Sunday, 27 January 2013

8. Taking responsibility

Firstly I'd like to thank everyone who is reading the blog. Through the wonders of the analytical tools provided by Google I can see that so far I have approx. 25 regular readers, some of whom are probably my family and friends and others who are further afield (one nice lady contacted me from Texas, USA to wish me well for the surgery). I'd love to hear any suggestions/comments about the content so please do get in touch via the Contact Dave page. OK, housekeeping aside I'll get onto today's exciting topic  - taking responsibility.

Who cares?

In this context of medical problems, 'care' is expected from two different groups of people. In management speak these would probably be known as 'stakeholders':
  • Those who have an emotional stake holding in my (one's) illness i.e. family and friends. They care because they want to protect me (one). 
  • Those who are stakeholders because it is their job i.e. the medical profession. They have a 'care of duty'.
Why am I saying this? Well, I have to be conscious of this distinction in the definition of 'care'. More specifically, in the same way that I cannot expect 'medical care' from family and friends, I cannot expect the medical profession to 'care' like my family and friends do.

"Dave, where are you going with this?", I hear you asking.

How to get a medic to really 'care'

Think back to your school days; the teacher always favoured those who showed an interest in learning. OK they had a care of duty for all pupils, even trouble-makers like me, but they seemed to have an emotional strand to their caring for the aforementioned (we called these pupils 'swots' or 'suck-ups').

Well medics and teachers are alike in this respect. If doctors were machines, they'd invest an equal amount of effort in treating every patient; but doctors are not machines. Showing that you are really interested in battling/defeating/managing your illness is the most important thing you can convey to your consultant. Couple this with being polite and respectful to them and you will establish your position as one of their more favourable patients. An emotional (or at least pseudo-emotional) attachment can develop between you and the doc; they will really want to see you get better, and this maximises your chances of getting the best possible 'care'. So push your pride aside and become a swot.

My tips for getting the best out of your medics when you have a chronic illness (most also apply to short term problems too):

  • Never forget that you need your medics. They hold the keys to a vast collection of resources.
  • Always be polite and respectful to your medics. I find that thanking them for their time at the start and end of each appointment goes a long way to achieving this.
  • Remember that (in all likelihood) your doctor doesn't suffer from your illness. Only you know what it is like living with your condition and you cannot expect the doctor, however well trained and experienced, to fully understand what it's like. You can only hope to convey things to them as best you can, and on that note...
  • Keep a detailed diary of your symptoms. If you do then you will be 'top-of-the-class' since not many people do, but your doc will appreciate it. This can be anything from writing down a few words each day to, in my case, recording lots of data about my bowel movements and medication doses. You will forget what has happened since your last consultation and keeping a log is the only way to track the facts. If you don't then you will rely on your opinion of how you've been keeping and depending on your personality, you will either forget the really bad times (optimist) or dwell on them (pessimist). Your doctor needs facts, not opinions.
  • Last but not least, try to learn about your condition. Do some research and gain a better understanding of what you are dealing with. Understand what treatment strategies are available and try to anticipate what might happen in future. Not only will your doc appreciate this but you will be better prepared for any eventualities.

Although the above points may look like you're pandering to the medic's wants, they are really geared towards taking responsibility for your condition. You will empower yourself to face it head-on. You will be able to have meaningful discussions with your consultant and, more importantly, you'll be better placed to think about how you feel about how your treatment is going. Don't just sit back and expect someone else, no matter how well trained they may be, to take charge of your body; it's not their job. Yes, they need to provide you with their advice but ultimately you will have to make decisions, and the more responsibility you take, the more empowered you'll be to take them.

"You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you." - Brian Tracy

Friday, 25 January 2013

7. The countdown begins

Did you notice the big black countdown timer to the right hand side of the blog? So my date for the operation has been set; 20th Feb 2013. I am quite happy about this since it is a month within the 12 week NHS target and it affords me three months of recovery time before I go on a wee holiday to Arran, one of my favourite Scottish islands.

