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Catia Fernandes avatar
Catia Fernandes

My Personal Journey with Crohns Disease to be posted on Social Media

I want to show others Crohns Disease doesn't Win for Bowel Disease UK because standing up to it makes you stronger for next time

73 %
raised of £5,000 target
by 50 supporters

Bowel Disease UK

We fund vital medical research to find better treatments & possible cures

Charity Registration No. 1117241


Hi Everyone, 

My name is Catia, I was diagnosed with Crohns Disease at the age of 15, when I was about to take my GCSE's not a great time but I stuck to it despite the amounts of medication I was under to stabilise my condition.

When I was diagnosed there wasn't a lot of information or much awareness of what Crohns disease was, I wasn't educated by anyone. I began to fall ill again at the age of 17 to 19 and I just went about my daily life as if it was normal to be going to the toilet 20 times a day or to being sick every time I had something to eat.

I had to drop out of college due to being so ill and having no energy to study, was disappointing but as I always say when one door closes another opens. I had a part time job at the time and I was offered to join their own management training scheme which I did and was given a position as a Department Manager in one of their new store. I didn't have to worry about studying for exams or concentrate in class, I would learn as I work which was far better for me.

But on 19th March 1999 I was rushed to hospital as an emergency, my abdomen had distended so severely I could barely breathe. I never forget the acute pain I felt that day, it took a couple of days to find someone who knew what was happening to me as it was not clear even though I had informed the doctors I was a Crohns Disease sufferer.

I was blessed by ending up on the hands of an amazing Surgeon Professor Devinder Kumar at St Georges Hospital. My bowels had split and I was septic and was rushed to theatre as soon as possible, I remember that when I was placed on the operating table and they were trying to put me under anaesthetic I would scream "I am going to die" that's how bad it felt at that moment. Surgery was really long due to the fact my bowels had split in 14 places. I went into a comma and was not meant to survive my mum was told, but since I never smoked and drank alcohol growing up I SURVIVED. It was a very long battle to get over this and make it back into the real world. I suffered complications and had a pulmonary embolism in my right lung took 6 months to clear with warfarin treatment, this lead doctors to test me to find what caused it. I was diagnosed with Factor V Leiden deficiency which Crohns sufferers are prone to it had been found in some previous  cases.

This operation is what set what my life would be like in the future, dealing with challenges  this severe case of Crohns Disease would be doing to my body. 

Crohns has challenged me so much over the last 19 years, I had to make difficult decisions that affected my future. I found it hard to stay in relationships because I couldn't face seeing someone that loved me see me struggle so much and my circumstances would dictate the future they would have. In 2008 my marriage ended, and I decided independence was the way to go, meant I could just hide from the world when ill and struggling with my battle with Crohns and out I would come back into the outside world when my battle was over.

I always had the mindset I can beat this and I always want the world to remember me for when I look healthy and well not for how ill I am and the pain I suffered. 

My career is my saviour I would say the distraction and the workaholic attitude made me overcome the niggling moments where I had a flare up, don't get me wrong I had to take time off sick from work but mainly when I was having surgery and hospitalised. I thrived on the stress of my job and how demanding it was but at the same time I had to adapt to control the anxiety created by the stress. I found natural ways of controlling it through hypnotherapy, and alternative therapies. This helped my mind-set in controlling pain and overcoming without the heavy drugs one is prescribed all the time. I like to be in control of my mind and body its the only way both can stay connected and I can feel what is happening inside.

  I have gone through well over 20 operations in the last 19 years, lost most of my small bowel but still got enough to just about skip the short bowel syndrome scenario which would mean I would be on a feed for the rest of my life and have to go through a strict regime to keep my body going. I struggled with fistulas since 2009 from when I had my first large bowel resection.  I also have lost quite a bit of large bowel but still lucky to have my colon.

In 2008 I had my gallbladder out as I had gallstones, I also battled with problems in my ovaries with cysts and heavy periods which then lead me to make a big decision that would affect my future but would improve my quality of life. I asked my Gynaecologist to perform a hysterectomy which I had to fight for it as I was only 31 at the time, there were concerns about fact I hadn't got any children and the aspects of needing HRT. Despite the long list of concerns I got what I wanted and needed. In July 2011 I had an hysterectomy and spent 11 weeks in hospital had two more operations during this period due to complications which led to me being given an Ileostomy for the first time. When I woke up and found the stoma on me I didn't really like the idea. It was a difficult period for me to try come to terms with it and at the same time having to change my diet to make this stoma stop being high maintenance. It was 90 cm away  my stomach so anything I drunk or ate would end up straight out of my body and into the stoma. A bit like a bucket with a hole on the side you put water in it and it comes out of the hole straight away. lol But I was determined to adjust and tried but because it was so demanding and I was constantly ill from dehydration it had to be reversed. I went home after  this reversal, but I got to say I wanted another one because I noticed it gave me life my pain was nothing like it was before.

