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10 years with Crohn's in April

Hey guys,

I'm new to the forums here. I was diagnosed in 2004 when I was 14, after suffering from stomach cramps for 3 months, getting exhausted easily etc. Anyway I got woken up one day to go to school and I couldn't sit up due to my stomach pains being so bad.

I went to the doctors and recommended I go to the hospital. Once I got there I had 7 doctors examine me...6 said it was appendicitis and the other said it was Crohn's...obviously they cut me open expecting to easily take my appendix. However my large intestine was so inflamed they couldn't get to it. 3 weeks later on the 22nd April 2004 I had a colonoscopy, and it was confirmed I had Crohn's Disease.

I went on to miss the next 8 weeks off school as they determine which medication was right for me, and I had to gain weight, as I was only 5 and a half stone at 14, which shot up to 12 stone in 6 weeks due to the steroids, i was eating like 20 meals a day...literally.

When I first got diagnosed I was on medication in liquid form, as I hadn't learnt how to swallow tablets yet. I had to teach myself to swallow tablets but swallowing smarties :ylol:

As the years went by in school I was experiencing a lot of blood in my bowel movements, which I ignored and I do regret. I ignored it because I had exams coming up, and I wanted to focus on my grades instead of my health...well that was my excuse, I was just young and scared of what the doctor would say.

After school finished, I went to college, which I couldn't really focus on because, I had developed anxiety in my Crohn's Disease. Every 15 minutes I would go to the toilet, because I was worried I'd have to need to go, so I thought It would be super safe going every 15 minutes. Obviously I missed a lot of time in my lessons, and I didn't do too great. I think it was mainly because I was worried what people thought off me and how they would accept me.

When I was 17 I got my first job, and I do believe this was a turning point for me, I met some great guys there where I would go on to work for 2 and a half years, however I never told em about my Crohn's Disease because I was still too embarrassed about what other people would think (However I still see these guys now today, and they know everything). When I was working aswell I couldn't keep track of the going to the toilet every 15 minutes thing, because I was too busy working and I slowly developed more confidence. I became more social and was more outgoing. I think this is where I really developed some more ambition in my life, because the 3 years before that, I never wanted to leave the house, but all of a sudden I wanted more.

At the age of 19, after my time at my first job, I went onto work at a holiday resort, and move away from my family and friends and develop a new life on my own. I was only there for 4 months, as I didn't feel I fitted in there, and my going to the toilet all the time got on some peoples nerves, I think they struggled to accept my condition. I used to work in a bar, and like anyone with Crohn's I would have bad days with it. Which wouldn't be the best time when your stood behind a bar with hundreds of people to serve.

I mainly left the job, because I felt a little rejected, as people became more and more frustrated with my Crohn's. It did knock my confidence.

I came back home and moved back in with my family and friends and I decided to give jobs with retail a chance. This turned out to be my worst job ever, which I worked there for 2 years. People again frustrated with how often I went to the toilet, got annoyed. However one positive thing from my time there, I'd develop the confidence not to care of what anyone thought of me anymore. Some people would come up and say to me "you don't look sick" I'd come back with "you don't look stupid, but looks can be deceiving eh?". However in the time I was there I was worried about my employers, they were rubbish at managing my condition as they were a lot like everyone else, as times I would be off work due to a bad day of Crohn's they would say I'm faking it, even after I'd get a doctors note. I'd take anti-diarrhea tablets to keep me from going to the toilet. I asked my doctor and these aren't great things to regularly take. After 2 years in the job I quit, but it turned out I had developed an abscess in process of trying to prevent myself of going to the toilet. I had an MRI Scan which confirmed my small and large intestine had developed a hole between each other and connected. At the moment this has been treated with azathroprine. Also though, last year, I got diagnosed with IBS while all this was being figured out.

