Remission for 15 years - possible flare??

[bexf1986]

Hi

I was diagnosed with Crohn's when i was 7. Apparantly that's quite rare but all i ever really remember is living with this disease. I eventually had surgery when i was 9 which after 2 years of steroids, liquid diets (AL110) and other medication, put me straight into remission. I have stayed there ever since, and am now 24.

I live with the fact that i go to the toilet a few more times than the ave person ,and sometimes need to go quite desperately and have vitamin b12 injections. But they are the only side effects i live with.

Over the past few months i developed a skin rash on both my arms and my legs. I have had eczema in the past and believed it was that but nothing has made it go away. It has led to lots of small dots that bleed which have scarred. My eyes have hurt and i have had to switch to wearing glasses rather than the usual contacts... and now i have bleeding after going to the toilet. A mixture of fresh mainly. But looking at this altogether makes me think this is a flare up??

I was only 7 when i was diagnosed, so a doctor has never sat me down and talked frankly to me, and my mum only told me what i needed to know. Check ups have involved me saying, everything seems fine, i have no pain, and im sent on my way. So really, i get the info from the internet.

Am going to the doctors tomorrow, just thought i would post this and see if anyone can relate to me at all??

 

[Jennifer]

Hi there!

It is less common for children to be diagnosed than for adults. I was 9 when I was diagnosed and had my surgery 11 years ago. Ever since my surgery I've been in remission which is not uncommon. I was told before my surgery that its possible I could go 10 years of more without a flare. Here I am being in the "or more" category.

As far as the red bumps or rashes, some of us get them. It could be Pyoderma gangrenosum, Erythema nodosum or Necrotizing small vessel vasculitis. You could even check into bed bugs if you don't think that's it.

For me, since I've been in remission for so long, bleeding would mean that I'm having a flare (but who knows, could just be a hemorrhoid). You'll probably have a scope done very soon to see where its coming from.

I can definitely relate to you and will gladly answer anymore questions or concerns.

 

[Silvermoon]

My brother has been in remission for 12 years after his one and only surgery, and unfortunately started having symptoms here about the last 3 months. Finally talked him into going for a colonoscopy about a month ago, and sure enough, he is inflamed....

I think those of us that were diagnosed as children 15+ years ago, unless we have had problems all our lives, really don't know much about the disease...even though we "have" it....

Hopefully things are going well, or at least as well as can be expected. Let us know how you are faring.

 

[Jerman]

Hi bex and welcome to the forum! Sorry to hear that you are not feeling well. I would advise you to get to a GI as soon as you are able. the one thing that i have learned about this family of gut conditions is that there are different signs and symptoms at times for people with identical diagnoses. I had been diagnosed at 20 with colitis and had to miss my dream of fighting in the golden gloves tournament. No problems except an increase in bathroom time during stressful periods but no need for medical intervention. 22 years later, I have been diagnosed then undiagnosed with both crohns and colitis, have had every test known to boston hosp docs and am still without a diagnosis after nearly two years of brutal symptoms.

find a doc you are comfortable with and seek medical intervention early to ease your pain and worries.. good luck and feel free to call on us for support, this is a truly wonderful forum.:goodluck:

 

[Tan]

Hi Bex... I have to agree with Jerman, everyone is different with what symptoms they get with this disease but if you are starting to experience problems esp bleeding then I would def be getting checked out.. the sooner they get onto the flare the better in the long run you will be. Hopefully you can kick it quick and get yourself back into remission. Good luck and welcome to the forum.

P.S. thats so awesome you made 15 years in remission fingers cross when you get back there you last another 15 years!!