Recently diagnosed with Crohn's disease

Hey everyone,

I'm Vanessa and I moved to Sydney, Australia 2 years ago.

I have had stomach pains for as long as I can remember and I always used to just brush it off as something not that bad. I would convince myself that the pain was just part of my imagination and I would be embarrassed to show others that I was in pain. I have gone to many doctors over the years and they were always unable to give me a proper diagnosis so doctor trips were a hassle especially because I don't have a car.
Until a couple of months ago I noticed that the stomach pains were becoming unbearable to the point where I couldn't breathe, standing for more than 5 mins was impossible and I couldn't eat anything. My energy was so low that I would feel like crying every morning before work. Waking up was the hardest thing.

I just moved into a new area in Sydney and I decided to give the doctor down the road a try. I went in and gave her the run down and she immediately sent me off for blood tests. When I went back to get the results she told me that I was so low on hemoglobin levels that I am severely anemic and that I was losing blood internally. I was also super low in B12 and other vitamins.

I ended up seeing a gastro specialist who did a scope and endoscopy. When I woke up, the doctor told me that I had over 50 ulcers scattered around my stomach, large and small intestines. My small intestine is so inflamed that he wasn't able to fit the camera inside.
I remember feeling a sense of relief after being diagnosed. Like now I can finally work on stopping this horrid pain!

The doctors have put me on Panafcorte 40mgs and I also have to take Nexuim and supplements daily.

I just want the pain to go away so I can eat a proper meal. I've switched to half my diet either mashed or juiced and I noticed I can still eat things like plain pasta. The worst thing is that I have had to cut down my sugar intake because it hurts my stomach but I used to eat a bag of lollies a day easily so I'm having sugar withdrawals bad!
Keeping a food diary definitely helps but it's annoying that I can't eat any vegetables.

I have had to have about 4 weeks off from work and I am SO nervous about going back now. No one from my work has really any idea of what Crohn's disease is and i feel like they are judging me. They always used to make comments about how skinny I am say "it's because she wants to lose weight." What if they look at me like the 'sick girl' and they would probably just wish that I would quit so they could hire a fit person.

This is all so new to me and I'm scared that I will always be in pain. I hope that they steroids will work ASAP so I can go back to being a normal 23 years old female!

Hoping you feel better soon! The steroids will take a bit to build up in your system, but once they do, you will hopefully feel relief.

Hi and welcome to the forum. Sorry about your diagnose, but as you said, know you know what's wrong and you will be able to feel better. Don't worry about what other people says. Focus on getting better. If you achieve remission your pain will go away. I know you feel scared right now but I will suggest you learn as much as possible about the disease and the ways to manage it. You will find a lot of support in this forum and we will be glad to answer your questions. Just remember is different for everybody. Hopefully your medicine starts working soon. Best of wishes and hugs.

Hi Smoothie and welcome to the forum!

Has your GI suggested any other medications to treat your Crohn's? Steroids are meant to be temporary as taking them long term can cause problems of their own. Also once you start tapering off the steroids or once you're off of them its very possible for your symptoms to return so talk to your GI about a maintenance medication to help keep you in remission and feeling well. Did your GI also talk to you about supplementing the vitamins you're low it?

As for the vegetables, are you removing the skins and seeds then steaming them? Cooked contains less nutrients but there still are some. During a flare I go on the low residue diet so if you wanted you could give it a try to help reduce your symptoms in combination with keeping a food diary.

Keep us posted on how you're doing.

Hey guys,

Thank you so much for all the support and feedback. It is really so nice to know that I am not alone and that I can seek help and advice on here.
My GI isn't back from leave until Monday so I have to wait until then to see him. He did call to give me an update though. We came to the conclusion that the steroids haven't work because the pain hasn't gone away and I am still experiencing other symptoms so I have lowered my dosage to 30mg for a week and then down to 20mg to slowly ween off them. I was really positive that they would work so I am a bit disappointed.
He said that when I go into see him then we will need to discuss stronger treatments or possible surgery.