Some gentle 'nudging'

I was beginning to wonder if I was ever going to receive a letter to confirm my op date; time seems to slow down when you want something to happen quickly! So I decided to phone the appointments department for general surgery at the hospital. After about 7 or 8 minutes and three call redirects I got through to the right person and they confirmed I was on the waiting list but no date set yet. At this point I was thinking that I might have been wasting my time, that I'd just have to wait for the 'machine' to go through its process. But I was pleasantly surprised when the girl on the other end of the line said she was personally going to chase this up and call me back to let me know when she'd spoken to the surgeon to confirm when he could perform my operation. "So will you call me back today?" I asked. "I'll try to speak to the surgeon today, but if I can't it might be a couple of days" she replied. I thanked her, but I have to say I didn't necessarily think she would deliver on her promise so I politely asked her name -  I find this sometimes helps to speed things along when dealing with medical administrative staff :-).

What I wasn't prepared for was to receive a return call from the kind young lady within 10 minutes! She confirmed to me that the procedure would be on 20th Feb, that I'd need to attend a pre-admissions appointment on 11th Feb and that I should expect to be in hospital for 5-7 days. She'd prepare a letter to confirm that would be in the post in due course. The relief was amazing, suddenly I wasn't wondering if I'd been forgotten about; the date was set and I could properly begin my planning. It just shows, a little nudge in the right direction can get things moving along.

So what's next?

Well I need to meet again with the stoma nurse to discuss various things including identifying the preferred location for my stoma. I have been seeking advice from some fellow ostomates recently via the Crohns forums and gotten some tips such as making sure it is far enough away from my belly button that the sticky part of the ostomy bag won't overlap (this would be a point where leakage and subsequent skin irritation could occur). I am also keen to make sure there is a proper 'spout' shape to it which also minimises the chances of skin irritation. I have bit of a decision regarding the clearance from my belt line; I'd like it to be above this but unfortunately not all trousers are at the same height. I've noticed that my more formal trousers sit higher than my jeans, so I think I'll want it sitting above my jeans belt line, but probably settle for wearing braces and a larger waist size for my more formal trousers.

After this will be a pre-admissions appointment on 11th Feb, which I think is a consultation to establish that I am fit enough to have surgery (I bloody well hope I am!). I don't see the point of this right now but I'm sure all will become clear.

Then I'll be admitted to hospital on 19th Feb and it will be no turning back. No doubt I will have to drink a gallon of 'Movi-prep' laxative solution to clear me out before the op. I have had 4 colonoscopies (camera up the rear end) but despite my level of experience, the Movi-prep stage never gets any better - actually it gets worse since I know just what it means (running to the toilet every 5-10 mins for hours on end whilst the gut literally washes clean). But it will be worth it.

I believe I'll be on the operating table on 20th Feb for something like 6-8 hours. It would normally take about 3 or 4 except that I will be having my large bowel removed 'laproscopically' (AKA by 'keyhole' surgery). This takes a bit longer but leaves only a couple of small scars rather than a 6-8 inch scar down the middle of my belly.

All in all I'm looking forward to having had the op, though I am a little apprehensive about the procedure itself. As I will be in hospital for 5-7 days I have been thinking about what I might do during this time (apart from writing a certain blog!). I have decided that I don't watch enough films, so I'll be loading some onto my wee tablet computer.

With a bit of luck I will have a reasonably quick recovery; who knows, I might even be able to play some golf on my holiday to Arran.

"I can't change the direction of the wind, but I can adjust my sails to get to my destination" - Jimmy Dean.

Tuesday, 15 January 2013

6. Better the devil you know

A couple of days ago I received a standard letter from the department of surgery saying that my operation would be scheduled for a maximum of 12 weeks from the date I agreed to go ahead. By my reckoning that means it must be on or before Fri 15th March 2013. Over the festive holiday period I had decided that it was sooner-the-better for me and therefore I have also indicated that I would be willing to go on the cancellations register. This could speed up the process a bit.

