August 20, 2015

Living with Crohns Disease - My Story

It's been a while since I last posted anything on my blog and that's because I very recently experienced a flare up of my Crohns disease which resulted in me being admitted back into hospital and going through a serious, life changing operation. I decided I wanted to blog about my experience with Crohns disease - I want to raise awareness for this terrible disease and I want to help others who may be in a similar position. So just a warning, this is going to be a long post, it's going to be very personal and it is going to touch on topics which some people will find embarrassing to discuss. I want to be honest and I want to tell my story. 

What is Crohns Disease?

Crohns Disease is a long term condition which causes inflammation of the digestive system. Inflammation can effect any part of the digestive system, from the mouth to the back passage but it mostly occurs in the last section of the small intestine (ileum) or the large intestine (colon).

Symptoms include;
Abdominal Pain
Weight Loss
Blood and Mucus in your stool

It is currently unknown as to why people develop this disease and there is no cure at this moment in time. There are however a few methods of treatment to help control the disease, such as steroids, infusions, injections etc and of course there is the option of surgery. It is estimated that roughly 7 out of 10 people with Crohns disease will require surgery at some point.

With Crohns it is very easy to become anaemic as your body won't be absorbing nutrients from the food you consume. Fistulas and ulcers are also quite common. Crohns can also lead to problems with joints, skin, eyes, bones, liver, blood circulation and slightly increases your chance of bowel cancer.

What Causes Crohns? 

Despite research being done the exact cause of Crohns disease is not known. Researchers believe there's a strong link between the genes you've inherited and an abnormal reaction of the immune system to certain bacteria in the intestines (which they think may have something to do with environmental factors) Viruses, smoking, diet, bacteria and stress have all been suggested as possible triggers although there is no solid evidence that any of these cause Crohns.

My Story
Midway through 2014 I began noticing I was having occasional mild stomach cramps that always seemed to start in the evening. Some nights I experienced them, some nights I didn't so I didn't think too much of it and put it down to uncomfortable bloating or snacking too much. It wasn't really until I started uni that I began realising these stomach pains were becoming really frequent and I was having them pretty much everyday. Freshers week in particular I noticed that I felt really sore and that my body physically ached. My stomach was incredibly unsettled and (embarrassingly) I was visiting the toilet more frequently. Once again I put it down to simply overdoing it during freshers week with poor diet and too much drink. Then as my stomach pains continued during the uni year and I started experiencing them in the day time too, I put it down to Social Anxiety and then stress.

Things then escalated and I noticed that whilst eating certain foods I would feel the urge to gag and throw up. Although it would never actually result in physically throwing up, I would always gag on certain textures of food. Anything potato / bread based seemed to trigger it at first. I've always been a fussy eater so I convinced myself that it was just me being awkward with food. Fast forward to February / March 2015 and I noticed that I had lost weight and had dropped from a comfortable size 8 to a size 6. I was now 6 and a half stone.

In my last term of university I experienced my first ever full on Crohns flare and dropped to 6 stone. Almost all food made me feel ill, sometimes the smell alone was enough to make me feel sick. Anything I ate I began throwing up almost instantly. My stomach cramps became even more intense and I'd wake up multiple times in the night with sharp shooting pains and covered in sweat. I felt tired all the time, I'd come in from uni, sit down to do my work and fall asleep instantly. I began feeling really weak and even the slightest physical activity would leave me completely breathless. I couldn't stand for very long so if I was out doing food shopping, I'd have to regularly squat down to take a break and pretend to look at stuff on the bottom shelf so I didn't look odd. I had sores on the corners of my mouth, I was incredibly pale and my heart was constantly beating fast. To any of you reading this you may be thinking "Why didn't you take yourself to the doctors?" well as someone who has never really experienced being ill throughout their lifetime, I was pretty stubborn to admit that something was wrong and that I needed help. I put my education first and decided I would go to the doctors once I'd finished my first year of uni. Stupid? Yes. I put my life at risk for something so silly considering whatever grade you achieve in first year does not actually count towards your degree.

My mum and boyfriend had both noticed how sick and frail I looked and began worrying about me. My mum was convinced I was anorexic and decided to contact the doctors about me without my knowledge. She arranged an appointment for me once I returned from uni and I agreed to go. When I returned from university, my health declined and I physically couldn't even stand for more than a minute. I couldn't even shower, I just lay on the couch writhing around in agony with a hot water bottle. After a few trips to the doctors and some blood work being done, I was told my bloods came back abnormal and I was admitted to the hospital to run some tests and receive some form of treatment.

