Someone whos gone through it too

[Emma A]

My name is Emma I have been diagnosed with Crohns disease in February of last year im 24years old. its been a hard year to be honest a little frustrating more than anything because your going through something that you have never even heard of before and didnt know even existed and the whole in denial thing that i wouldnt happen to me and the doctors are wrong.
i am on Pentasa 4000mg a day. & ive been constantly sick throughout, feeling worse than i was before i was diagnosed. cramps, bloody stool and a constant bloating that never seems to go away.

at the mo i am worse for wear, i cant even sleep right, and the my back is in agony. i'm starting to vomit too. i know theres probably not much anyone can do and to be honest theres not one person i know who has CD that can give me some sort of information or even a your gonna be ok attitude. Familys great but can be very ignorant towards it and have little understanding of how much pain im actually in that i just bottle it up and say nothing and tend to just make do.

at first they were supportive but its as if they've gotten use to the fact im not well and i haven't.

i don't know if i have any options or if there is anyone out there that can give me some sort of pointers as to get my health back on track without the dreaded steroids id really appreciate it. :confused2:

the luck of the irish didnt really apply to me so i think i gotta make my own!

thanks a mil
Emma

 

[SarahD]

Hi Emma,

I'm sorry to hear of your struggles, Crohn's can be such a cruel disease - made even more difficult by the fact that we may look healthy on the outside even if we're falling apart on the inside, so people don't always realise just how much we're suffering.

Could you speak to your consultant or GP about how you're feeling? Pentasa is a weak drug and isn't always enough to keep Crohn's under good control. There are several other Crohn's medications available and you might find that switching to one of these gives you your life back. Azathioprine or 6MP are often the next step up from mesalazine based drugs like Pentasa. Some people also find that diet plays a huge role in their disease, so you might find it helpful to keep a food and symptom diary to see if you can identify any triggers.

Hope that helps,

Sarah

 

[Emma A]

Hi Sarah,

thanks for getting back to me, i have tried the food diary but it seems that all food is disagreeing with me because im in a constant flare up. i get a burning sensation in my stomach too but that could be acid! i'll take all you have said on board, thanks so much its nice to know someone knows what im feeling like.

Emma

 

[Crohn's gal since 1989]

I totally understand Emma, I was 22 in University when I got my diagnosis of CD. At that time there was no internet (yes I'm that old!), no one I knew had Crohn's and the first to GI's I had did not adequately explain my disease to me. I didn't understand how Crohn's was going to affect my life. Since I didn't understand my illness, my brother and parents were not particularly sympathetic. I overall look well, and have never dropped alarming amounts of weight like some of our fellow Crohnies here. Because I never looked sick I spent a lot of time in denial and my family shamed me about my illness complaining about bathroom odours/time spent in washroom, etc. like we can stop this!

Thankfully I met and married a man who's father is a Crohnie too. My sister in law is a doctor, so my in-laws all understand how severe Crohn's can be, and my husband is extremely supportive. For the past 10 years I have had an Awesome GI who explains everything and since I have had the worst Crohn's year ever (3hospital trips and a resection surgery). Even my family is more supportive now! Hopefully you don't have to get as sick as I've been to get noticed, but remember your Crohn's family is supportive and just a computer click away!

 

[Emma A]

Hey Bonnie (crohns gal since 1989),

thank you so much for taking the time to write to me, sounds like you were pretty much in the same boat as me!
seems like you have been through lots and its really nice to have someone i can relate to.
i'm real happy you have found someone who completely understands you and loves you for who you are. i have been in a relationship the past 4 years and were great but i know me being sick has taken its toll, theres always a conversation about me being sick and i cant help but feel completely unconfident. that he could find someone not sick and would'nt have to put up with it. (insert pity button here ) but he always tells me how beautiful i am and how much he loves me and spoils me rotten too. he's the best and so supportive. i just dont want crohns to ruin that for me either.

and i think i should change my GI, kinda getting no answers and really hard to make an appointment. (hes an old fart anyway :lol: )

thanks for making me feel better

Emma

 

[Crohn's gal since 1989]

Your welcome Emma! Although I think my story is slightly different from yours, just because when I got diagnosed there was no internet, so I couldn't just google Crohn's and learn about my illness so I was unable to educate my family. Since my last flare in May I have learned more about Crohn's then I had in my more then 20 years with the disease. The one very surprising thing I learned was that a lot of symptoms I was having which I attributed to reaching my 40's were in fact my Crohn's acting up. Don't give up on your family. Even as unsympathetic as my family was, they were all there for me when my Crohn's put me in the hospital 3 times this year.

You might want to remind your family that Crohn's can be fatal if not taken seriously, perhaps that will wake them up. This time around I bought a book about Crohn's disease and I keep it in my bathroom. I suggested to my husband that he read it while in the washroom so that he can become more aware. I have shown my parents animated videos that explain what Crohn's is and how our digestive track looks different from a normal one. That really woke them up without being too graphic.

 

[Emma A]

Hi Bonnie,

Thank a mil for your post!! i think im gonna scare the life out of them with some grueling images that'll teach them :rof:
i like your idea of the book too, youve been so great!!

 

[Careyearl]

This is a tough disease and can take time to figure out the best medications. I'm also diabetic on insulin and that took a long time to figure out that worked for me. Got that in control and then wham got diagnosed with crohns in June. Right now for med for my crohns I am on humira a shot every two weeks and 7.5 mg of methotrexate. Still wasn't getting better feeling like crap so Dr had to put me on prednisone for the next month to try and get the inflammation under control. Not happy as this will affect my blood sugars but hopefully this will help me to feel better. Tired of everyone saying you look good but inside I feel like crap, tired all the time and having a heck of a time figuring out what foods I can eat to satisfy both my crohns and diabetes. Thankfully I have a supportive family, husband and co-workers. When I first got crohns I got the book crohns and uc for dummies. Go figure but must say it helped me to understand the disease and able to explain to my supportive circle.