Guest Writer - Daniel - Part 2

Me (Daniel Newall) and IBD Surgery Blog – Part 2 Surgery and Post Op

Day Before – I rang the number that I was given, and 12 o’clock the time I was given, to check that there was a bed ready for me and was told that I needed to be there for 2 o’clock that afternoon (they mustn’t think other people work!). So, after declining to get the bus which was suggested by the staff member on the phone, my dad came out of work to take me and I arrived on time at five to two. I was then left sat outside the ward for two hours and was then invited to my bed which hadn’t been cleaned yet. 

I then sat there for a further two hours before I was booked in. So as you can imagine I was quite annoyed! I already knew everything that was going to happen as my uncle, who has been some what of a rock for me despite him living in south Wales, has unfortunately had colitis since before I was born and had the same operation twelve years ago. I doubt I could have coped with the disease or the operation without him.

Day 1 - I wasn't that nervous beforehand, but the doctor that put me to sleep had had the same operation as me and even showed me his scars before sending me off - so that was quite encouraging and before I knew it I was off. I awoke in complete confusion and pain, with a nurse trying to explain how to use the morphine pump for pain relief, which I already knew so began pressing and I couldn’t keep my eyes open which she wasn’t happy about. I then went back to sleep and woke in the recovery ward with tubes in almost ever hole I have! 

After a few hours I was asked 4 or 5 times to get out of bed. I refused I was feeling sick and was still in a lot of pain! But eventually I cracked and said okay, after being bribed by the nurse by putting my surgical sock back on, so at least we had a laugh. This was short lived as as I began to attempt to move - I just couldn’t move properly and it took me about 15 minutes to get from lying down to sat in the chair. I was so dizzy and felt so terrible I just asked to get straight back into bed after it had been changed.

In all this confusion I had completely forgot that I now had the bag which needed to be emptied and changed for the first time. I felt so bad that I didn’t pay any attention to it and I didn’t really want to acknowledge the fact that it was there I guess. During the night I woke to find the bag was blown up like a beach ball so that kind of got my attention. During the day I was on the extremely powerful morphine pain killers but the wounds were unbelievably painful and I was on oxygen for most of the day. However a rather attractive nurse removed the catheter I had, so it wasn’t all bad news.

Day 2 – Day 2 just consisted of sleeping. Towards the end of the day all tubes and drains that were in me were taken out; the main drain in my left side hurt the most. I imagine that’s how getting stabbed feels as it was so deep, and left a huge, deep perfectly round hole right in me. After this I knew things were getting better, as I was sat out at the side of the bed and unbelievably even began to walk around, albeit just 5 yards and in immense pain, as I was now only on tablet pain killers. I was also eating and drinking, but just soup and water

Day 3 – I was now walking more - even going to the toilet, as now I had to empty my own bag. Also, after only 3 days, I was moved back on the ward from the recovery room.

Day 4 – Here I was changing my own bag for the first time with the help of the specialist stoma nurse. Also I had 3 other men with me on the ward one fresh out of a different operation (he had had his gallbladder removed). As I had previously had gall stones, and been told I needed the operation he'd had, we exchanged stories. He was on the morphine pump and was acting rather odd as a result - as everyone does. He later told me that I pictured a mad professor tying him a noose in the main doorway and heard a nurse calling him saying it was time. So this cheered me up a lot, along with a meeting with one of the surgical team who had to check the operation was only 4 days ago as he couldn’t believe how fast I was recovering and told me I could go home tomorrow.

Day 5 – Home!

The next week I had the IVC filter removed with a small procedure which involved a doctor going into the jugular vein in my neck and retrieving the filter designed to stop blood clots travelling to my lungs or heart. It worked as he showed me the filter about five minutes later, it contained around nine small clots. I continued blood thinning injections for a week then recommenced the anticoagulation tablets.

