Guest Writer - Rosina

You Were More Likely To Win The Lottery

The title should give you relief in that what happened to me, it is very unlikely to happen this way. ...And if it does, you will survive! 

March 2012: 1 KFC later (this was before I knew anything was wrong, don't tell me off!) I had incredible pains in my stomach/gut and had no idea what on earth had happened. I had had bloating, IBS and general nausea regularly for the last 2 years but I just thought that was just going to be my life and all was fine. 

Over the next few months the pain would come and go, sometimes I couldn't drink anything, even water let alone eat much without it feeling awful. The worst was the middle of the night, I would wake up and be in incredible pain, screaming out for my parents to keep me company and make it go away, obviously they couldn't, but I was scared and I needed the company. I was batted back and forth between home, the doctor and the dietician and no diagnosis was made. So I decided to go for a private consultation. 

July 2012: The private consultation was not what I was expecting, I thought nothing much was wrong with me, but this was when the dreaded C word reared it head for the first time, 'Worst case scenario, you could have Crohn's. "Worst case," I thought, "So I won't have that will I?!"

August 2012: A few weeks later and I was admitted to hospital with more pain and severe dehydration, left in acute assessment for a week, I eventually found myself in woman's health (not the magazine unfortunately). The nurses knew nothing of digestive issues and the doctors were an endangered species, but I had privately booked an MRI so there was hope! Segregated to my own room, as I was an infection risk, I felt a bit better and thought maybe I was OK. 

Then the MRI came around and the dreaded 2 jugs of dye. There were tears, there were tantrums, the time it should have taken to drink said dye doubled then tripled, after lots of blackcurrant cordial and 1 jug of dye, they decided to give it a punt and somehow I managed not to throw up all over the shiny MRI machine. 

The results came back the following day; 5 doctors in my tiny side room and me sat intimidated on my own. 'You have Crohn's Disease'. I kept it together until they left, at which point I burst into tears at the fact I was going to be ill forever. One thought that kept coming back to me at various points since I was diagnosed was that I was never going to sit down the pub with my friends for a quiet drink and a laugh ever again (this wasn't true though!). 


The nurses shut my door and left me to it, I rang my boyfriend and he tried to console me but it wasn't going to work. A few days later I was feeling brighter, they were putting me on medication that should stop the pain and heal the inflammation. The fact these tablets were steroids didn't actually seem to bother me strangely enough, I was happy that there was some sort of solution. 

A month or so went by and I was put in to have a colonoscopy, I wasn't happy about it, but I was being brave (for me) and looking forward to eating after the dreaded prep and 24 hour starvation. Unfortunately, it didn't go as planned and we were unable to go through the whole procedure because of the pain. I left and thought nothing of it, proceeded to eat my weight in food the following day and not worry when I didn't go to the toilet for a few days because I'd just emptied my whole system right? Wrong! So so wrong. 

September 2012: 3 days later I woke up with usual Crohn's pain, I thought nothing of it, swiftly went to the toilet expecting the norm, however, I ended up in absolute agony. I am a bit of a worrier, so thankfully I had taken my phone to the toilet with me and as I began to feel faint and collapse on the floor in agony, I rang my parents to come and save me. We weren't sure what to do, whether I should just go back to bed? I mean it had been pretty damn painful before right? Maybe this was just a bad day? 

I didn't feel right, I'm not really sure why, but I knew something was wrong so we rang the consultant and she told us to call an ambulance. The first response woman had arrived and was lovely, gave me some gas and air but it wasn't really touching the pain. I was screaming, it was loud, I was in PAIN. Once the ambulance arrived, they were less than impressed with me, I was too loud and I should have taken my painkillers (I was prescribed codeine, if anyone has experienced the effects of codeine, then they know they aren't the best idea). 

Apparently I needed to take less gas and air and I should have known that (never been in an ambulance before or had gas and air) then once we had arrived, I was apparently being disrespectful by being noisy because there were people who were actually ill and I apparently was not one of those people? Anyway, after several hours of screaming and pain and dehydration in A&E they got a cannula in my hand after several attempts and took me up to the correct department (Yay!) I was also finally given some morphine as my blood pressure had come up a bit, one of the nurses was shocked I was still awake and in pain after I'd had enough morphine to knock out even the most tolerant of patients. 

Then I met my amazing surgeon who told me I had a perforation and needed surgery. I was having none of it: "Why do I need surgery? I don't need surgery! It's me, why would I need surgery?!" Well I eventually realised, in my drugged up stupor, I definitely did need surgery and after several attempts at concentration I managed to read and sign the consent form. I was going to theatre and I was going to have to deal with it. 

My operation lasted 6 hours and I woke up in intensive care or some such department where you get your own TV and your own personal nurse 24 hours a day (pretty nice if i wasn't actually too ill to appreciate it) I had my morphine and my TV and my nurse, I was emotional but happy to be OK-ish. 