There seems to be a lot of time for me to think about things at the moment. I go between wanting to learn everything there is to know about colorectal surgery and just wanting to forget about it; for the operation to be over and done with. My inquisitive mind tends to dominate though, and I have found myself scouring the internet for information and I'm going to share some of my findings here.

Better the devil you know

Here is a quote from a fellow ostomate's blog, which I stumbled across the other day:

"Ostomies are a bitch, but they're a devil you we understand."

This sums up the ileostomy surgery for me. As I've explained before there is a high degree of certainty that I can achieve a manageable solution to my Crohn's. Yes, I will have a new and life-long "problem" to deal with, but one for which there are known solutions to any complications which may occur. This cannot be said for Crohn's disease itself. It seems like a good time to be thinking about the complications that can occur. I figure that by understanding the risks of complications I might be able to take positive actions to reduce the chances of them occurring.

By far the most concerning (and most common) is the 'paristomal hernia', which occurs in up to 50% of ostomates (although for ileostomy the rate is lower at 20-30%). Whereas the intestine is normally concealed behind the abdominal muscles, it must be brought through them and the skin in order to form the stoma. This creates a potential point of weakness in the abdominal muscle. A hernia can occur if the muscle collapses, allowing more than just the end of the small intestine through the hole in it. The picture below explains it better than I just have, basically the hole in the muscle should only allow through the bit of intestine leading to the stoma.

Paristomal hernia (taken from reference 1)
Whilst there seem to be no guarantees against parastomal hernia, the advice is to maintain strong abdominal muscles post-surgery. This includes various limitations such as no lifting for 3 months, but also doing exercises including sit-ups etc. Maybe this ileostomy is just the stimulant I need to get that ribbed "six-pack" look I've been longing for all these years!

Regarding other complications, one study (Reference 2) into 180 ileostomy patients showed the following rates:
  • Skin excoriation (due to stool irritation) 21.1 %
  • Stoma retraction (where the stoma recedes back inside the body) 6.6 %
  • Prolapse (opposite of retraction) 4.4 %
  • Stenosis (narrowing)  4.4%
What else can I expect?

Complications aside I've been trying to understand what else will be involved in this process. I think I've  figured out a rough plan:

  • Meet stoma nurse to decide stoma location and discuss other pre-op requirements
  • Confirm surgery date
  • Bowel preparation (lots of laxatives for 2 days)
  • Admitted to hospital
  • 6-8 hours on the operating table (thankfully I'll be asleep!)
  • 5 days in hospital
  • Further 5 weeks off work to recover
I'm not sure when my next blog post will be -  I'm not really convinced I'll have anything interesting to write before surgery, but many thanks for your continuing support, it really does make this journey easier to embark upon.

“Life is 10% what happens to us and 90% how we react to it.” - Dennis P. Kimbro


1. "Parastomal hernia: incidence,prevention and treatment strategies" Mary Jo Thompson,
British Journal of Nursing, 2008 (STOMA CARE SUPPLEMENT), Vol 17, No 2

2. "Frequency of complications of ileostomy: experience of 180 cases at Chandka Medical College Hospital Larkana."  Rawal Med J Jan ;35(2):198-200.

Sunday, 13 January 2013

5. The colorectal surgeon song

Just a very short post tonight, it's funny what manner of weird and wonderful websites and articles you come across when researching matters of the digestive system. Here's a video I stumbled across when browsing the Crohn's forum.

Made me chuckle, maybe you will too.

Saturday, 12 January 2013

4. Practice makes perfect

Today I'm going to try to tell you about my experiences over the last couple of days, specifically in relation to meeting with a 'stoma nurse' and also in practicing wearing an ostomy appliance (bag).  If you're lucky (well, that depends on your view I suppose) I may just throw in some mild nudity at the end! But be prepared, it may not be to your taste...