Five weeks later as I write this having just re-enrolled at university for the coming year I feel fantastic within my self - I know the colitis has gone. I have spent my time reacquainting myself with a old friend known as the PlayStation 3. The bag is at times really annoying and I don’t yet know the extent of the impact it will have on my life and whether I will have the reversal next year. I just plan to enjoy life again and try to do as much as possible. The operation was a total success; I recovered in a remarkable amount of time and who knows in a year I could be writing another one of these after the reversal.

Guest Writer - Daniel

Me (Daniel Newall) and IBD Surgery Blog – Part 1 Pre Op

So here I am just one week away from my surgery. After two years of struggling and a year of diagnosis there is finally a light at the end of this horrific tunnel. Having had every single drug on offer to try and control the disease nothing has worked and this is the only alternative left. However it’s not that straight forward, I have really made my doctors and consultants earn their money on this one. 

From day one with UC the rare complications that seem to evade others have happened to me from gall stones and pancreatitis to kidney stones, and most recently and most serious, that has even delayed my original surgery pulmonary embolisms (blood clots on the lungs to you and me) each are easily the most painful experiences of my life! So two days before my big op I have to have an IVC filter fitted to prevent anymore colts from travelling to my lungs, brain or heart, which is potentially life threatening. 

The feelings I have now are more of relief and excitement rather than or anxiety and fear, they never really came into it for me. The bag again doesn’t really faze me at this stage I am very accepting of it if it will help me to get my life back. If the bag allows me to go out when I choose, get back to the gym and exercising then I will be very happy. Having been through every procedure that a colitis patient could go through the operation doesn’t really bother me to much (but I’m sure the day before I wont be saying that and wont be getting a wink of sleep). The fear that I do have is that this will not happen and I will still be in pain, still not be able to go out and that it could then be something else.

Growing up in a rugby mad town like Widnes with a Dad who’s played at Wembley all I have ever wanted to do was be involved in rugby either code, having played union for Widnes and representing Merseyside and Lancashire and watching League and the Vikings for over 13 years now, I know now that is almost impossible in terms of playing, however my focus has now switched to coaching something that is very possible and something I am very good at. However year of struggling to make it into university and not participating fully in my course (Sports Coaching Education) is extremely frustrating and is also hampering my studies and stopping me develop and improve as a sports coach. 

Edge Hill University sports staff have been fantastic with me!! Offering me one to one sessions in their own time to help me catch up on things that I'd missed (a luxury that not every student gets). But since mid 2011 there has been no drinking but no hangovers so it’s not to bad. Still not being able to go out and socialise and generally have fun is hugely depressing. An 18 year old lad with his whole life ahead of him and an exciting chapter of it about to begin shouldn’t have to be worrying about disease and hospital visits. What I'd give for the problems of a normal teenager, hangovers, girls all stuff that doesn’t really matter I guess. 

When I was first diagnosed with UC I completely underestimated the disease and how

bad it could get. I found it extremely hard to talk about and didn’t want people knowing about it, however that became almost impossible and as you can tell gradually changed to where I am now the complete opposite and would advise anybody to just come out and tell people it’s so much easier. Telling people made everything a lot easier to be honest, not having to hide things just made it less stressful and who cares what people think anyway nothing I can do about it anyway. Most people don’t judge and just say do what you need and try to help as much as possible. With a fantastic bunch of close friends around me all encouraging me and even been called an inspiration has really kept me going strong. 

Undoubtedly, without the help of my fantastic family taking me to appointments, getting medication and having to live with this disease in their lives (which I feel is something that gets forgotten) I don’t know what I would have done. I don’t think that people without the disease can understand how it makes you feel and the effect that it has on your life. The potential embarrassment, the disgusting feeling which I can only describe and someone trying to ring out your bowel like a wet towel and the urgency is something people don’t understand and I wouldn’t wish it upon anybody.

So that’s that, hopefully in a few weeks I can get back to you with part 2 post op with everything been a success.

