Guest Writer - Jon

Life after surgery: it is not the end of the world

Hopefully this blog entry shows that surgery can be a good option for some people suffering inflammatory bowel disease (IBD). I write as someone who has suffered badly from ulcerative colitis (UC) and required surgery because of it. I had a colectomy at the end of last year and had an ileal pouch formed. I have been doing pretty well since the surgery. Before my surgery I had been coming across quite a lot of negative information relating to surgery, often from people who didn't need it or didn't have any form of IBD. I wanted to write a blog about how if you need surgery, it can be very helpful and improve your life.  

Of course every operation has risks. I am not saying that everyone should chose surgery over medical treatment. Surgery should be a last option not the first. Always talk to your doctor before making a decision. I want to show that the operation can improve your quality of life. It definitely did for me.   

I will attempt to give a brief idea of what my experience of UC was like before I had surgery. Through 2011 and 2012 I suffered very badly from UC. There were only a couple of months when treatment worked well enough allowing me to lead a normal life. The rest of the time I was either house bound due to an almost constant and often uncontrollable need to go to the toilet or sometimes having to spend time in hospital. I made the tough choice of having my large intestine removed after exhausting all medical treatment that I was prescribed, trying various diets, herbal remedies, supplements and positive thinking (as positive as you can be with UC). Previously I had been very healthy. Before being diagnosed with UC I had been in the process of training for a marathon and was taking the training seriously. About a month before the marathon I started to have problems with my bowels which seemed more than “runner’s trots.” These problems turned out to be UC.

I was very nervous about the operation. It is a big decision to make. It is a strange thing to ask to have an organ removed. It is even harder due to how often you can come across negative comments about it online.

Since having my pouch surgery I have travelled to the Giant’s Causeway in Northern Ireland, I spent two weeks excavating in Jersey (I study archaeology) and I have just returned from six weeks travelling in South America. While in South America I climbed a few mountains, hiked through mountain passes, cycled down mountains, hiked in jungles and went swimming in lakes and rivers. I did not have any major problems with my bowels while away. I was very careful about what I ate and drank. The only problem I experienced was when I needed to take malaria pills and these seemed to cause me to need to get up a few times in the night. I had no problems during the day. As well as travelling I have been going to the gym, swimming, cycling and trying Tai chi. I used to practice yoga a lot but have yet to get back into that properly.

I do go to the toilet more than the average during the day. However I have warning, control and I can hold it in. I do not feel this interrupts my day to day life. I do not keep a log of how many times I go to the toilet but I would say I average about four or five times a day.

I mention all of this to show that the surgery is not the end of the world. It has vastly improved my quality of life. Last year I barely left the house and almost missed seeing my sister get married. However this year a couple of weeks ago in Peru I was able to hike through mountain a pass at 4600 metres above sea level. Last year staircases often proved to be something of a challenge to me.

Deciding on having surgery is not something that should be taken lightly and I do not want to be misinterpreted as encouraging everyone with IBD to have surgery. Obviously not everyone with IBD requires surgery. If you are able to treat your illness with medicine or diet and changes to lifestyle then that is clearly the way to go. Surgery should always be the last option and you should always consult of doctor for the best course of action before you make any decision regarding your health.

However for some people like myself this is not the case. I felt I had exhausted every other option and that I could not keep living the way I was. I was existing not living. When it was first mentioned to me I was very against the idea of surgery. It terrified me. I thought it sounded like medieval medicine. “We don’t understand the problem so we will just cut it out!” This is not the case. Modern medicine and surgery is amazing.

I should warn you that the surgery is not easy and you will not feel better straight away. In fact you might feel worse before you feel better. The surgery was described to me as being similar to being hit by a bus. I was very weak and in pain after the surgery, but this does not last. I had my pouch formed at the end of November 2012. The first few weeks are hard but you notice improvements every day. These may not be major at first but things are going in the right direction and there is improvement. I went to visit friends for New Year’s Eve. I did spend most of the night sitting down and not doing much but I was able to visit people and there was very little pain from my wounds.