The Stoma Nurse

Two days ago I had my first meeting with a stoma nurse. These highly skilled and compassionate professionals provide a vital support service for ostomates. It will be the beginning of a long relationship since I will draw upon their help and advice from this critical period pre-surgery right through to the day I pop my clogs. (By the way, 'ostomate' is the term given to a person who has a stoma and needs to wear an ostomy bag).

After a brief exchange of pleasantries it was straight down to business. "So, you have Crohn's?" asked the nurse and I duly confirmed. "And you're due to have a pan-proctocolectomy with ileostomy, is that what you understand is to happen?" Again I confirmed. I think he then asked me if I was aware that this would be permanent and that it would mean some life-long changes to my lifestyle. At all times, despite the pretty grave subject matter, David (the nurse) was speaking with compassion and understanding and I felt very at ease. I was then presented with a grey box called the Hospital to Home Trainer Pack containing several booklets giving general advice on various things and, most notably, some sample ostomy bags. It also had a red foam disk about an inch thick and the diameter of a 2p piece - this was a false stoma (Sam my wife later called this a 'Foam-a', which made me chuckle). The objective - to stick this in place where I think I might want the real thing to be located, wear an ostomy bag for a day or two and see how it felt.

I have to admit that despite my best efforts to remain positive, a wave of emotion passed through me when I saw the ostomy bags. It was suddenly very real for me and for a second or two I wanted to run away and hide. This, however, quickly passed and I was again focussing on the fact that these appliances will soon be helping me to live with a much better quality of life. I spent around 30 minutes in total with David and we discussed several things, including that we'd need to meet again at least once before surgery to agree on a site to form the stoma. I left feeling really very good, even excited.

My first two days with an ostomy bag

Those who know me will know that I tend to jump in with both feet and tackle problems head-on if I can. The stoma nurse had advised that I try wearing the sample ostomy bag over the weekend, when I'd be home and comfortable. But I thought "To hell with it, I wan't to know what this is really going to be like". So it was Thursday evening and I pulled off the adhesive backing on the Foam-a and stuck it where I thought it made sense to locate it. Next came the application of a bag. It is critical that the waste expelled from my soon-to-be stoma does not get in contact with the skin on my abdomen. The digestive enzymes which normally stay within the digestive tract will escape, gladly trying to digest my skin if this happens. Therefore it is imperative that a good adhesive seal is created to form a barrier around the stoma. There is a large round sticky disk (known as the 'wafer' or 'flange') on the back of an ostomy bag which serves this purpose if correctly applied. Since no two stomas are the same size or shape it is necessary to be able to cut (with scissors) the hole in this disk to fit snugly around the little guy. Thankfully mine were pre-cut to the false stoma since I didn't have a small pair of scissors.

Removal of the adhesive backing on the wafer revealed an extremely tacky substance which easily bonded to the skin and it felt very secure. I should add that I had pre-filled it with some water to further increase the realism of the test. I gingerly showed my wife the appliance and she was very supportive, which made me feel nice. I had donned my pyjama trousers by this point and the belt line was about 1" below the false stoma, therefore the majority of the bag was below the belt line, tucked inside.

During the night I woke up and realised that part of the adhesive wafer had detached from my skin and I thought that maybe it would get worse and worse and begin to leak, but I was wrong. A prod around it combined with my body heat seemed to firmly re-attach the loose bit again. I found this quite reassuring.

Friday would be my real test day and I tried to put the appliance through its paces by carrying out various tasks. I am pleased to say that I completed the following with absolutely no worries of leaks or feelings of embarrassment in wearing the thing:

  • Showered
  • 2 mile walk to work
  • A day in the office
  • Lunch time - went clothes shopping and tried on various garments
  • Tried on and bought some shoes
  • 2 mile walk home
  • Watched 'The life of Pi' in 3D at the cinema (let me tell you that, ironically, I nearly shit myself when tiger jumped out for the first time after the shipwreck!)
  • Slept a 2nd night (including on my front at times)
Whilst it seems like these are pretty menial tasks, I fell very re-assured that the test went smoothly. I had learnt, first hand, that there's no reason to be scared of living with an ostomy bag and, not only are they quite comfortable to wear, they're easy to conceal beneath normal clothing.