Colitis and Surgery Part 1 - When it's Necessary

This information is about the types of surgery that may be needed in the treatment of Ulcerative Colitis (UC). You may also find other Crohn’s and Colitis UK information useful, especially our booklets Ulcerative Colitis and Living with IBD. Most of our publications are available from our website: www.crohnsandcolitis.org.uk

How the digestive system works

To understand the various operations, it can help to get to know the main features of the gastrointestinal (digestive) system and the way it works. As you can see from the diagram below, the gastrointestinal tract, which is also known as the gut, is like a long tube that starts at the mouth and ends at the anus.

The main purpose of the gut is to break down the food we eat so that our body can absorb its nutrients. This begins as we chew and swallow food, and it passes down the oesophagus (gullet) into the stomach where digestive juices break it down further over 2-4 hours.

The stomach then empties the food into the small intestine (also known as the small bowel). Here the food is broken down into even smaller particles and the useful nutrients are absorbed through the wall of the intestine into the blood stream.

The waste products from this process, which include liquid and undigested parts of food, are then pushed into the large intestine or large bowel. The colon – which together with the rectum makes up the large bowel - has four main sections: the ascending colon, the transverse colon, the descending or distal colon, and the sigmoid colon which connects to the rectum.

The colon absorbs some vitamins and minerals and the water from the liquid waste. The left over waste becomes solid faeces (stools). These collect in the rectum and are passed out of the body through the anus in a bowel movement.

How does Ulcerative Colitis affect the gut?
Ulcerative Colitis (UC) causes inflammation and ulceration of the mucosa (inner lining) of the large bowel. Raw areas or ulcers develop on the surface of the lining, and these may bleed and produce pus. The colon is less able to absorb water or hold as much waste and tends to produce more mucus (a natural lubricant). This leads to more frequent and looser bowel actions, experienced as urgency and diarrhoea.

Other common UC symptoms include crampy abdominal pain, blood and mucus in stools, a lack of energy, and weight loss. If you lose a lot of blood you may develop anaemia (a reduced number of red blood cells), which can also make you feel very tired.

Types of Colitis

UC sometimes affects just the rectum, in which case it is called proctitis. It may also involve part or all of the colon, as shown below. UC affecting the rectum and the sigmoid colon is known as proctosigmoiditis. When the descending colon is involved it is called distal colitis, and when it affects most of the colon or the entire colon, extensive or pancolitis (total colitis). Exact symptoms tend to vary with the extent of the disease. For more details see our booklet Ulcerative Colitis.

When is surgery necessary?
About one in four people with UC will require surgery at some time during their illness. Surgery is seldom necessary for people with proctitis, but if you have extensive or total colitis it becomes more likely that you might need to have an operation to remove all or part of your colon. Some of the most common reasons for surgery are outlined below.

Poor response to long term medical treatment
UC is often well treated with drugs, but sometimes medical therapies fail to control the inflammation. If you have repeated flare ups with symptoms such as urgency and diarrhoea that seriously affect your quality of life, you may wish to consider surgery.

Emergency problems
Surgery may also be recommended for people with acute symptoms, for example, severe diarrhoea with bleeding, dehydration and a raised temperature, if they do not respond to intensive medical treatment once admitted to hospital. Rare complications such as acute toxic dilation (distension) of the colon, or a perforated colon also require urgent surgery.

Cancer of the large bowel
UC is not a form of cancer. However, if you have had severe Ulcerative Colitis affecting all or most of the colon and this has lasted for at least 8-10 years, there is a slightly increased risk of bowel cancer, which may require surgery. For more information on this see our leaflet Bowel Cancer and IBD.

Involvement of other organs
Inflammation in other parts of the body, such as the eyes, skin, or joints, can sometimes be associated with extensive or total UC. Rarely, surgery may be suggested if medication fails to control these symptoms.

Coming up in Part 2 - Which are the most common operations?