 I made it back to the real world and back to my job, later in the year  I began to have troubles with fistulas again but this one was quite bad. It gave me severe abdominal  pain as well as pelvic pain. I couldn't walk around for very long I began to leak from places I shouldn't really every time I had to go to the toilet, became seriously ill lost so much weight but I still would continue to work and fit my weekly check ups at the hospital on my days off. I was hospitalised later near xmas 2011 and my Consultant dropped the news I had numerous fistulas in my digestive system, some were discharging through my scar some inside my body. So I needed further surgery to make me better or I would end up seriously ill. 

On the 12th March 2012  three days before my birthday I had my operation, the end of the large bowel was dis-functioned and Sirius the colostomy was born. Yes I named it but I won't take credit for the name a friend of mine named him, I call this day the  beginning of my engagement to Sirius and the start of a relationship that was going to break the cycle of flare ups and struggles with Crohn's. I was right this engagement has given me life as I never knew it could be like. I hardly had a day off sick from work, I could do things I never thought I would, my anxiety that had stopped me going out or socialising was no longer there after I had the right stoma and adjusted to it. I had the best time of my life and I was over the moon for it.

Mid 2013 I began to have pain in my pelvis again and struggling with cramps in my abdomen caused by a fistula wound on my rectum which wouldn't heal and should of done with the infliximab infusions I was having, and we even tried to switch to Humira in the hope it would heal. This fistula was the reason Sirius was born, it was irreparable in surgery in March 2012 so there was hope that resting the bowel would heal it on its own and eventually I would recover and at some point have a reversal. But that was never going to be the case once my tests showed no change and I had developed sepsis in my pelvis had to be prescribed antibiotics to help me fight the infection. It wouldn't go away and my Consultant said to me "Catia your going to have to keep that stoma, I just been waiting for you to be happy in your mind that there is no going back." I cried a way it was a relief, I had already 6 months from having Sirius thought I couldn't bare to hear him tell me let's reverse it. I wanted to keep it so badly because I wasn't prepared to give it up.

On 31st September 2013 I was admitted for my elective surgery, I was nervous but in the back of my head I was like this will be easy there is no way I will have complications. I had the right weight, I had not suffered any issues apart from the obvious so I will be out in 7 days and back at work just like the way my boss said lol. Little did I know what life would be like when I woke up. The day after surgery my Surgical Consultant told me "When I opened you up I could cry, your bladder was stuck  to your small bowel, everything inside you was attached in some way shape or form. I tried separating things but your small bowel had 4 perforations and I started to run out time by the time I got your perforations fixed. So had to get to where I needed to took the rectum away and the diseased bowel that was dis-functioned."

I had to follow a nil by mouth diet for two weeks and then try introduce food. But I began to have lots of pain struggling and being sick things weren't going too well for me. Then I began to leak from my bowel inside and it was coming out through my vagina at first as my Anus was sealed off.  No one could find where the leak was scans were normal which was so frustrating. I had to start wearing Tena ladies underwear (nappies) and finding ways in which I could get some of my dignity back. I felt like my whole world was collapsing an how could that be when I was ever so well apart from the fistula issue. 

November 2013 I am still in hospital and fighting to get some progress in my condition but I didn't instead I began to leak from my Anus once my stitches came out and I was leaking even more. A CT scan showed where the leak was so I was taken to theatre again on the 20th November. I was sent to HDU after surgery as I had complications in surgery and was opened for too long. Once they brought me round I was informed, he could not find leak and I had 2 further small bowel perforations, which were so close that lead to me having 5 inches of small bowel taken away from me. I went back to the ward day later, and I was continuing again on the nil by mouth process. 

But on the 23rd November I began to leak again through my anus and vagina, and began to struggle with high temperatures. Next thing I know I was leaking faecal matter into the drain coming out side of my abdomen. My Surgical Consultant was notified and he advised the on call Surgeon how to proceed when they took me back to theatre late that night. I never forget the look in my mums eyes how scared she was and how ill I was and nothing had been going right since day 2 from the first surgery back in September.  Even I had sense of dread as it was serious what was happening to me  my body was so sore from everything, barely had any proper diet or if any at all due to the needs to remain nil by mouth most of the time. I went to theatre at midnight and went straight into intensive care as my body wouldn't cope with what happened to me in theatre and all the things that had been going on. When I saw the Surgeon they informed me that where I had the resection on Wednesday I was leaking between the stitches and they reinforced them as well as deal with the leak that appeared as they were closing me up. Yes that was the mysterious leak that would only leak if pressure applied to it. That was relief so I thought that would be it now road to recovery may begin. I was in intensive care for a week and then moved to a ward. I Was given TPN feed which is given through a vein opposed to  into your stomach as my bowels need a strict rest yet again for the resection and the work they did heal. My body has been through so much I knew it would take ages to heal, but with the TPN feed which is designed unique to you it would get me back to where I needed to be in terms of nutrition. Oh yes I had the nil by mouth to follow and that was to be like it until I stopped leaking faeces and my drain was empty. lol  I spent xmas and New years in hospital, began to get down about fact I couldn't do anything for myself depending on my mum and sister for support and  of course the amazing nursing staff. This had become by far my biggest battle, there is so much more that happened and I so will share it with you all the whole ten months with photographs of what my body went through on Social Media to raise even more awareness so that it can help fund the search for a cure at Bowel Disease UK.

