Crohn's Disease Forum » Your Story » Unsure and Confused

08-28-2015, 12:55 PM   #1
Join Date: Aug 2015
Unsure and Confused


I am 22 years old and I have been diagnosed with Crohn's disease last week.
I have to say the past couple of months have been hell. I've dropped 2 stone in under 3 months and I can never seem to finish anything I being to eat, and in the amazing instance that I can finish a meal I am overcome with crippling pain which often leaves me feeling sick and drowsy.
I have been put on some steroid medication and so far I have to say it has had no effect, if anything the pain is worse and it has now come to the point where I get a sudden spike of pain so sever it has even woken me up in the dead of night.

I'm not coping well with the pain and I've been told I am unable to take pain relief due to the medication I am on for the next 8 weeks.
I really don't know what to do, I scared to eat certain things for fear of the pain but then I get so hungry the pain comes anyway. I feel like I can't win if I eat there is pain and if I don't there is pain.

Please does anyone have any advice or tips on how I can cope better?
I have never spoken about this to anyone for fear it won't be taken seriously and I really hope I can find some form of support and I feel I can achieve this here.

Any help would be an improvement,

Thank you! 😊 xx
08-28-2015, 01:51 PM   #2
Senior Member
Madhu's Avatar
Join Date: Jul 2015
Location: Texas

My Support Groups:
Hi Jay

Sorry you are going through this. What did your GI say during diagnosis? Did you speak about the course of treatment? Like Remicade/Humira? Did they do scopes for diagnosis?

As for diet, you really have to choose something which agrees with you. Its different for every person. But most people avoid dairy since it never agrees with most Crohnies. Cook all veggies fully before eating. Nothing raw and no leafy vegetables is what my husband's GI said. I hope you feel better soon.
Hubby dx with Crohn's in Feb 2015, in remission from Feb 2016 to Feb 2017.
2 anal fistulas (setons placed in June 2015 and removed in Feb 2016)

Mild flare in Mar 2017. Remicade schedule adjusted

Current Meds - Remicade 10mg/kg
08-28-2015, 04:43 PM   #3
Forum Monitor
Honey's Avatar
Join Date: Mar 2013
Location: United Kingdom
Hi there and welcome, sorry to hear you are in pain. It takes time to get the right meds that work for you. I was on different meds until I eventually went on to Remicade infusions as nothing else worked. I am well and currently on Prednisolone steroids. I hope you feel better soon. Let me know how you are
08-29-2015, 12:16 AM   #4
Senior Member
Join Date: Nov 2014

My Support Groups:
What about EEN? Probably you could ask your doc what he thinks about it, you would get all the nutrients but your lower small intestines and the large intestine have to be working as less as possible, everything will be absorbed in the upper small intestine, so the rest of it can heal easier. I felt some relief after a few days and I felt A LOT better while doing that.
I would not recommend it for long term therapy but if I were in your situation I would ask my GI about that.
For long term use immune suppressants are recommended by most of the doctors.

But if you don't feel improvement of your symptoms within days I would see the GI again, maybe the dose should be administered.
Don't hesitate to get in contact with your doc when you feel unwell.

When my pain gets stronger I take a cool pack for my terminal ileum. Do you know where the inflammation is located?
Crohn's Disease: diagnosed 2014 (at 24), symptoms for 10 years now
Enteropathic Arthritis, Sacroliitis, Osteopenia

Stelara; Uceris; Lansoprazole; Domperidone.

Previously: Remicade, Humira, Simponi, Azathioprine, Methotrexate, Sulfasalazine, Entocort, Uceris, Prednisolone, TPN, EEN, different alternative treatments.
08-30-2015, 04:40 PM   #5
David's Avatar
Join Date: Feb 2006
Location: Naples, Florida
Welcome to the community. I wanted to echo what Charlotte said. Look into EEN (Exclusive Enteral Nutrition).

We're here for you.
It's good to be back
08-30-2015, 11:41 PM   #6
Senior Member
Justanothercp's Avatar
Join Date: Aug 2013
Location: Sacramento

My Support Groups:
Try a liquid diet for a few days. You can research it on this site to get ideas.
08-31-2015, 02:20 AM   #7
Join Date: Aug 2015
Location: Cork, Ireland

My Support Groups:
I had a serious flare while in my second year of university. I didn't eat anything more than yoghurt for three months just to last until exams and complete them. I walked out of my last exam and fainted on the bus home. I spent the next 7 months in hospital. Still I went back to do my final year which I wouldn't have if I had two to do instead of one. Funny how we find a positive in scary things. Anyway, yoghurt is your friend.

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