Hi, Im Glen and I have suffered with this disease for 11 years. I was diagnosed when I was 23 years old and have been battling it ever since.
Crohns disease is an auto immune disease. It can affect anywhere from the mouth to the anus but most commonly affects the small intestine and/or colon. It causes inflammation, deep ulcers and scarring to the wall of the intestine and often occurs in patches
The main symptoms are pain in the abdomen, urgent diarrhoea, general tiredness and loss of weight. Crohn’s is sometimes associated with other inflammatory conditions affecting the joints, skin and eyes. You lose a lot of blood with this disease too and by its nature it is nasty and difficult to talk about!
When I was originally diagnosed I was already feeling down. I had lost a fair few family members and friends over the previous few years and being young and niave, I simply did not understand death and kept ploughing on with life trying to ignore the feelings I had. I did ventually see a cognative therapist who was brilliant. She explained what had led to my feeling so low, and what I could do to help myself to rebuild my confidence and happy, bubbly character. It worked, but soon this disease came along and things got worse. At that young age i was also suffering badly with my skin (acne) and this got worse again in the first few years of the disease due to being given steroids. Once again i struggled with very low feelings amongst the pain of the disease, weight loss and terrible skin. It felt as though my world was collapsing around me, but i was lucky enough to have a loving girlfriend who helped me through. She advised me to seek a better consultant as the one I had was very rude and intent on using only one drug to treat me.
I managed to use the cognative therapy techniques I was tought to feel a little better, and went on to use my newly found motivation and strength to seek another gastro- consultant. The one I found was / is a great consultant, who put me on other treatments which were a little kinder to my skin, and this in turn gave me less to worry about. I then sought a dermatologist to help sort out that problem too. I really needed my skin to be clear for two reasons -
1 - I was sick of the problem as i had suffered for years and nothing worked
2- i was getting married that July, and the thought of looking a state in all my photos for the big day made me very anxious and worried.
A few months before my wedding, both problems were practically non existant. My skin was clear (Roaccutane was the drug I used and it worked really well despite the rep about causing depression in some people) and my wedding was like a dream day. For 2 years all was great....
The Crohns disease (being chronic) was never going to stay away forever, and it came back with a vengeance. The drugs I had been using stopped working, and I spent the next few years in and out of hospital. Weight would fall off me, I would bleed so much i would be anaemic, the pain was unbelievable.....but I stayed upbeat. My friends could not believe how well I coped... on the surface. Not wanting to worry them, I kept my fears of the next flare-up to myself. I was terrified of the day all the drugs would be tried and i would only be left with surgery as an option - meaning a colostomy bag for life.
My feelings would go up and down like a kangaroo. One minute I would be playing the joker at work and making others laugh, the next I would be in hospital in pain again and dosed up with morphine with feed tubes sticking out of me. I soldiered on regardless blaming most of the feelings on the drugs. Besides, by now most of my friends had got sick of hearing about my 'dodgy bum' problems - its hardly good conversation. I can see now it was only going to take a big event to wobble my mood into depression again, and I got 4...
In 2010 a colleague of mine started to look very down at work. She was withdrawn and really struggling with something. She was only 21. I decided I could help her out by talking to her about my depression when I noticed she was self harming. I had gone through a period of this before my cognative therapy and so I took her problems on myself. A few months later, worrying about her sudden silence, i went over to her flat to make sure she was ok. She had taken an overdose of paracetomol and I found her looking very ill. I called an ambulance and managed to save her life, but in the months that followed I got far too close in an attempt to help her. She seemed very self distructive and I was constantly picking up the pieces. It strained my relationship with my wife, although we were able to get through. We had got her proffesional help months before but she kept leaning on me and walking away from the proper help. I agreed to distance myself although I worried for her safety....but it was too late.
My Crohns flared up again due to all the stress and this time the drugs stopped working. There was nothing left to try. Surgery seemed imminent. I was put onto steroids to control things...and now my skin is terrible again., and this time the skin seems to be scarring very easily and not healing properly (drugs no doubt). to add to that I lost a dear friend this year, and my wife suffered a miscarriage. To say i feel low would be an understatement. I cant work due to how low I feel - I just want to hide away. Even if I do manage to perk myself up a bit it doesnt last. I have gone back onto Roaccutane to control my skin, but my low mood seems easily influenced by this drug. I look and feel terrible. Whats worse is that of late my thoughts seem to dwell on "Ive had enough now" and dark plans on how to achieve an escape from life itself seem to be more and more common. I dont sleep well and Im really unable to see an end to the bad element to life this time.
Today i have seen the doc and been given anti-depressants and sleeping pills....on top of everything else. Im going to rattle at this rate. As i type this my wife is downstairs with her family, throwing a party for her brother who is emegrating to OZ on Sunday for good. I made an appearance for her and her family, but could not stay in the room for too long as I started feeling worse. They all understand, but I cant help but feel Im not making 'enough effort'. The one thought that keeps me safe at the moment is that I love my wife very much. if I were to do anything silly it would wreck her life...and that I DONT want, but I CAN control.
Im hoping I can turn things around. And soon.
