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Been a very long time since I've been to these forums but I figured getting advice from people actually dealing with this nightmare of a disease wouldn't hurt. Couple of months ago I got diagnosed with Crohn's after years of being told I have UC and after I've had all three surgeries leading up to a jpouch. Since then my quality of life has been hell. I've been in and out of the hospital, watery and I mean watery stool, immense stomach pain etc etc. I've been quite unresponsive to about every medicine. Remicade and Humira have both put me into anaphalactic shock. I'm currently taking 6mp ( about a month in now ) but, I've had no noticeable improvement thus far. I'm honestly trying to find someone else that has Crohns / a jpouch that can help me before I lose my mind. I've had to leave school / work and I'm a young guy ( 23 ) and my quality of life is poor at best. I'm also curious if anyone here has pursued disability, I hate the idea of it but, I can't keep relying on others, makes me feel worthless.
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Sorry you are dealing with this. I don't have Crohn's (at least not yet!), so I can't give give you that sort of advice. That said, if none of the available medical treatments are improving your quality of life, you may just have to consider an ileostomy. I presume you have been avoiding this option as a last resort, but that may be where you are. You are too young to be a long term bowel cripple. I hope someone comes along with something new to try. 

 

Jan

Yeah you pretty much hit the nail on the head. The temp ostomy was literally the worst time of my life. Before I got diagnosed with this mess I was into the world of 5ks and bodybuilding, after the ostomy I couldn't even do what I loved anymore. I have a bad latex allergy on top of being sweaty after running lifting and my ostomy site was raw 24/7. I was perfectly fine with the jpouch a year in and had my life back so it's literalky so hard for me to give up on it but, it's literally killing me. I don't know what to do anymore.

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