For the pain, my GP has given me Tramadol 50mg but I find that it doesn't make the pain go away. It just makes my head all sleepy and numb. Is anyone taking painkiller that actually temporarily stops the pain?
It is the worst pain ever and I am sure you are all aware of what I mean. It feels like an animal is trying to claw it's way out of my tummy from the inside and it is constant. I find that in the mornings I will wake up feeling okay with no pain but bloating but the pain really likes to kick in around after lunch time and stays with me until I fall asleep.

After reading a lot more into the disease I have noticed that the major problem with people is the urgency to use that bathroom. This has never been an issue for me. I find that my bowel movements are pretty normal. I would get some diarrhea maybe 2 times a week but i would still be going to the bathroom normally every other day. It's more a pain in my tummy thing for me. I can feel really sore cramping pains in my lower abdomen and it makes me throw up and then cramping, squeezing, ripping pains in my stomach. So bad to the point where if someone is talking to me while the pain is there, I cannot hear one word they have said. My mind is just focused on the pain. And then EVERYTIME after I get pain I always feel extremely exhausted like it has taken so much out of me... Is anybody else experiencing Crohn's like this? I get that every case if different though which is probably the most annoying thing about the disease because there is no black and white paper telling you what to eat and what to not eat etc.

It scares me to think that I will still need to attempt to live a normal life while experiencing a flare. I am in a really bad flare at the moment and I just feel like there is nothing that I can do. Everything requires too much energy but then if I just sit at home all day I get bored and depressed and feel like I'm worthless. How do people afford all their medical expenses when they can't even get up in the morning to go to work? I can't ask my parents for money because they don't have any. I'm a 23 year old female who lives in Sydney with my boyfriend of almost 3 years and he has no money either. I still need to pay rent each month and all my other bills. It's really hard to get my head around everything. And then I also need to try and manage my stress levels but how is that possible when all this stuff is going on?


So sorry for the rant. This is all very new to me and I am going through a whole range of emotions.

I had a look into the low residue diet and it seems alright. How do you find having dairy though? I had the smallest amount of ice cream the other day and oh my GOODNESS I was in pain for the whole day, night and next day. I really don't want to cut dairy out of my diet because I love cheese. Also how are you with sugar? Can you still eat it?

Your symptoms sound similar to a partial obstruction which aren't fun (many of us have gone through those or are currently dealing with them). If that is the case then removing any foods from your diet that increase your symptoms will help a lot with the pain at least. That doesn't mean you can't add them back to your diet once you're in remission. Certain cheeses like aged ones (parmesan etc), have a lot less lactose in them and might be ok to at least try. As for sugar, for me it causes more problems during a flare and does feed bad bacteria so I try to avoid it during flares.

As for pain meds, I haven't taken any opiates or synthetics that that actually reduce the pain. For me they just make me care less about it and tend to put me to sleep (I don't mind the sleep though and sometimes they are better than nothing).

As for your financial issues in Sydney, I don't know what options are available to you out there so I'm going to tag DustyKat to see if she might know of anything. As for the stress, try to do your best. If there are any small things that aren't a high priority like house chores etc, then maybe try to reduce your work load in those departments.

Hi Vanessa,

I’m so sorry to hear of all you are going through. :ghug:

My two kids have ileal disease so for them, pre op, diarrhoea was never an issue. I know it is usually one of the first things that is associated with Crohn’s but you will find many people here don’t suffer with diarrhoea.

The medication my children were prescribed for abdo pain was Endone. For them it worked well. When your GI is back get in contact with him and see if he can prescribe something else for you.

I assume you are a permanent resident? If so then Centrelink is the place to go. When you are employed and out of leave to cover time off sick it may be possible to obtain Sickness Allowance:

http://www.humanservices.gov.au/customer/services/centrelink/sickness-allowance

The page, and links, will give you all the information you need. You will see that if you aren’t entitled to sickness allowance, due to say not being able to return to work, then it may open other options like Newstart Allowance.
The other thing is if you are eligible for one of these allowances it automatically unlocks other benefits like a health care card, rent assistance and so on depending on what allowance you may be entitled to.

Good luck and warm wishes!

Dusty. xxx

Gouda is lactose free, and very yummy. Same with goat cheeses I can handle dairy with no problems, personally, but I know that it's often not the case with others The hardest thing is figuring out which foods cause the reaction

Welcome. Wishing you the best.

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