Latest Check Over and Colonoscopy

So I have just seen the doctors for a recent checked up. All is going well. The Azathioprine seem to be working well for me and I am glad to be back on them.

The doctor was happy with me and I have been feeling well. I was due a colonoscopy to check things over which I had today. Never pleasant. Taking the laxative and having that rumble in your belly is not nice. Luckily I have had a few colonoscopies before, so kind of took it my stride.

This time I decided to go for gas and air instead of a sedative as I wanted to drive myself some home as they wife was busy with the kids. It was certainly an experience. At times it was quite painful when the doctor had to ease out a bend of my intestine all the while the nurses where chatting away to me.

I did kind of enjoy seeing what was going on. They have a magnet in the tube so you can see it winding up towards the your belly. Very clever stuff.

The doctor was complaining of a lack of air during the procedure. It seems the air is fired out the end of the tube and used to open up the intestine. So they replaced a button mid op on his control stick. Thankfully this seems to make things a bit easier and less painful.

When the doctor got to my Ileocecal valve it seemed there was some ucleration. The doctor was also concerned that it seems quite small. There was scarring around there valve from when I had been ill previously.

The doctor recommend I get this dilated. They discussed doing it there an then which would have involved sticking a balloon in there and pumping it up.

I am glad they elected to not do the procedure immediately. Even if it means another colonoscopy. Apparently this is the area most Cronhs suffers encounter problems and is the section of stomach which is often removed with surgery.

I spoke to one of the nurses who has looked after me for year now who explained dilating the vavle might not be the best course of action. I have been feeling well recently. Do not suffer pain. Can eat pretty much what I want (with the exception of yeast). See will speak with my consultant and let me know the recommendation.

In a couple of weeks I am moving to Australia. So will see what living with Crohns is like over there. Hopefully Medicare treats me well and won't cost a bomb.

Crohnology

I was recently recommended a website called Crohnology by a total stranger who I met at professional related meet up.

We were asked to share a fact about ourselves and mine was that I had Crohns and that I ran a blog about my experiences. I do not normally share this kind of information, but the ethos was to share something unusual, to open up to each other to establish a better working relationship.

During a break one of the attendees was really keen to ask if I had seen Crohnology  I am really glad he recommend the site and I have since signed up.

The concept uses crowd sharing of experiences to build data about what medication, food, supplements and alternative therapies work best for people.

The results are very interesting. It seems the main cause of a issues for people is alcohol. No beers, no wine, no spirits are among the top five diets.

The list of supplements correlates with my experiences.

The list of medications was a surprise, with medical Medical Cannabis coming out top?!?

Now I find this very strange as I have never heard of Cannabis being used to treat Crohns. As a long term pot smoker I find this hard to believe - more on this in another post.

Imuran (Azathioprine), the medication I find works well for me, is pretty far down the list, but has some good reviews. It seems Imuran is not effective for everyone, people with mild to moderate find it most helpful.

Go check out the data yourself. The is website well worth checking out for anyone interested in Crohns.

Back On The Meds

So it seems life without medication was not for me. I cannot hide my disappointment. I relished being drug free, but I think going back on Azathioprine is for the best.

Over the past year and a half I have been coping well. Feeling good, energy levels okay, holding down a pretty serious job as a highly paid consultant, and fulfilling my duties as a father with a young family.

It seems I was in a cycle where I would be well for a couple of days, then have a bad tummy for the rest of the week. I was coping. But I was never fair away from a flare up. At one point I got a little depressed when I realised that despite my best efforts I could not stabilise my condition for a sustained period.

At the trip to the outpatients today I was told that my latest results of blood and stool tests where okay. It shows good levels of iron, etc., but a reading of 20 for inflammation. Not bad as a normal reading during a flare up is 80, but it shows that Cronhs is still active.

So I agreed to go back on Azathioprine. As much as my heart wants to stay drug free I could not argue. The medication worked well for me for a number of years with no serious side effects – so I have nothing to loose.

A Year Without Drugs

A year has flown by and I am just released that I have been clean of prescription drugs for a year now!

Coming off Azathioprine was a big milestone for me and I am glad to report I am feeling great.

My mantra is to try and stay health and not get to stressed. Hard sometimes when you have a full time job and two kids!

I still do have the occasional naughty smoke and still like a few drinks and a night out. Something I need to keep an eye on.

I did catch the Norovirus a few months back. Luckily knew straight away it wasn't my Crohns. Very different feeling and hit me like a steam train.

Wishing everyone a great health and fun times in 2013!

Wonder Treatments - Too Good To Be True?

Recently I got an email from a family member with a recommendation from a trusted friend for a wonder cure to his Crohns Disease.

He recommended Quina Compound, which cost him £800 gbp for a four week course!


http://en.wikipedia.org/wiki/Cinchona

Looks interesting with a lot of medicinal history, but if this plant is so amazing then surely it would have had its properties proven scientifically. The amount he was charged also raises my suspicions.

Being open to alternative medicines I went to a Chinese doctor years back. From the description of Quina on Wikipedia, I believe I was prescribed something similar.

