on both glucose and ketones which are produced by the body on a low carb diet. For people with these infections, eating some carbs that you can digest is best.”

Kat was attending a talk by Paul Jaminet, the co-creator (along with his wife Shou-Ching) of the Perfect Health Diet.

This was a real eye-opener for me. Could it be that even though I was eating an anti-candida diet, it was possible that I was still feeding the yeast bugs? Wow. So I started reading up on the Perfect Health Diet (PHD) to find out what I could do about it. I obsessively read everything on the website and ordered the book but by the end I was armed with a lot more information, some new ideas and a reinforced resolve to beat ulcerative colitis through diet and lifestyle changes.

As Kat alluded to, the main difference between the PHD and SCD is the inclusion of carbs (to provide glucose) in the form of what PHD creator Paul Jaminet calls ‘safe starches’. These include potatoes, sweet potatoes, taro, tapioca, sago and white rice. As with SCD, all other grains and some legumes are out because of there toxins and difficulty to digest.

Eating a moderate amount of ‘safe starches’ can provide the body with glucose which will be utilised before it the gut bacteria/fungi/parasites can get their filthy mitts on it. This will also stop your body entering a ketotic state which is when it produces ketones which the fungi can feed off.

From what I have understood so far, (so much information and new terminology!!) the SCD is great for bacterial issues as the diet removes the carbs which they feed off but might not be so great for fungal issues (of which candida/yeast is one). This is a perfect description of my story because I did great on the SCD initially (when it was a bacterial dysbiosis at the heart of my problems) and continued to improve and had the tell tale die-offs too. Then when the candida reared its ugly head my very low carb (VLC) approach left me pretty much in limbo trying to fight a battle that maybe I couldn’t win.

The only way I can find out for sure is to give it a go and so that is what I have been working up to for the past month or so. I have already tried white rice and wasn’t able to tolerate it. I should say at this point that the Paul Jaminet believes that most modern ills are caused by or have some connection with infections (be they gut, brain, cancer etc.) and the PHD is aimed at dealing with much more than just IBDs. The issue IBDers might have is because of a compromised/inflammed gut, they might not be able to tolerate the fiberous starches that the PHD recommends. Fortunately there are a couple of safer ‘starter’ sources of glucose that us weak-bowelled folk can try such as rice syrup and dextrose. I am going to try rice syrup next.

Here is an graphical representation of the diet. (© PerfectHealthDiet.com)

One point about glucose that Paul made was that the body needs it to produce mucins including the mucus layer that protects the bowel wall from damage. One sign that the body is not producing enough mucins is dry eyes/mouth and I definietly have had both of those. The hope is that if I can improve my mucus production then maybe it’ll increase my bowel tolerance and i’ll be able to add in more of the yummy foods shown above.

I’m definitely going to give this a proper go and am feeling very confident about it. There is a growing number of testimonials both on the PHD website and Amazon that show that people with bowel issues (and a whole host of other problems) have found the PHD and particularly the adding back in of starches to their diets to be key to conquering their problems.

I’m going to do post my experience with adding in some PHD ideas to my diet starting from next week when I try adding rice syrup. There is a lot more to say about the PHD - I haven’t even mentioned the macro/micro-nutrient recommendations – but i’ll go over that as I progress. Wish me luck!

HH

What i’m taking / eating

FOOD

After nearly 3 years on the SCD i’m still on a very limited diet. I have tried to move forward into the important areas like nuts/dairy etc. but always noticed something that i’ve interpreted as a bad reaction. After that I always reasoned that trying something new and having a set back wasn’t worth the 2 or so weeks it would take to get back to a place where I could felt I could try a new food and be able to see if there was a reaction or not (another vicious cycle!) so i’d just carry on with my safe foods and hope that not pushing things would be better in the long run.

So this is where I am foodwise (and pretty much have been for the past three years):

Vegetables (roasted or cooked and recently with skins left on)
Courgette / Zuchinni
Carrot
Bell peppers
Spinach
Butternut squash (I had a soup last week and it seemed OK)
Garlic

Vegetables (juiced and raw)
Celery
Carrot
Cucumber
Ginger
Garlic
Salad leaves

Fruit (stewed and recently with skin left on)
Apple
Pear
(stopped eating banana recently)

Pretty much all meats except bacon

Drinks
Water
Green tea
(recently stopped drinking fruit juices)

Looking at the list written out its not looking too bad actually! Obviously lacking at the moment in any kind of fats. I gave up eggs and SCD yoghurt for a while to see what would happen if I excluded them. It didn’t make a huge difference but when I tried adding them back in I felt that I noticed some kind of reaction to both of them (on separate ocassions). I have since tried goats yoghurt and have decided that is not for me too but i’m going to give that another go soon. Lacking too in energy-giving foods like nuts and seeds but i’m getting by at the moment without them.