After waiting four hours in A&E I was finally called through and seen by a nurse. She inserted a cannula, took some blood, requested a urine sample, weighed me, took me for x-rays and did a rectal exam and that was it for the night. The next morning a bed became available and I was moved to a ward where I was put on fluids for a while. I met with multiple doctors who questioned me about lots of different things and felt my stomach. They then sent me for a CT scan, requested that I had an iron infusion and took more blood. After waiting a little while a doctor came back and informed me that the CT scan revealed that it wasn't bowel cancer like they first feared, but was instead severe Crohns disease. It was a relief at first to finally have a diagnosis, but then when I actually started looking more into the full extent of what Crohns disease can do, I became incredibly upset. I also felt really cheated, no-one in my family has the disease, I don't smoke, I rarely drink and my diet is pretty normal. I didn't understand why I had it.

I was sent home the same day with an 8 week course of steroids (Prednisolone). For the first week I still felt uncomfortable, however after that first week the steroids began kicking in and I started to feel much better. My pain eased off, and I began eating normally again. Anyone who is familiar with Prednisolone will know that it drives your appetite through the roof and soon you start eating everything in sight. I started gaining weight and it seemed like everything was getting better. I was soon moved on to Azathiroprine - a drug to help control my Crohns in the long run as steroids are only a short term option. However 2 weeks into taking it, I was back to having stomach pains all day every day. Then my most recent blood test came back bad and I was told to return to hospital to receive treatment.

 Rather reluctantly I returned to the hospital on the 21st of July. At first I was told I'd be in for a few days whilst I had some steroids and fluids administered through IV. However, my inflammation refused to respond to any of the treatment and my condition began to deteriorate. It was after one night where my temperature shot up and my heart rate increased rapidly and there was a minor scare that I had an obstruction of the bowel that the decision was made for me to undergo surgery. My consultant decided that I should undergo a bowel resection, where they would remove the part of my small intestine where all the damage was and would connect the two healthy pieces of bowel together. Although there was no confirmation that this would definitely be the case. If upon inspection the damage was so bad they would create a temporary stoma instead. For those of you who don't know what a stoma is it's basically where they create an opening in your abdomen and join the bowel to that so you excrete through that hole and into a bag which attaches to your skin.

The thought of surgery terrified me. I was so upset that I spent the 2 days prior to my operation in a flood of tears. I didn't want to be scarred, I didn't want to be cut open and have my insides messed around with and I didn't want to wake up to find I had a stoma. It sounds so silly as I should have been grateful that they were going ahead with a life changing operation that would benefit my quality of life but instead I was scared of silly little issues such as would my boyfriend still find me attractive or would I ever be confident with my body again? On Saturday the 1st of August I was taken down for my surgery. I can honestly say that being wheeled into the operating room was the scariest moment of my life, I've never felt fear like it. The whole surgical team were lovely, they instantly calmed me down and helped distract me. They inserted a cannula into my hand, put an oxygen mask on my face and administered the general anaesthetic and that was me. My surgery lasted approximately four hours.

The next thing I knew, I was being woken up by either some nurses or surgeons (I can't quite recall) and I was in a lot of pain. The first thing I said was "Bag?" in which I was referring to did they need to create a stoma? Which they answered no. I then said "Pain" and passed back out. Later on I woke back up to find I was being wheeled to the intensive care unit. I could barely keep my eyes open but my parents and my boyfriend came to see me and comfort me for a few minutes before they had to leave. I was kept in intensive care for two days as there was a slight complication with the intravenous morphine pump that they inserted during surgery which is why I initially woke up in so much pain. When I fully came round I could see I had a large dressing in the middle of my stomach and a drain bag on the right side of stomach that was filled with blood and some sort of yellow fluid. The day after my surgery I was only allowed sips of water and was made to get out of bed and sit in the nearby arm chair. It was exhausting and incredibly painful but you have to get around and move to help blood flow and to kick start your recovery. I spent most of this day completely off my face on morphine, to the point where I could barely keep my eyes open. The next day I was allowed soft food so I was given soup, ice cream and one of my special nutritional drinks. I was relying on the morphine pump less so I was later then moved out of intensive care and into a surgical ward instead where later that night I was able to get out of bed by myself and walk without any assistance.

On the 5th of August I was discharged from hospital and allowed home. I had spent 16 days there in total and was so relieved to finally be back home with my family and my dog. Since coming home my recovery has been coming along rather nicely. My staples have been removed, my drain hole on my right side has closed up, I've been able to progress from a soft diet back to a fairly normal diet and my strength is slowly returning. I'm not going to lie and say that surgery was a walk in the park as it really has took it's toll on me emotionally and the physical recovery process itself is at least 12 weeks, however - I can honestly say that it was the best thing for me as I instantly felt relief from the pain of Crohns. The mild aches I've experienced from surgery are nothing in comparison to the pain I felt from Crohns. I can now enjoy food again, I can eat without fear of pain and that is a wonderful feeling.

I still have a very long road ahead of me in terms of recovery, and there is always the chance that Crohns can re-appear in another part of the bowel but for now I'm pain free and happy so I'm going to enjoy it whilst it lasts and try not to focus too much on "What if's?" I plan on going back to university in October and continuing on with my studies. I don't want this illness to stop me from living my life and I certainly don't want it to define who I am as a person.