Now, I promised some partial nudity but before I get to that here's a little quote I picked up from a fellow Crohn's sufferer:

"The colon seems an unlikely candidate for dramatic effect, but now and then it serves that purpose well" - The Associated Press Guide to Punctuation

'til next time, folks...

Thursday, 10 January 2013

3. Surgery! That's a bit drastic, isn't it?

This is a question which I have been asked before and some friends have expressed (quite naturally) some concern over whether I am doing the right thing to opt for the ileostomy. This blog post is intended to get across my thoughts on it, and to construct the argument for surgery in my case.

In many respects I have been quite lucky compared to many others with Crohn's. My symptoms over the years have been relatively mild when I consider some of those I have heard of people having to deal with. For example, a common problem is for the development of 'fistulae'. The definition of a fistula is an abnormal connection or passageway between two organs or vessels that normally do not connect. In a Crohn's sufferer this can mean that the intestine becomes connected to the neighbouring anatomy - I recently read of a poor young lady who had developed a fistula connecting her bowel and one of her fallopian tubes. Other fistulae can develop where the gut "burrows" it's way to the surface of the skin, perhaps to the abdomen or around the anus. This can create sites of waste leakage and severe infection can result. There are also several other common problems which I have not (yet) suffered from with my Crohn's. Whilst I, obviously, am grateful not to have suffered such problems, it becomes a little dangerous for me because I often consider myself not to be as ill as other sufferers. I know that I naturally tend to convey this impression to family and friends. I also know that this is partly because I don't want them to worry unduly about me.

Of course, I must not forget that I have been suffering from many other symptoms of my Crohn's for 7 years now, in varying degrees mainly depending on how active the disease is. Jeez, if I wasn't ill I wouldn't be going to the hospital to speak to my consultant every few weeks! I must also not forget that I have actually had other significant medical problems, I'll talk about them now.

Major complications

About 5 years ago, when I was in the last 3 weeks of the final semester during my MSc at Edinburgh University, I began to feel quite dizzy and nauseous. I decided I wanted to be at home and hopped in a taxi. About 500 yards from home I knew I needed to throw up and ordered the taxi to stop - I duly did the "techni-colour yawn" at the side of the road, counted to ten and got back in the taxi for the remaining short journey. I can't remember if I actually paid the taxi driver, but if I didn't perhaps he was just grateful not to have had to clean up my mess from the back of his cab! When I had been home for five minutes I realised that I had a fluttering in my chest - I was pretty sure I had an irregular heart beat, it felt like a butterfly panicking to escape from my chest. To cut the story short, I ended up in hospital for two days on a drip to re-establish the correct rhythm. I had suffered an episode of 'atrial fibrillation' (AF for short). This would be the first of around five episodes to date, the latest being June 2012 when it was quite serious and I was 'cardio-verted' i.e. shocked back into rhythm with a defibrillator at the A&E department.

The other major event in my medical past came in August 2011. One evening I was suffering bad chest pain and my wife and I called NHS 24. They were sure I wasn't having a heart attack, but asked me if I could be taken into the Royal Infirmary in Edinburgh to see a doctor that night. My wife duly obliged and after the doctor saw just how much pain I was in I was taken straight through to A&E. It turned out that the pain I was suffering was probably a combination of mild pneumonia and the fact that two small blood clots had formed in one of the main arteries to my lung. The latter is known as a 'pulmonary embolism', and the doctors seemed to be really bothered about this...I later found out that these 'PEs' are a pretty serious business, and can very quickly become life threatening. Thankfully mine were small and did not cause a severe blockage in the artery. I would complete a 6 month treatment of Warfarin to thin my blood.