19 years of Crohns is a lot to cram into this page, I spent the last ten months in hospital fighting to be part of the real world and it did get very grim. At times thought I would never be back to my full time job where there was the career I built despite all the challenges Crohns brought into my life. I would never eat food again and be able to enjoy the little nice things I enjoy, you begin to allow yourself to be sucked into the negativity and how hard the fight is. But I never gave up, I had bad days and good days even a good hour of peace and no pain was a major plus for me and did I acknowledge those moments be grateful for them.  I was grateful to still be alive and be able to have some sort of life, I meet some incredible people in hospital. Mostly new patients that had been literally just diagnosed or others that had it and they were struggling with it all. Nurses always told those patients of me and my tenacity and drive to not give into this dreadful illness, then it would be those patients would seek me out and ask me questions around what they were experiencing and did I ever have it. Most of the things yes I did and was able to share how I managed to get around it and make it work so I could continue my life as normal it could be. Some said to me mine isn't as bad as yours I feel silly now thinking what I have is the end of the world and yet I am not any where near where you are. I found a new vocation in hospital, supporting other sufferers whilst I dealt with my own demons. This new vocation is what got me through those last 10 months, I had a purpose it gives others reassurance that it's ok to cry and feel down because of their pain. Some days I would be seeing several people, it was like I had my own doctors round lol. 

There was one patient I meet that touched me deeply, a young mum that had a 7 year old daughter. She had been left with a very nasty wound on her rectum, this wound was hard to deal with needed to be dressed and packed daily a painful experience for her to have done. It limited her to be laying on her back, she couldn't sit or walk around wouldn't leave her bed for ages since surgery I believe. I became friends and I exchanged secrets and tricks of the trade as you do to try help her get confident about leaving that bed, because if she didn't well she would just be stuck in it. She was on the bay next to mine, so I always went to her bedside to visit her. I gave her one of my secrets of coping with leaks from the backside discreet Tena lady underwear something you would never associate with a 34 year old lol. I gave her one to try out see how she went, next thing I know later that day she had got out bed with help got dressed out of hospital gown and in her little zimmer frame she came to my bay briefly with her mum by her side. So we managed to get her moved to my bay she ended up on the bed opposite me, on the very first morning I got my toiletries and bits ready to go have a shower. She asked me where I was going and I told her, when I got back to my bed she was gone a little while later she appeared all fresh and dressed with her frame. She had gone to have her wash on her own, I was so proud of her, she continued to progress we kept each upbeat had loads of laughs. She got to go home before me and I was so proud of her, that is what makes my day.

Which brings me to why I want to raise £5000 pounds for Bowel Disease UK, it was founded by a patient of the surgical consultant I belong to Professor Devinder Kumar whom have not only saved my life at 19 years old but has worked miracles in my body despite the impossible situations Crohns has caused  to my body especially these last 10 months. They perform great research work to aid and help sufferers have a better quality of life as well as the fight to find a cure so we all can start living our lives without pain. I have always have been quite private about my condition and not shared information in public about it, only a small amount people know I have it. My family are the only ones that seen close up what it does, but I have taken photographs of every event and my progress over the last ten months. They are the side of me that I hide from the world, so no wonder the world has not been educated, we all feel ashamed of the mishaps. The fact our dignity is lost from the day you started to be so ill and don't know why until someone diagnoses you, I remember took 3 years to diagnose me. I was told I was bulimic or anorexic had to go see the psychotherapists, dieticians, change my diet and only because I didn't show improvement they thought lets do some tests. 

So I decided I will show the world my last ten months and the things I had to go through on Social Media or Support groups or anyone that is willing to listen . Once the £5000 is reached I will post it soon after it. Believe you me there are things one never thinks are hiding underneath pretty clothes when you suffer with Crohns. Hence why is hard for anyone to believe how seriously ill one is when we are in pain and that is the only thing that seems obvious to anyone.  Pretty Clothes can't hide  pain, but I hide it behind a job as I find that my determination helps me overcome the pain levels. I always say mind over matter, if you don't think about it, it's easy to overcome and get through it. I wouldn't change my life for anything it made me who I am and I will always win. I am the boss Crohn's is my challenge that keeps me in check and gives me the insight to help others and inspire them.

So I ask you all donate generously, this money will all go towards Bowel disease UK to fund it's research at St Georges Hospital in London. All the patients that go to St Georges Hospital will benefit directly from their pioneering research work. I want to give back for all the amazing care I have been given and blessed with and if it wasn't for them I certainly wouldn't  got where I am today and my dreams didn't have to die if anything it made me more determined to make them happen.

 I hope my story will show others that no matter how bad it gets your hopes and dreams don't have to die on the day you get diagnosed with Crohns Disease. It should make you want to rise to the challenge of living life to the max and enjoying it.

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