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Confused and Sick Looking for Answers

Wed, November 07, 2018 2:01 PM

Hi, I am 33 and was diagnosed with Crohn’s Colitis in June 2018. GI put me on infliximab/Inflectra infusions. Bloodwork levels of Inflectra were low, so my doc switched the frequency to every 5wks.

Even at 5wks, I still have so many symptoms - diarrhea, urgency, and pain. On bad days, I have cramping in my upper left abdomen and just feel weak. I get a few good days and then bam! pain and cramping returns.

I am really struggling to work full time and live my life. Some days I’m up in the wee hours of the morning with the pain and then I’m exhausted! I often miss 1 to 3 days of work in a week. (I work in a public agency and teach classes, I can’t always get to a restroom) It’s so much time out of work. I don’t understand if this is a “flare” or if my disease is just out of control.

I have talked to my GI and she prescribed Bentyl, which only helps a little. She says my labs are improving but I do not feel like I’m getting much better. She seems to think that this is all normal?
I am confused. Any comments or advice would help. I just don’t know what to expect or what is reasonable.

I am getting married very soon and just want to enjoy this time in my life. Sigh.

Natatouille
Joined Nov 7, 2018

Wed, November 07, 2018 3:32 PM

Reply posted for Natatouille.

Everyone is affected differently. The only Med that worked for me was prednisone. Remicade didn’t work and I’m now on entyvio which doesn’t seem to work either. Some people have very good results with these drugs. If you’re not happy with your medications ask to try something else. I was usually fine in the morning, food I ate in the evening usually came back up later. Sometimes my system was so fragile even smells of food could make me sick. Good luck. I hope you get it under control before you get married.

charbs
Joined Oct 31, 2016

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