Basically I was given a bag of bark and other pieces to boil in water, strain and then drink. I must say, it was the most disgusting thing I have ever tasted, and I did not see any notable benefit. The accompanying acupuncture was a lot nicer and I actually found it quite relaxing. That was until they wheeled out the electrocution device and wired it up to pins in the my nipples. Needless to say, I knocked that on the head and saved the £50 gbp for something else.


I have also noticed a lot of spam comments over the years on this blog with random links to professional looking sites setting everything from Yoga swings to Aloe extracts.



Saying all this, I realise I am contracting myself as I recommend the intolerance York Test, which has a flashy website and costs a lot.

The basic message is beware. By all means try different remedies, each person is different, just beware of costly scams (especially if you cannot afford it).

Coming off of Azathioprine

It has been a long while since I have posted anything. Which is good news, as I have been rather well.

I have recently stopped talking Azathioprine, which is a big milestone in my journey with Crohns.

Something to celebrate after 14 years of taking the medication daily!

The last time I came off the medication it did not take me long to be back into remission. This time I feel a lot healthier and have learn my lessons from last time.

Life style choice is the biggest factor. Last time I was young and would be out most weekends smoking and drinking. Now that I am a married man and parent I find it a lot easier to remain healthy - with the odd blow out now and again.

I also think stress plays a part.. So I try to remain chilled and not get stressy about minor things.

So my top tips for staying healthy are

• Stop smoking
• Drink sensibly
• Maintain a healthy lifestyle
• Try not to get stressed

Fingers crossed.. and I will not have a lot to blog about in the coming years.. But I will post anything I think might be useful.

Five steps to combat Crohns

Outlined are the steps I have most founds useful coping with my Crohns Disease.

1. Stop Smoking
2. Stay away from yeast (or whatever you may be intolerant to)
   
3. Eat Well
4. Exercise
5. Listen to your body and rest up when required
   

I went out this weekend and broke rule number one. First time in a long while I had smoked. The next day I really suffered and it served as a good reminder.

Not smoking is most certainly the biggest factor in my recovery. I will not be going back to that habit, and I urge anyone with Crohns to stay away from the smokes.

Yeast intolerance migth only apply to me, but thought it worth mentioning. A lot of people with Crohns seem to suffer some form of intolerance. Try to monitor what causes to feel bad. Perhaps do an intollerance test.

I would recommend an exclusion diet to find out the route cause of your Crohns if you follow these steps you still do not feel well.

Stay Well!

Super Juice

A good friend of mine has recently launched a super juice ingredient called Gojiflax. He thinks it will help people with bad Crohns and would love for people to give him some feed back.

I haven't tried any myself yet, but it looks promising and I think this kind of thing could really help settle down a bad bout.

Let me know if anyone tries it or has any other tips for Chrohns combat.

Baking Business

As mentioned in the previous post, I have found certain yeast products to be okay. Namely those without fast acting Yeast.

Check out this interesting Guardian article and comments on the subject.

Over the past couple of weeks I have been baking my own bread with dried yeast and find that this is okay. Although it is proving to be a messy job and my baking skills need a little refinement.

The plan is to get a bread maker in the not to distance future. No mess, a good loaf, and timed to freshly bake bread for me and the mrs in the mornings. Quality! Hopefully it won't end up as another gadget stuff under the cupboard.

Update

Apologies for not keeping this blog as up to date as I should..

The reason excuse is that I have simply been quite well.. Which is great news!

I still get the odd bad day. As mentioned in previous posts I have come to find that yeast and smoking really effects my condition. Staying off the smokes helps the most and trying not to consume to much yeast keeps me tip top.

Juice diet is out the window.. Although the juicer is still kool and will continue to use it sporadically.

Recently I have notices certain yeast products are worse for me. I think this is because they contain high levels of fast acting yeast. Certain breads and real ales seem to be okay for me.


Hence I have recently staying baking my own bread and continue to buy Paul Ranklin's great yeast free goods.

I will endeavor to do better with the updates in 2010 (perhaps that should be my belated resolution).

Internet Research

It is amazing how little people research conditions they may have. I include myself in this generalization. I would be an authority on Crohns if I were to spend the same amount of time researching the Crohns as I do looking at motors on the internet.

So this lunch I decided to have a look and see whats out there (weather pretty poor outside). At the same time I have updated my links section of the blog, after BlogSpot decided to wipe them all.

The NACC seems to have some good stuff. This Crohns FAQ article was very insightful. Must do some more reasearch on this Infliximab drug, as I don't want to be on Azathioprine forever.

Another interesting site was Medical News Today. This seems like a good place to go for up to date research and developments news. I've added their RSS feed to my reader, and will keep an eye out for interesting bits. There was one article on the discovery of a Crohns Gene which caught my eye. Quote below;

"The protein encoded by the Crohn's disease susceptibility gene NLRP3, cryopyrin, is an intracellular bacteria sensor that plays a key role in initiating immune response," - sounds like there are some good in roads being made into the cause of Crohns.

Anyways.. I will report back if I find any other interesting peices.

Juice Diet

Was feeling rough again the other day.. Not sure if it was some kind of tummy bug. Knew I needed to watch my diet and give myself some recovery time. Been feeling crap a lot recently!