When I got to 22 I decided I had to change my career path. I did an apprenticeship in business just so I can stay in an office environment and go to the toilet whenever I want. I did this all of 2013 and now, I have passed my apprenticeship and I now have a job in office environment, where nobody seems to even care how often I go to the toilet. It's great!

Even in the almost the last 10 years with Crohn's I've managed to live out my child hood dream! Should it be for 1 day! I played on my football teams home ground for a football match when I was 22.

I'm now 23, I suffer from IBS and Crohn's but I do feel I've made the right move job wise for my health...even though it's taken me almost 7 years.

Anyway that's my story...sorry if it dragged on abit haha.
 

David

Co-Founder
Location
Naples, Florida
Hey there and welcome to the community. A few questions:

1. Where is the abscess located?

2. Am I understanding correctly that there is a perforation in your intestine and they're treating that with azathioprine?

3. What medications are you on?

All my best to you.
 
Hi guys, thanks for the warm welcome.

David, my abscess was located from the bit where the small and large intestine connects. I am currently on azathiraprine, ozalazine, and take ensures everyday. Yes david, they are treating my abscess with azathiraprine.
 

David

Co-Founder
Location
Naples, Florida
Hi shellyboy. Thanks for the clarification. I'm going to tag Aussie to this thread. I trust their opinion a great deal and I'm curious what their thought regarding treating an abscess in the ileocecal area with azathioprine is.

While we're waiting for Aussie, have your doctors put forth the idea of surgery to you? Did they put you on any antibiotics or attempt to drain the abscess?
 
The doctors did put idea of surgery across, however they said due to the situation, they said they'd like to let me choose.

I could choose azathorprine, remidine (sp?), Surgery or do nothing...obviously I'm not gonna do that last one, but I was gonna go on remidine (sp?) after i conslulted with my doctor though he said that is the "big gun" they prefer to use to avoid surgery, but said if it can stop working like azathorprine, then I've lost my "big gun". So I went for azathorprine...
 
Hi David and Shellyboy.

Shellyboy, if you had a significant abscess, the ideal treatment would be antibiotics, drainage +/- surgery. However, given the options you were given, I would imagine you've had a previous perforation (which develops into a walled off abscess on the outside of the bowel, which is quite sticky to nearby bowel, and will commonly attach to other areas - ie. bowel, bladder, abdominal wall - over time, the abscess will fistulate through the area it has attached to, causing a fistula), hence the fistula you have now. This is potentially worsening your diarrhoea (as stool bypasses a length of bowel by going through the fistula).

Unfortunately internal fistula (unlike perianal fistula) do very poorly with medical therapy.

Just a few quick suggestions:

1. Talk to your GI about how much bowel is between the two openings of your (entero-colic) fistula. Just because you have an internal fistula, doesn't mean you have to act upon it right now. If there is only a tiny amount of bowel being bypassed, it is unlikely driving any diarrhoa, however, if there is a large gap, then is will almost certainly be causing a degree of your diarrhoeal symptoms and the best approach would be surgery.

2. Given that you developed Crohns at a young age and you already have fistulising Crohns (as opposed to inflammatory or stricturing, which are the other two phenotypes), this would put you in a worse prognostic group. Evidence does point to altering the Crohns disease course if you commence biologic therapy soon enough. So, rather than "keeping Remicade up your sleeve", you might be better hitting the disease with everything and hoping to change the course - so Infliximab and Azathioprine (doubt olsalazine is adding very much).

3. Also, if you do proceed with surgery, being on biologic therapy is the best way to minimise Crohns recurrence.

Best wishes.
 
Hi Aussie,

Sorry its taken so long to get back to you i've been super busy.

If I'm honest mate, I'm not really sure what the deal is. In December 2012 I had an MRI Scan confirming I had an abscess. The put me on azathorprine to deal with the issue, and after September's Colonoscopy last year, my doctor said my bowels were in good condition, and also I feel great...I'm just a little worried about going to my GP saying "check again" when I feel fine :/
 
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