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 :)

Crohn's and Surgery Part 1 - When It's Necessary

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.

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 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). This has 3 sections: the duodenum, jejunum and ileum. 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 colon (large intestine or large bowel).

Finally, the colon absorbs the liquid and the left over waste becomes solid faeces (stools). These collect in the rectum and are passed out through the anus in a bowel movement.

How does Crohn’s Disease affect the gut? 

Crohn’s Disease causes inflammation and can affect any part of the gut, although it is most commonly found in the ileum (the lower end of the small intestine) or in the colon. The areas of inflammation are often patchy, with sections of normal gut in between. A patch of inflammation may be small, only a few centimetres, or spread quite a distance along part of the gut. As well as affecting the lining of the bowel, Crohn’s may also go deeper into the bowel wall and cause abscesses or a fistula (see below).

The type of treatment recommended for Crohn’s will depend on the part(s) of the gut affected and on the severity of the symptoms. It may be medical or surgical or a combination of both. For some people, especially children, nutritional therapy (the use of an exclusive liquid diet to treat or reduce inflammation) can be a useful option.

When is surgery necessary? 

Over the last decade advances such as the development of biological drugs have produced increasingly effective medical therapies for Crohn’s Disease. There have also been changes in the way surgery for Crohn’s is now managed, for example extensive resections (removal of diseased sections of the intestine) are now less common. Nevertheless, surgery remains an important treatment option, often in combination with medical therapies, and it is estimated that about 70% of people with Crohn’s will still need surgery at some
point in their lives.

Some of the most common reasons for surgery are outlined below.

Poor response to drug or nutritional treatment 
Sometimes drug and/or nutritional therapies fail to control the inflammation and you may continue to experience symptoms such as diarrhoea, pain, poor appetite, and weight loss. Your doctor may then recommend surgery to remove any irreversibly damaged sections of intestine.

Strictures in the intestine 
The inflammation from Crohn’s may cause scarring, and this can lead to a stricture, or narrowing of the space in the intestine, especially in the small intestine. This can make it difficult for food or waste matter to pass through and may cause a blockage. Symptoms of a stricture include cramping pains, distension or bloating, and, if there is a serious blockage, nausea, vomiting and constipation. You may need surgery to
overcome the narrowing or blockage.

Abscesses or fistulas
Sometimes the inflammation spreads through the full thickness of the bowel wall and forms an abscess (a collection of pus). As the abscess develops it may ‘hollow out’ a chamber or hole. This then becomes a fistula - a channel or passageway linking the bowel to another loop of bowel, another organ such as the bladder or vagina, or the outside skin. About a third of people with Crohn’s develop fistulas (or fistulae), most commonly perianal fistulas linking the anal canal (back passage) to the skin near the anus. Fistula symptoms vary but often include leaks of faecal matter, and can be very distressing. (For more information on fistulas, see our information sheet, Living with a Fistula.) Abscesses can cause pain, fever and feeling generally unwell. Surgery can be used to treat both abscesses and fistulas.

Delayed growth in children
Poor absorption of nutrients combined with steroid treatment can lead to delayed growth in children with Crohn’s Disease. While this is most likely to be managed with nutritional treatment and drug therapy, it can also be helpful to remove any severely damaged sections of the intestine.

Cancer 
If you have severe Crohn’s Disease 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. (For more details on this, see our information sheet, Bowel Cancer and IBD.) This may require surgery.

Emergency problems 
Emergency surgery is not often required for Crohn’s Disease, but may be needed if there is severe bleeding from the bowel, a perforation (a hole or tear in the wall of the bowel), for toxic megacolon (very severe disease of the colon), or to treat a bowel obstruction.

Coming up in Part 2: Which are the most common types of operation?