The reason I'm telling you about these two medical conditions is because the senior medics I have dealt with all say the same thing - my Crohn's, tendency to AF and my PE episode are all inter-related. In that sense I can think of the AF and PE to be "caused" by the fact I have chronic inflammatory processes going on all the time in my body, i.e. my Crohn's. These events are a major cause for concern for my GI consultant. He is not only trying to help me with dealing with the "direct" Crohn's symptoms, but also trying to do his best to prevent episodes of AF and PEs. We have tried all the approved (and some unapproved) medications in the arsenal against IBD but none of them have worked. My inflammatory markers remain sky high, even when I'm feeling well on steroids (to put numbers on it, for 'fecal calprotectin' - a test based on a stool sample to indicate bowel inflammation -  50 is the upper limit of normal and I have been at 600-700 for the past 3 years). Simply put, until this number reduces I am living with an increased risk of further episodes of these other, serious conditions.

The hard truth of it:

I have three options:

1). Try to reduce my inflammatory markers with unproven drugs
2). Try to reduce my inflammatory markers by a combination of unproven drugs and/or "alternative medicine" (e.g. homoeopathy, applied kinesiology, meditation, acupuncture -  the list goes on...)
3). Remove my bowel and get an ileostomy.

For me the decision to go for the ileostomy is quite simple, opting for options 1 or 2 would mean gambling unnecessarily with AF and a potential PE. Perhaps some melodrama is justified here, I could be gambling with my life.

A little bit on alternative medicine:

I have absolutely nothing against it and I am sure that there are many people who derive significant benefits, and I'm not just talking about treatment of Crohn's here. I was just talking to my sister who has used the homoeopathic treatment Arnica during three caesarian sections, citing her speedy recoveries. The big problem for me, right now, is that very rarely are alternative methods backed up by hard proof of efficacy. From my experience, anecdotal evidence is often abundant in the argument for alternative methods but very rarely against it. This is a result of people finding (or believing to have found) things which help them. Quite naturally they want the world to know of their success, and they want others in similar circumstances to benefit too. This is fantastic and must continue.  However it does skew the perception of efficacy towards being beneficial; in truth you don't actually know how likely it is that trying a particular alternative method will work. Are the odds 50%, 10%, 1%....0.1%, 0.01%, maybe less? I believe that people facing difficult medical decisions, like me, have to seriously consider what an undertaking it is to "go down the alternative route". Ask yourself, "do I have time to try something alternative?".

For me, as I've already illustrated, it's about a ticking time-bomb. I simply don't have the time to explore unproven methods. I have been offered a procedure which is proven to have very high success rates in significantly reducing or eliminating the symptoms of a Crohn's colitis sufferer. There is a very good chance of a permanent remission and the big "carrot at the end of the stick" is that I can reduce my risk profile with respect to AF and further PEs.

Wow, this has become quite a long post and I hope you're not bored to tears. I'm going to wrap it up now but, as always, thank-you for your support and for helping me through this process.

"We're all in the gutter, but some of us are looking at the stars" - Oscar Wilde

Tuesday, 8 January 2013

2. What's this ileostomy all about then?

I'd like to share a few things about the upcoming Ileostomy surgery which I am going to be undergoing within the next few weeks. As you may know already I suffer from Crohn's disease and I have come to the "end of the road" with the medications offered to us Crohnies. I'm at the stage where I'm actually looking forward to getting the surgery because there's a good chance of a permanent Crohn's remission for me. I expect my quality of life to be greatly improved post-op, fingers crossed ;-)

There are going to be some reasonably frank explanations of matters of the digestive system within this blog post so if you are at all squeamish then be prepared for this if you choose to read on.

The objective of my Ileostomy is to no longer rely on the part of my digestive system affected by inflammation due to Crohn's disease, in order for my digestive system to function. This should drastically reduce or eliminate the symptoms I have come to call 'normal'. For me, Crohn's affects around 80% of my large intestine (known as my 'colon').

