- Joined
- Dec 11, 2017
- Messages
- 2
Hello.
First and foremost I have been suffering with Crohn's disease for 2 years now. It's been an uphill battle that's for sure.
A bit of background I was diagnosed at 22, I was in my prime. I had just graduated University with a bachelors degree in contemporary dance. I trained everyday and was at the peek of my physical fitness. I suddenly started loosing weight and the pain wracked my body on a daily basis. The fatigue hit me like train and slowly my appetite began to disappear.
My cousin also suffers with Crohn's but the doctors refused to see a connection and it was a further year when I was hospitalised that they took my claims seriously and I was given the diagnosis after test after test.
Since my diagnosis I have had only one flare up which landed me in hospital for one night. My treatment was changed to azathioprine which I take daily along with a 2 weekly dose of Humira via injection. Once again everything was going fine, until July 2017.
Personal circumstances resulted in me being extremely stressed which I think my have kick started a flare up. I've been loosing weight for the past few months and being unable to maintain any.
Another issues, which I would very interested to see if anyone else has suffered similar but for the past few months I have been suffering with extreme ulcer like pain at the back of my mouth and at the bottom of the inside of my cheeks. Now when I move my tongue I feel the pain, some days its okay some days its very bad.
Another thing in relation to this is that I can's seem to eat chocolate. Yes. CHOCOLATE! For whatever reason my mouth BURNS and i feel my cheeks swelling somewhat. All my doctors are unsure of the cause of this and my dentist advised it could be Crohn's related? I have mentioned this to my IBD team but they have no answers for it? Curious as to if anyone suffers from this or if this is a personal issue to investigate?
Anyway, back to the main issue here. I have given blood and stool samples which have both come back fine (although slightly low iron levels). I have had an endoscopy which also came back fine and I have been put on steroids (not my usual prednisone) to stop any abdominal pain and ease the symptoms.
I am going to the toilet roughly 3 times a day and this evening a lot and I mean a LOT of blood was in my stool. Understandably this has me worried. I feel like I'm not being taken seriously as all my tests are coming back as normal but I know something is not right and these steroids are not working.
I feel I just needed a rant, apologises if you've been caught in the cross fire but I would be very greatful for some words of wisdom or even advice on my next steps.
Thank you for your time to read a part of my story. A part I feel is never really understood.
Cornelia x
First and foremost I have been suffering with Crohn's disease for 2 years now. It's been an uphill battle that's for sure.
A bit of background I was diagnosed at 22, I was in my prime. I had just graduated University with a bachelors degree in contemporary dance. I trained everyday and was at the peek of my physical fitness. I suddenly started loosing weight and the pain wracked my body on a daily basis. The fatigue hit me like train and slowly my appetite began to disappear.
My cousin also suffers with Crohn's but the doctors refused to see a connection and it was a further year when I was hospitalised that they took my claims seriously and I was given the diagnosis after test after test.
Since my diagnosis I have had only one flare up which landed me in hospital for one night. My treatment was changed to azathioprine which I take daily along with a 2 weekly dose of Humira via injection. Once again everything was going fine, until July 2017.
Personal circumstances resulted in me being extremely stressed which I think my have kick started a flare up. I've been loosing weight for the past few months and being unable to maintain any.
Another issues, which I would very interested to see if anyone else has suffered similar but for the past few months I have been suffering with extreme ulcer like pain at the back of my mouth and at the bottom of the inside of my cheeks. Now when I move my tongue I feel the pain, some days its okay some days its very bad.
Another thing in relation to this is that I can's seem to eat chocolate. Yes. CHOCOLATE! For whatever reason my mouth BURNS and i feel my cheeks swelling somewhat. All my doctors are unsure of the cause of this and my dentist advised it could be Crohn's related? I have mentioned this to my IBD team but they have no answers for it? Curious as to if anyone suffers from this or if this is a personal issue to investigate?
Anyway, back to the main issue here. I have given blood and stool samples which have both come back fine (although slightly low iron levels). I have had an endoscopy which also came back fine and I have been put on steroids (not my usual prednisone) to stop any abdominal pain and ease the symptoms.
I am going to the toilet roughly 3 times a day and this evening a lot and I mean a LOT of blood was in my stool. Understandably this has me worried. I feel like I'm not being taken seriously as all my tests are coming back as normal but I know something is not right and these steroids are not working.
I feel I just needed a rant, apologises if you've been caught in the cross fire but I would be very greatful for some words of wisdom or even advice on my next steps.
Thank you for your time to read a part of my story. A part I feel is never really understood.
Cornelia x