I recalled hearing about a guy was cured from his Crohns by switching to a juice diet. He was so pleased with the results he set up a juicer website call UKJuicers.


So I decided to get myself a juicer and give it a go. In the end I went for a Philips number from Amazon. I bought all the fancy ingredients for the recommended potions; bio acidophilus, spirilla, and wheatgrass. It wasn't cheap, but it should last a while.

Near enough everyday I have been having juice for breakfast and I feel great. My Crohns has been really good, despite smoking recently ( I am a mug and have stopped now). Not only does my body seem to agree with the juice, it is also pretty healthy. My muffin top (paunch) seems to be shrinking slightly now I drink this super juicer and walk to work.

Recovery Time

Had what must have been food poising a few weeks back. Hit me for six and it took at least a week to recovery.

After a few days the symptoms where just like a bad bout of Crohns. This really worried me as I had been doing so well for ages.

I had faith and just tried to look after myself as best I could. Stayed off work for a few days, then worked from home, ate good food, stayed away from booze (not that i felt like it), and eventually I got back to normal.

Say It With Flowers

Another outpatients appointment loomed and I realised the same doctor had been looking after me for over 13 years!

My Doctor has been so great over this period. She has always been really concerned for my well being (as any good doctor should be) and interested in how I am coping with Crohns in my life. It is always a pleasure to tell her any good news I may have, such as getting a new job, moving house, and any other personal achievements.

I expect she has enjoyed seeing me mature and overcome a lot of the difficulties growing up with Crohns through at me.

So for this appointment I decided to buy her a big bunch of Lillies to say thank you.



It felt good giving her some recognition, although I was reminded by the excitable receptionist that they and the nurses play there part too. Perhaps I will get them a pot plant next time ;)

A Gentle Reminder

Despite feeling much better of late I still suffer symptoms which remind me of my condition. I have given up on the notion that the disease will just disappear, it is something I will have for the rest of my life.

After many months of feeling fine I had a fortnightly stint where bloody appearing in the toilet bowl daily. This can be quite a distressing site, but something I am now becoming accustom to.

(Note: I did not take this picture, i would normally have half this amount at worse)

I can recall the first time it happen, and the shock I felt seeing bright red crimson on the toilet paper... Initially you panic a little, thinking "f**k internal bleeding".

I've mentioned it before to my specialist doctor, who I really respect and trust, who sees me for my outpatient appointments, and she says it is perfectly normal.

I sometimes wonder how many people with the condition suffer from this and frequency. Also what is actually happening inside me. I tried to hunt down an old Chrohns forum which i once used to ask thses questions, but can't seem to find it via Google anymore. I'll keep looking.

It's Friday... Wooo Hooo

Food Intolerance

I have found over the past few years that food intolerance plays a big part in my condition. So it was with interest that I read this article on the Daily Mails website.

It is great to hear that people are combating the symptoms of Chrohns with no need for drugs. I know the dietary exclusion method is pretty hardcode, but it is a price worth paying if it works.



Since quiting smoking my condition has improved dramatically and I have even begun starting to introduce yeast back into my diet in small quantities. Although I still have the odd problem with serves as a reminder of my condition and has encouraged me to continue with this blog. More about that in a future post...

Like a Phoenix from the ashes

....well not quite

BUT THE BLOG IS RE-BORN!

After some encouragement from a friend I have decided to start up this blog again. As I have also discovered over the years Crohns always seems to rear it's ugly head just when you think you are getting better.

It's been a year now and I have made some good improvements, but I still have issues to deal with most days and would like to continue to share my experiences and thoughts with anyone who cares to read this little blog.

Don't expect a lot though.. Perhaps a short post each month at best...

Thanks for recommendation

Thanks to the anonymous comment poster who recommended Breaking The Vicious Cycle. I had heard of this ladies book before, but recently deleted it from my Amazon wish list. After reading the website I decided that this book sounds promising, so i will get it ordered and report back.

A recomendation of my own would be the Gut Reaction journal. I finally read it in the bath this evening, after it sat gathering dust under my bed for two months. Well worth signing up for, entertaining read, and some good advice. The wacky professor's letter and answer page is worth subscription alone - classic book plugs.

Still haven't fogiven Blogger for screwing up mu blog! BASTARDS!

They Killed my Blog!

Thanks to Blogger my blog has been bolloxed for a while now. After forcing an upgrade to the new version of their software they managed to screwed the process up and delete my template.

A new plank template has been put in place for now. I tried emailing support to see if they would reinstate my design, but they claim to have no back ups. But do not fear! Using my cunning I got a backup of the HTML source code from Google cache (what a geek!).. I then managed to loose the file (not so cunning)

Note to self: Take back up of new blog template, and remember where you saved it

Cure for Crohns?

An article in the Scotsman claims Prof John Hermon-Taylor has found a vaccine for Crohns.

Make of it what you will. I am still unsure about MAP being the cause of my condition, but I still limit my dairy intake. Not sure about one of the comments at the end of the article.

"My campaign tells everyone to boil their drinking waters as well, even if it is bottled. Water filtration does NOT kill MAP."