A very short anatomy lesson:

Disclaimer: everything written in this blog constitutes my personal opinions and current understanding of the many facets of living and dealing with inflammatory bowel disease. This is in no way intended to constitute medical fact, opinion or advice and it should in no way be taken as such!

The small intestine (or small bowel) is the part of the digestive tract which follows on from the stomach. It's main function is to absorb nutrients and to further digest food which passes from the stomach. It is a fascinatingly long (about 7m) tube which is crammed into one's abdominal cavity. It terminates at the 'ileum' and passes the residual soft, liquid waste on to the large intestine through the ileo-cecal valve.

The colon (or large intestine, or large bowel) is the last part of the digestive system. It is a tube about 1.5m in length connecting the small intestine to the back passage to allow waste (stool) formation. It functions by removing water from the waste passed on from the small intestine. In a healthy person this water removal provides some hydration to the body along with slowing down the passage of waste meaning that bowel movements need only occur once a day or less.

Back to the business of the Ileostomy:

So, I am going to have an Ileostomy. I'm now going to try to explain what this means. 

More specifically, I am having a 'total proctocolectomy' (removal of the colon, rectum and anus) with a 'terminal ileostomy' (AKA an 'end' ileostomy). 'Terminal' in the sense that instead of my rectum and anus terminating the digestive tract, the Ileum (end of the small bowel) will become the termination point of my gut. The 'Ile' part simply refers to the ileum and the 'ostomy' part means that the surgeon will create a 'stoma' from the ileum. I hope you are still with me here...After having undergone the proctocolectomy, this will leave the small intestine with nothing to attach to and therefore, for a short time on the operating table, it will be just a tube with an open end. Obviously something has to be done to ensure safe passage of food waste. My stoma will be created by cutting a hole in my abdomen and passing the ileum through the abdominal wall to the outside world for all to see. This will allow waste to pass out of my abdomen rather than out my bum hole. The stoma is formed by folding the ileum back on itself, rather like turning down the collar on a turtle-neck jumper and stitching it to the skin on the abdomen about 3 inches to the right of my belly button (see Figure below)

End Ileostomy

For three main reasons this approach to "waste management" is radically different to the normal way of pooping. Firstly, poo will exit from my abdomen. Secondly, I will have no control as to when I pass waste (I will no longer be able to rely on my anal sphincter muscles to control this). Thirdly, because the large intestine won't be around to remove water from the stool it will never form a 'poo' as such. It will always be soft and paste-like. Loverly! 

Day-to-day, what all of this will mean for me is that I will be required to wear a pouch to collect the waste that is expelled through my stoma. I have often read and heard this pouch labelled as 'The Bag' but I don't really like that phrase. It is a bag, but why label it the bag - it's not that special :-). This is the part of the Ileostomy which requires a major lifestyle re-adjustment. I don't want to get too involved with the details at this stage since it would be better to talk about it once I have some experience of ostomy bags post-op, but suffice to say I will be carrying around a glorified poly-bag around with me to catch my poo for the rest of my life. I have made this sound like a big deal - and in a way it is, of course - but I am optimistic that with the support of my family and friends it won't really be a big deal. Hopefully I will be able to adjust to it and have a lifestyle which is no longer blighted by the physical pain and anxieties which are typical to us Crohnies. 

As always, please feel free to post any comments or questions you may have below. And finally, to paraphrase a favourite quote of mine:

"Never pass a toilet...and never trust a fart" - Jack Nicholson, The Bucket List (2007).

Monday, 7 January 2013

1. Welcome to the blog!


I'm Dave and I have had Crohn's disease for 7 years now. I have started this blog for a couple of reasons:

1) To keep my family and friends updated on my condition (not that I don't like speaking to them about it -  it can just get a little tiresome to repeat information. More importantly I always seem to worry that I'm boring them when I talk about it in my dull tones)

2) To provide an account of my upcoming Ileostomy surgery. Maybe this can help someone in future who's going to have to go through life changing stoma surgery.

