This is my first post, so bear with me. I was diagnosed with Crohn's a few years ago. I've been in several states of pain/uncomfortability for over 6 years. I'm currently on Remicade and Imuran after every test and every drug my doctor could think of. I've only had one really bad Crohn's episode since the Remicade, but a lot of my other problems that the doctor blames on basically IBS still bother me every day. Basically, it usually hurts when I go to the bathroom, usually not needles, but a dull persistent pain in the rectum area, occasional nausea with no vomiting, and just generally feeling terrible. I have a hard time describing the last part; it either involves cramping or fatigue or some unspecified terribleness.
The really annoying part for me is that I cannot in any way determine a pattern. I don't eat any spices and stay on a gluten-free diet (it's about the only thing that hurts every time). Even with this very restricted diet, which sucks because I like a variety of food, I have the same problems. I could be absolutely fine all day, go to the bathroom once (not even diarrhea) and feel terrible the rest of the day. I take Tramadol for the pain, which helps, but other than vitamins and a probiotic I don't have much relief. I'm not too crazy about taking pain medicine everyday. I have started drinking Fennel tea, which sometimes helps. A lack of sleep or too little sleep really messes me up. It feels like a hang-over without the previous night's fun (which I can't do anymore).
I haven't had any major surgery yet, but I'm a little nervous for the future. I'm 30 and we're talking about having kids very soon. I'm really not sure if I'll be able to do it.
I guess my question is, has anyone else had a similar experience that can give me some recommendations or ideas?
Thanks for listening.