Kind of in denial

[RockabilLeah]

Hello folks!

I'll try to keep this short and sweet My name is Leah and I'm 23. I was disagnosed with Crohn's on Tuesday via colonoscopy. It seems I have some ulcers and polyps along with a lot of inflammation in my ileum. I've been having horrible abdominal pain for about 5 months now and lately I've been getting a few small cankers in my mouth which has me a bit paranoid that it's being caused by this also. I was finally able to see a physican for it and this was the diagnosis that he gave me- tentatively since my biopsies still need to come back and he wants to have another consultation with me in a few weeks. Other than that I haven't been given any information at all. He just came in after the procedure- as I'm high as a kite mind you- and goes "Found some ulcers, looks like mild to moderate Crohn's, giving you Pentasa, see you in a few weeks" and that was it.

I have to say though that besides a lot of constipation and, at times, debilitating abdominal cramping I haven't experienced most of the typical symptoms that one would expect with a disease like Crohns. I'm sort of in denial and hoping that the doctor will come back and say that there has been a mistake and it's only IBS. Sad but true. I have a friend who has Crohn's and she had a total iliostomy and so I guess I'm afraid that could be me. I'm currently on Pentasa and I was wondering 2 questions for the moment:

Is anyone else on this medication and how are you responding to it?

Is anyone else as wigged out and in denial as I am? haha

Thanks everyone I appreciate any comments or advice you can give me!

 

[vonfunk]

I think everyone goes through denial at some point.

Lots of people here are on Pentasa and and it's various similar forms (it has lots of names).

Some people do alright on Pentasa. There are people, like myself, where it does almost nothing. I need to be on steroids all the time.

As far you wanting it to be a mistake and actually have IBS. IBS can still be pretty bad, I have friends who suffer a great deal. At least with IBD there are a variety of medical options that can keep the inflammation down, IBS doesn't have near the amount of options. Either way, IBS, IBD, both are going to suck, but I've never heard of some one with IBS going into remission.

 

[Astra]

Hi Leah
and welcome

When I was diagnosed 5 years ago, but symptomatic for 15 years! I was given Pentasa and it helped until this year when I had a massive flare up and got infected and in hospital for a week. This is because, I'm stupid, and was complacent, thought the Crohns had gone away! So I stopped my Pentasa. And I ended up in A&E.
I've been on Prednisolone for 11 months, finished now and back into remission. Pentasa is my only med now again.
See how you get on with the Pentasa, maybe it's all you need for now.
There are so many degrees of this disease, just cos your friend had an op, doesn't mean you will too! Honest!
Have a scoot round the forum, read up on meds and diet etc, and any questions, fire away!
lotsa luv
Joan xxx

 

[aliciars]

I don't know about your meds. But I completely understand being wigged out and in denial. I'm going to see a different specialist in Feb and I'm still hoping that maybe she'll say my Crohn's dx is wrong! This disease sucks, no getting around it. But I think more people find meds that work for them than don't. So hopefully you will be on a treatment program that works for you quickly.
Also, don't be too upset with your doc. He knows you are high as a kite after the scope so he doesn't want to go into details with you for that very reason. I don't even remember seeing my doc after my scopes! Also, Cleveland is well known as one of the best treatment areas in the midwest for Crohn's and Colitis, so you are in an area to get great treatment.
Sorry for your diagnosis. Don't be afraid to cry and get mad about it - all in the same 10 minutes. Find a support system.

 

[Nyx]

Pentasa didn't work for me, but that doesn't mean it won't work for you. You're very newly diagnosed, and that's not a bad thing! Just make sure that you have a good doctor and that you don't ignore any symptoms no matter how minor (that was my downfall...so to speak...I ignored constipation for 8 days and wound up with my colostomy, which turned out to the best thing ever, but that's another story...lol).

Welcome to the forum, lots of support and information here..

 

[Sandy]

Hi, Leah,

I hope the Pentasa works for you. But if it doesn't, you may have to try something stronger. Sometimes you need something strong to get you into remission (i.e., free of symptoms), and then taper off to a milder drug to keep you in remission.

Alas, if you do have Crohn's, it may be a lifetime relationship. But you CAN lead a full life with it. I have for 4 and a half decades now. It's been a rocky life sometimes, but whose life isn't?

Best of luck to you -- and Happy New Year!

Sandy

Dx 1963
Now on:
Asacol
Azathioprine
Rowasa
Budesonide (sprinkled lightly in Rowasa, shaken, not stirred)
Folic acid