Crohn's Disease Forum » Your Story » Relapsing but no one is listening.

12-11-2017, 05:38 PM   #1
Cornelia's Avatar
Join Date: Dec 2017
Relapsing but no one is listening.


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
12-11-2017, 06:31 PM   #2
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ronroush7's Avatar
Join Date: Oct 2013
Location: vienna, Virginia

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Hi. As far as the weight is concerned you might try Boost Complete. Everyone is different but I can't have anything with caffeine in it including chocolate. I would consider a second opinion. Keep fighting for answers.
Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
12-11-2017, 11:32 PM   #3
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Keep talking to the doctors or get a 2nd opinion. You know your own body! Look at your iron, b12 levels and vitamin D in your blood tests! Check your WBC white blood count ... keep asking ... be confident and donít let doctors make you feel like itís in your head. Something is wrong and you need stool samples etc check out nutrition facts. org you may want to keep a good diary. Chocolate triggers a flare for me. Hope this helps!
12-12-2017, 05:01 PM   #4
Cornelia's Avatar
Join Date: Dec 2017

Thank you for your response

I think i'm going to call my doctors and just keep pushing. Also thank you in relation the the chocolate, it sucks but in a way i'm glad to know its not just me.

All the best x

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