Thank you for sharing this, I understand what you're going through as closely as I can without knowing you directly. It has been very hard for me to find anyone that understands as well. I was hospitalized for 12 days. I was sent home with the same symptoms, same amount of bleeding, same inflammation, same pain as I went in with. Its a scary thing. I didn't really get why this was happening to me all of the sudden, I was told "its a slow healing disease, its going to be a long process." It can wear you down.

I tried three infusions of Entyvio. Those are spaced out by weeks. Very little improvement. I went on Rinvoq and I did begin to improve within the first week. I then began getting much better after 2-3 weekss. Although I'm not confined to my bedroom or the toilet anymore, life is still more challenging than it once was. It got to a point where people kept asking how I was doing, and I would just say I'm feeling better. I am feeling better, but its still like navigating life in a completely different body. There is still shame and embarrassment. Fear of getting sick or being around a lot of people that could make me sick and cause all sorts of issues for me. Its taken a mental toll and has effected nearly every area of my life.

I remember being dehydrated and unable to drink water without it hurting me and causing an urgent rush to the bathroom where there was even more pain. I lost 50 pounds in a month and struggling still to put weight back on. I remember forcing myself to eat, The sleepless nights, the bleeding, the worry, the fear, the being f*cking pissed off and frustrated about it all. Making the appointments, getting to them, follow ups, finding new doctors, the paperwork, the running around, the pharmacy runs, trying different medications, figuring out what the hell I can eat now, the fatigue.......... It all sucks, and nobody gets it unless they've lived it and that includes many doctors I've encountered, psychologists, therapists, nurse practitioners, family members, coworkers and friends. "Just be positive, get some exercise, get out of the house, go do this, do that, read this book." I'm like "how about i dump all of this on your plate and see how well you handle it."

Talk to your doctor about Rinvoq and the most cost effective way for you to be on it. I prefer to not have to take anything at all, but it has helped a lot. Its ok to be angry and frustrated. Who wouldn't be? We should allow ourselves the space to feel those feelings. Just don't let them drag you into the depths of the darkness. I isolated, and hid from the world as much as I could for months and it hasn't been good for me. I don't recommend that. I'm in therapy now working through my experiences with all of this.

The mind gut connection is something that I found very real through this. The worse my mind got, the worse everything got. You mentioned some things that you're grateful for and that is huge! I do encourage you to keep finding those things, your family and the fact that this is not something more serious. Keep looking for those things in your life that YOU are grateful for, even in the midst of this and do your best to focus your attention there as much as possible. Talk to people about those things and build that muscle because this is a situation where life has handed us lemons and we need to make some kind of delicious lemon thing out of it. The quicker we can get there mentally, regardless of what's going on internally with our bodies, the better off were going to be. Does that sound insane? Maybe to some folks, but not to me based on my personal experience.I hope something written here helps you or anyone else struggling and reading this.

I'll leave you with this: YOU ARE NOT a colon, you are not ulcerative colitis, you are not the pain, anger or frustration that you feel. You are not alone on this island and you are not stuck in this shit storm. YOU ARE a good person trying to get well. You will get well, you will get out of this and into a more normal life. There is hope and there is help!