I hope this blog turns out to be informative and helpful, maybe even witty at times - if even one person finds it to be any of these then maybe that means it's worthwhile. Whilst I am not generally the type of person to go on and on about life's problems, perhaps this is a good way to jot down my experiences and to get things 'out in the open'.


Crohn's disease is an auto-immune disorder affecting something like 150,000 people in the UK. The condition causes inflammation in the gastrointestinal tract causing swelling and pain. This can occur at any location within the tract between the mouth and anus. I, myself, only experience inflammation in my large intestine (the colon) and therefore I have what's known as 'Crohn's colitis'.

There are several symptoms which are typical of Crohn's disease which include (but are not limited to):

  • Chronic diarrhoea
  • Severe abdominal cramps
  • Blood and/or mucus in the stool
  • Fatigue
  • Depression
  • Anxiety
  • Weight loss

I have suffered all of these from time-to-time and it has become normal for me to expect some or all of these symptoms when I'm in a 'flare'.

Crohn's disease is one of two conditions which come under the bracket of Inflammatory Bowel Disease (IBD), the other being Ulcerative Colitis - an entirely different condition which presents very similar symptoms to Crohn's.

More information on Crohn's can be found in this very informative booklet from the Crohn's and Colitis UK.

About me (bear with me here!):

As I said before I have been diagnosed for nearly 7 years now and in that time I have, like most other 'Crohnies' had my fair share of ups and downs.

Pre-diagnosis I was suffering most of the above symptoms and I have to say that at the time my GP was very slow in identifying that I might have IBD. It took something like 2-3 months to get to the point of receiving my appointment to receive a camera up the back passage (a 'colonoscopy'), after which the diagnosis was clear. In the mean time I was having 10-15 liquid bowel movements per day, my weight had plummeted (I was thin to start with), I felt knackered all the time and I was scared. I lived on my own although I had been going out with a lovely young girl named Sam for about 7 months - she was very supportive and (not just for this reason) I promised myself I'd marry her one day, if she'd have me.

Once I had been diagnosed I started taking some medications to attempt to put my Crohn's into remission. It took about 3 months to establish any meaningful control but in the end a good blast of steroids was the order of the day (they make you feel GREAT!) followed by a longer term (3 years or so) treatment of another drug (known as '5-ASA'). During this time I would say that I never got rid of the Crohn's symptoms completely - but life was much much better than when I was flaring. In this time I left my job, went back to University for a year and became a structural engineer in the Oil and Gas industry. This would mean spending around 12 weeks per year on offshore oil rigs listening to and looking at wobbly pipework.

Then, about 3 years ago, my Crohn's took a turn for the worse. My medications didn't seem to be working reliably and I had to re-establish regular contact at the GI clinic. My specialist decided that I needed to try some different drug treatments - and so began  the mother of all experiments to find something (other than the seemingly lovely, but otherwise dreaded steroids) that would re-establish a remission. At this point I could go into great detail about the hierarchy of drugs available to the GI specialist, some of which are very expensive (I'm talking £20-30k per year here), some of which are infused intra-venously and some of which you have to inject into your leg or belly tissue yourself at home. Alas, I'll spare you the details, but I tried them all and after 3 years I find myself at a point where I'm done with drugs. I'm done with the anxiety which comes with having to wait months to decipher whether or not they're going to work.

I am lucky. With this option of undergoing the Ileostomy comes a real chance that I can obtain a permanent remission. Not everyone undergoing this has such an "assurance". This said I must accept the fact that the Crohn's may return affecting me elsewhere in my GI tract in future (fingers crossed though - I am told this is unlikely for me).

I think that's enough for one blog post for now. Join me next time where I may just delve into some of the details of the ostomy surgery...

Thank you for reading my first post as I embark on this journey. And finally, I'd love it if you'd leave any comments you have about the blog or just to contact me about anything really. Just use the option below this post to get in touch.