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Every year at this time I feel over come with emotions. I was diagnosed with Crohn's/ Colitis eight years ago this year on febuary fourteenth yes valentines day Ironic?. I am what my dr calls an undetermined case not sure if its all crohns or all colitis or both and he thinks they will proabably never Know helpful i know. I have been on everything from colozol, pentasa to prednisone for 2 years. Then this year I started humira injects and for the first time in seven years I was in remission for 3 short months It felt to good to be true then it stopped working. Then my dr started me on remicade... the first one worked but not as good as humira. Then it was time for my second infusion and I ended up in the hospital that night my throat started to close up, so now I get my infusions at a slower pace and they seem to be working I go every six weeks now. Im just afraid it will stop working all together then what? I am only 21 and I feel alone alot. No matter how much you talk to people unless they have it it is hard to relate to them. Lately I have felt angry and cant get out of this funk I seem to be in.

 Reply posted for Stephania1388.

get involved in ccfa and do the walk in your area,these people understand

 Reply posted for Stephania1388.

Try not eating wheat/gluten for a couple weeks. I am not saying it will cure your Crohns but many people with Colitis/Crohns also have an intollerence to gluten.  Sometimes the biopsy that they do for this will show as negative (per my GI doctor whom I love) but one can still be gluten intollerant.  It is worth a try for you.   Gluten free products are available at most grocery stores, health good stores and can be purchase online.  Experiment with which ones taste best cuz some taste pretty bad.  It has really helped with my cramping, bloating , and stomach upset/pain.

 Reply posted for Stephania1388.

I hear you. You are not alone. It is so frustrating even when you are feeling good because you are always waiting for that next flare. Not many people understand this. As far as the UC vs Chron's diagnosis, I was diagnosed with UC at age 30. I am now 43 and was diagnosed with Crohn's a little less than 2 years ago. I have not been the same emotionally or physically since. UC tends to be uniform in nature. (I'm also an RN so sorry if I'm talking "nurse" talk sometimes) For example, UC starts in the rectum and works its way up in a uniform pattern. Crohn's can literally be anywhere from you lips to your.....butt. (trying to be polite!) For example, you can have inflammation in you small intestine and large instesting, 2 very different areas at the same time. The presence of what is called Granuloma tissue on biopsy is much more indicative of Crohn's. Either way, both diseases are lumped into what the call inflammatory bowel disease, neither of which is any fun at all! I wish you the best Stephania. I love your name buy the way. My daughters name is Stephanie and as you probably already know, Stephania is Stephanie in Italian. Hang in there. Enjoy the times that you are well. Put those fears on the "back burner". Easier said than done, I know. Enjoy life as much as possible!     

 Reply posted for Lizzies Mom.

Thank you so much for the kind words and for even responding to my last post which was basically me just venting/ complaining. I wish the best for you and your daughter I hope she is well and in remission. Its nice to be able to connect with people who understand what your going through so thank you again for listening and responding!

Stephanie :)

 Reply posted for Stephania1388.

I know how easy it is to feel "overwhelmed".   I am the mom of a CD patient (she's 10 now, was dx @4).  You can rest assured that the people on this site can relate (100%)!!

You are a beautiful young girl in your prime.   Much of this disease, whether CD or UC, is fueled by stress and worry.   Try your best (I know it isn't easy)  to change your mindset that the current infusions are working and you have regained your life back!   (Stressing over it working and potential of not working isn't good for your mind, spririt or gut).  

Pay close attention to what you feed your gut and always feel free to ask for help when you have a question/concern.  Lots of people here are always willing to share their personal experiences, thoughts and often times prayers.

Be well.

Lizzies Mom