I think i’ve got an issue digesting fats as i’ve noticed that fatty meats/nut butter have given me a bad reaction in the past so one of next planned steps is going to be digestive enzymes to see if that helps.

Medication / Supplements

My main issue with supplements and meds is that I take a whole bunch of stuff but I don’t know what each one brings to the party! The meds i’ve been on for about 9 years now and i’m slowly trying to wean off them. Particularly the immunosuppressants. I have no idea what good they actually do for me – I only started them to wean off the steriods – and I don’t really like the thought of my immune system being suppressed when a lot of the meds / supps / general thinking these days seems to lean towards boosting the immune system. Anyway i’m down to 1 50mg tab every other day now so hopefully won’t be on them for too much longer.

Here are the meds and supps I am currently taking:

Meds
Azathioprine (immunosuppressants) 50mg x 1 every other day
Balsalazide (anti-inflammatories) 750mg x 4 a day

Supplements
Freeda SCD Multi vitamin x 1 a day
Freeda SCD Calcium x 1 a day
Freeda SCD B Vitamin Complex x 1/2 a day
B12 drops x 10 a day
D3 drops (4,000iu) x 2 a day
L-Glutamine capsules (250mg) x 3 a day – a recent addition that seems OK so far
Fish oil/EPA (1,000mg) x 4 a day
ADP (oregano oil) tablets – was taking 4 a day up until this morning when I have stopped to see if it is this that has caused the bleeding
Milk thistle 200 – was taking 3 a day but will cut down to 2 as i’m not taking the oregano at least for a while
Spatone natural iron supplement x 2 sachets a day

Phew! I think that’s everything. As I said the supplements seem like a house of cards to me – together they are doing something right but i’m not sure which ones are supporting the weight but I wouldn’t want to remove one in case the whole deck comes crashing down!

I also have some supplements lined up that I want to try or have done in the past but want to try again but just need to wait for the right time so I could properly judge their effects:

Possible future supplements

• DHEA – a hormone naturally produced in the human body but one I might be low on because of my UC and because of my stress issues
• Aloe Vera – I found out this morning that you can now get George’s Aloe Vera from amazon.co.uk! I’ve heard about people having success with this particular product even when other aloe vera supplements have caused irritation. Apparently it is because the George’s one is specially processed to remove the bitter taste (apparently it tastes like water) and also the starches and sugars from the polysaccharide molecular chain.
• GI Pro Prozymes digestive enzymes – something that I have tried before but I felt it made my symptoms worse. I’ve since seen instructions to go as low and slow as you need to get your body used to it (starting as low as 1/8 of a capsule per day. I want to give these another go particularly as I believe I have issues with fat digestion. Difficult to monitor though if I did it while doing FT.
• Vitamin E – again something i’ve tried in an enema form which really didn’t work for me but might be of benefit to take orally.

A fair bit for me to be going on with! Its just finding the time to do it and taking the risk that it is going to set you back a couple of weeks and could incapacitate you for a couple of days. Not easy particularly when you are looking for a job.

Looking at this in writing has been a useful exercise for me – not sure it’ll make as interesting reading for anyone else! I think the overarching message from this is that i’ve been stuck in a rut of my own making for a while now. I don’t really have any medical help. The GP and the Gastro that I see are very much down-the-line allopaths. It seems to me that the American system of healthcare, while more expensive, allows a lot more choice and the freedom to see a doctor with more natropathic leanings. So i’m kind of going it on my own at the moment. I have seen a natropath and a few nutritionists but I haven’t found any that have the ability to prescribe anything or get any tests done or for that matter are aware of the Specific Carbohydrate Diet.

The battle continues…

Fecal transplant update Oct 2011

I kind of got side-tracked with blogging about the my fecal transplant progress. I got made redundant the day before I started (great timing I know!) and this really sunk in when I had to start looking for a new job and going to the job centre. I got pretty down and didn’t much feel like blogging even though things did improve.

I had an FT window of about 8 days in which I wanted to fit in as many infusions as possible before I went on holiday for a week to Centerparks. It wasn’t until I was on holiday that I really noticed things improved greatly. That’s kind of an understatement. I had the best week i’ve had for about 2 years! I was pretty regular in the morning and it was a bit urgent but I knew after a few BMs that I was done for the day and was able to go swimming and play tennis and badminton and go rollerskating etc. with minimal worry. I’m sure that being on holiday and chilling out and forgetting my worries really helped as well but the FT definitely had some kind of effect. I’ve seen what I can achieve now if I can get my head to work properly!

Things took a bit of a dive when I got back from holiday – reality bit hard I think – but since then i’ve started FTing again but this time without the prep. I’m hoping that i’ll be able to make a difference just using the healthy gut flora implants. I’m going to do this for up to a month and see how things go and then maybe leave it a little while and try again with the proper preparations just not so rushed this time.