You are very aware of your stomach muscles and trying to avoid moving them as this is painful. This can be difficult as a lot of movement often involves these muscles. You find different ways of getting in and out of bed. This pain does not last.     

I know I mention some negatives involved in the surgery, and it is not a magic cure, but it can vastly improve your quality of life once you get over the initial stage. There is always going to be a period of recovery after any surgery. My quality of life is much better than it was before the surgery. I hope that is shown through me mentioning the travelling I have been able to do. Next on my list of things to do is start training for a triathlon…as well as getting back to my masters. 

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.

Colitis and Surgery Part 3 - Risks, Advantages, Stomas and Laparoscopy

An ileostomy showing stoma opening

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.

Stomas

As described above, sometimes in surgery for Ulcerative Colitis the intestine is brought to the surface of the abdomen and an opening is made so that digestive waste products (liquid or faeces) drain into a bag, rather than through the anus. If the part of the intestine brought to the surface is the ileum (the lower end of the small intestine), this procedure, and the end of the intestine connected to the opening, is known as an ileostomy. If the large intestine or colon is brought to the surface and connected in a similar way, it is a colostomy. Both types of opening are also called stomas.

2 piece stoma bag
1 piece bags are available

Most stomas are about the size of a 50p piece and pinkish red in colour. Because the contents of the small bowel are liquid and might irritate the skin, an ileostomy usually has a short spout of tissue, about 2-3cm in length. Depending on the type of stoma bag used, ileostomy bags usually have to be emptied four to six times a day and changed about twice a week. Colostomies pass firmer stools, so colostomy bags are usually emptied slightly less frequently (about one to three times a day), and usually need to be changed each time.

Laparoscopy

Some of the operations outlined above, including pouch surgery, may now be carried out using laparoscopy (minimally invasive surgery). This is also known as ‘keyhole surgery’. Instead of making one large opening in the wall of the abdomen, the surgeon makes four or five small incisions (cuts) each only about 1cm (half an inch) long. Small tubes are passed through these incisions and a harmless gas is pumped in to inflate the abdomen slightly and give the surgeon more space. A laparoscope, a thin tube containing a light and a camera, is used to relay images of the inside of the abdomen to a television monitor in the operating theatre. Small surgical instruments can also be passed through the incisions and guided to the right place using the view from the laparoscope. If a section of the intestine needs to be removed, this can be done through a separate larger incision.

Laparoscopic operations tend to take longer than ‘open’ surgery, but can have a number of advantages, such as:

• less pain after the operation
• smaller scars
• faster recovery for example, being able to eat and drink more quickly after the operation
• reduced risk of a wound infection
• a shorter stay in hospital.

However, laparoscopic surgery may not be available in all centres and may not be appropriate for some procedures, particularly if you have already had abdominal surgery.

Are there risks to surgery?

Ulcerative Colitis is a very individual condition and the risks and benefits of different types of treatment will vary from person to person. Your IBD team should be able to help you weigh up what will be best for you.
Surgery for UC, like all surgery, will carry some general risks, including those linked to having a general anaesthetic. There is also a small risk that some operations may lead to complications such as infections.

Particular operations may have other risks: for example, occasionally an anastomosis (join) or an ileo-anal pouch can develops a leak and will need further surgery. Adhesions (sticky bands of material that form as part of the healing process) can twist the intestine. These usually settle down by themselves, but sometimes need dietary treatment. If you have a pouch there is also a risk that you may develop pouchitis (inflammation of the pouch), which may need treatment with antibiotics. Your surgical team will be able to tell you more about any possible complications, how likely they are for the operation planned for you, and how they are usually treated.

What are the advantages of surgery?

Unlike Crohn’s Disease, which can recur after surgery, Ulcerative Colitis cannot recur once the colon has been removed, and so is ‘cured’ by surgery. This should mean:

• relief from pain
• relief from symptoms such as urgency and diarrhoea
• being able to stop taking drugs which may be causing side effects
• feeling able to lead a fuller life, for example being able to leave the house in a more relaxed frame of mind.

However, as above, complications do sometimes develop, and it will take time to get used to having a pouch or an ileostomy.

Coming up in Part 4 - What to expect - Before and After Surgery