I had, however, woken up with a stoma, something I was warned of, but again it was the worst case scenario so I didn't think that would happen again? It totally did. At first with all my drugs and my aliveness I wasn't too bothered, then I got moved up to the ward and realised I wouldn't have my special nurses helping me all the time and I would have to do everything myself and I would have to go home and live my life with my stoma (FYI it was an ileostomy). 

At first I was devastated, full blown depression and crying everyday, wanting to go home but knowing my life would definitely not be the same. Then came the shower! If you have ever been in hospital and incapacitated for any length of time, you will know how amazing the first shower is, it is like a turning point, the beginning of normality. The shower made me so much happier and I went on an online shopping spree buying clothes that would hide my stoma etc. 

The rest of the hospital trip definitely had its ups and downs with people coming and going and me staying and staying some more. Even people with conditions worse than mine seemed to come and go too! I did finally get home, it was a long process to get back to normal. 

You get frustrated and upset that you have no energy and you get angry that this happened to you but you do get over it. The antibiotics were horrible, the constant worry about things going wrong was horrible, but at the end of the day, it saved my life. My friends didn't have a clue that I had a stoma unless I told them, neither did work colleagues or anyone else for that matter. I worried about it, but I really didn't need to. I had mishaps etc but still nobody knew. When it neared my reversal I didn't want it reversed! 

February 2013: I was scared about my operation, I'd been through social events, christmas, I had a happy relationship and I was managing to go to work. I could quite happily have kept it if I had needed to, but I did want it reversed, in my heart of hearts I knew I needed to be brave. And I was and it all went fine. I had to go to the toilet a million times a day and it was annoying but I was still not going to let it get me down and it gets better, almost normal within a month, the only way has been up since then! 

I have since gone back to my job full time, fully grasped my medical needs/appointments/injections, gone on an amazing holiday with my boyfriend, started a qualification, had a busy social life, gone jet skiing(!!), eaten a KFC again (my bad), gone out to night clubs (I have stopped drinking though, but I never thought i'd go on a night out again last year!) and gone on several weekends away with friends and lots and lots of other things that anyone in my previous situation would definitely not think was possible!

Basically my life is as good as, if not better than, it was before any of this ever happened and I am a much more confident and grown up individual than I was a year ago. This is a bit of a horror story, but as the title says 'you were more likely to win the lottery' which is a direct quote from my consultant when describing how quick and what happened to me last year. I have just started on Azathioprine, after nearly a year of no crohns related issues (since my first op) as a preventative treatment due to the aggressive nature of my disease. Hopefully the only way is up! *touch wood!* You will survive! Please think positive :)

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. 

How Do Young People Feel About Surgery for IBD?

As part of the "Living with IBD"  Research Awards, a grant was awarded to Marion Allison (Consultant Colorectal Nurse Specialist) at Barts Health NHS Trust. They looked into the experiences of young people who face, or have had, surgery.

As she and Dr. James Lindsay (Consultant Gastroenterologist) explain in the film, many young people are fearful of the disruption of surgery despite the potential benefits to their quality of life. Find out how the research was carried out and what arose...

Of course, as the text at the start of the film points out, every patient's experience is different. The researchers give their opinions based on their ongoing research. So don't worry if you don't match what's said - we're all unique!

Crohn's and Surgery Part 3 - Risks, Advantages, Stomas and Laparoscopy

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

Laparoscopy

Some of the operations outlined in Crohn's and Surgery Part 2, for example ileo-caecal resections, 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 if you have already had abdominal surgery.

Stomas

An ileostomy showing the stoma opening

As described above, sometimes in surgery for Crohn’s 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, 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.
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

A 2 piece stoma bag
(1 piece also available)

four to six times a day, and changed about twice a week. Colostomies pass firmer stool, so colostomy bags are usually emptied slightly less frequently, (about one to three times a day), and may need to be changed each time.

Are there risks to surgery?

Crohn’s Disease 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 Crohn’s, like all surgery, will carry some general risks, such as 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) leaks or the small bowel becomes obstructed. 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.

Your surgical team will be able to tell you more about complications like these, and how they are usually treated.

Because Crohn’s Disease can develop anywhere in the gut, including in previously healthy sections of the small intestine or colon, surgery cannot ‘cure’ it. So, there is always a chance that symptoms will reoccur after the operation, either close to the operation site or in another part of the gut. It may be possible to treat these symptoms with medication, but it could mean that another operation is necessary. There is some research to show that about half of those who have an ileo-colonic resection need another operation within 10 years. However, recent studies have suggested that the newer biological medical therapies may help to prevent Crohn’s recurring following surgery.

What are the advantages of surgery?

Depending on the operation, surgery can bring real benefits such as:

• relief from pain
• relief from symptoms such as diarrhoea or vomiting
• being able to reduce or even stop taking drugs which may be causing side effects
• the ability to eat a more varied diet and to gain weight more easily
• feeling able to lead a fuller life, for example being able to leave the house in a more relaxed frame of mind.

Many people have found that once they have recovered from their operation their quality of life is much improved. In one study looking at resection surgery from the patient’s point of view a majority of those interviewed said they wish they had had their operation earlier.

Coming up in Part 4 - What to Expect: Before, During and After Surgery