One thing I am absolutely sure of is that my mental state / anxiety issues are playing a big part in my problems. I can stress myself into a mini-flare pretty easily and my mind seems to spiral out of control. I’m working on a couple of things to be able to stop this when I notice it happening which i’ll explain in another post.

Just in the last couple of days i’ve started noticing a bit of blood which is really frustrating. In a very ‘me’ way, as well as restarting the FT, i’ve pushed on and started a couple of new supplements at the same time. They are ADP (oregano oil tablets) from Biotech and a milk thistle supplement for liver support. I’m taking these for a persistent yeast issue which I think is going to hold me back with the FT. I’ve stopped the ADP this morning as I imagine that it is these that are irritating my gut. Hopefully the bleeding will stop now.

Fecal transplant: day 6

Got pretty stressed out today worrying about having to go to the job centre tomorrow I’ve not actually been out since losing my job last week. Life is so much easier when there are no stresses!

Was so stressed and clenched that I couldn’t get the enema tube inserted and when I did it made me bleed and fell out mid ft. Nice.

Decided to abandon enema tube and syringe method. Tube was to get it as far in as possible but its not worth the pain. Problem with the syringe is I think it was only made for single use. After a couple of uses it became literally impossible to push the plunger down. Something I also found out mid FT!

Symptom-wise, difficult to say still I think. I’ve definitely had more energy in the evenings but then I have not been out so that might have something to with it.

Fecal transplants: day 5

Did an infusion last thing before bed and was able to hold it until morning!

Only about 40ml but its got to be good that even a small amount is held for that long.

No bm first thing. A bit of wind. I was expecting the infusion to come back out but it seems that my body utilised the whole infusion. I’m not sure – I’m no scientist.

No proper bm yet today so can’t say for sure what is going on.

Might update later if there is anything worth mentioning.

Fecal transplant: day 4

Phew! No ill effects of imodium. Had a couple of BMs this morning. Quite well formed but there was a slight feeling of urgency so i’m not cured yet! Still smell like my donor’s stools so i’m taking that as a positive sign.

First time doing the whole arrangement for myself this morning. Donor left sample in fridge before going to work so I had the fun bits to do. Went pretty smoothly actually!

Was able to hold the infusion for about an hour and a half. Never fully got past the feeling of needing the toilet which came and went during this time. When I did go it didn’t feel like a big enough BM for the full infusion to have been lost so it seems I was able to retain some of it which is good news.

Followed this with some good pre and probiotics and a reasonably high-fibre lunch.

Plan is to do another FT last thing before bed and try and hold overnight. This is if my donor can produce for me!

With regard to symptoms/changes it was impossible to tell anything while I was under the influence of the the imodium. The BMs this morning were not too urgent and with minimal cramping but that is kind of where I was just before starting FT anyway. One thing I can say for certain is that FT hasn’t made things any worse and as that was only my third infusion i’m hopeful that I haven’t seen the last of the improvements yet.

Got up until Sunday to carry on with this bout of FT as i’m going on holiday on Monday and it isn’t going to be practical to continue. Might pick it up again afterwards – have to see how things go this week. Should be able to get a total of 7 or 8 in a row. Whether that is enough, only time will tell.

Fecal transplants: day 3

Wasn’t able to do FT today. It seems the imodium works particularly well. I waited as long as I could last night but as I hadn’t had a BM all day, I didn’t think it was a good idea to put more poo in - I was feeling a bit backed up as it was!

A bit frustrating but hoping I clear out tomorrow morning and then i’ll be able to do an FT late morning (I got made redundant last Thurs so i’ve got all the time in the world to work on my health!)

Fecal transplants: day 2

That’s more like it!

Went for less water this time. Not as much quantity-wise but as Dr Borody says: it’s quality not quantity.

Also took imodium a couple of hours before starting. Have managed to hold it since 11:30am and it is now 8.20pm.

I don’t know how of today’s success is down to the imodium and how much is down to the thicker mix. All I know is it stayed in!!

There were a few moments when I thought I was going to have to let it go but passed.

I’ve tried to change my diet a bit over the past few days. I read that it important to eat a high fibre diet during and after FT to help the new gut flora to settle in so I’ve have left the skin on the roasted veg and stewed fruit (got to start somewhere on my restricted diet).

Also I’ve been eating food high in prebiotics – asparagus, garlic, bananas. Apparently raw chickory root and Jerusalem artichoke are the most abundant foods but they are not Scd legal.

I cooked the asparagus tips a small amount and plan to juice the stalks as well.

Tomorrow I’m going to switch to a night infusion and do it just before bed. This way – assuming I can get to sleep – I can hold it for 6-8 hours without having to give it any thought.