Feeling Robbed.

Yes, I kind of feel robbed right now. I had two surgeries this year - first on January 17th and second on April 21st. I feel like the surgeries should have helped more. Surgery one didn't help for the sole reason that 1/2 my badly damaged colon was still in my body causing pain. Surgery two should have helped more had the hospital not discharged me with infections which led to another week in the hospital and many weeks of home health care, infections and post surgical pain.

I feel robbed of that time, that time I should have felt well and free of Crohns pain because…. it's back.

It started a week ago last Sunday. I felt mostly okay, got to church and suddenly, without warning, felt like a knife was being ripped into my gut. I rationalized… must have been that corn I ate. Doctors said that without my colon it would be okay and clearly they were wrong. Yep, corn did it and it will pass.

Nope, not the corn.

A few days passed and I stuck to a very low fiber, even liquid diet at times. Tried to get my system calmed down. Then the joint pain started. I have peripheral arthritis caused by the Crohns. My joints started to hurt and swell… not just some joints… ALL of them.

I have spent all week back to life before my surgeries. Back to the life I thought the surgery would help fix, even if just for a few years (and yes, I thoughts years). It's calmed down some back to manageable pain but this is not what I wanted. Even worse, the drugs are not working and there is nothing new for me to try unless I maybe find some clinical trial to get in on (and yes, I am looking).

My kids are FINALLY doing well again. All my many months in the hospital and not home took a toll on them both (my son more than my daughter who is really too young to get it) but I refuse, REFUSE, to send him back into whatever funk he's finally come out of. I'll have to be in more pain than ever to go back to the hospital again. I am not leaving my family for this.

Let's be honest here. I was in bad shape from October to, at least, my first surgery. Crohns can be fatal - I see it in the news every so often. My surgeon outright told me if I had not removed my colon - the way I was headed with even TPN not helping me keep weight on - I may not be here writing this blog right now. That is a very real possibility that I don't think many people realize. I wasn't able to think about it when I was going through it but I think now and it sometimes hit me… I was not in good shape. I was in severe daily pain, lethargic, losing weight pretty much daily, my iron levels were something like a 2? I remember the doctors being extremely concerned about that one. I could barely make it through the days and would count the minutes until my friend's daughter got out of school and would come to the house and help me. I couldn't make it through the day.

Then the surgeries. And after the complications and whatnot I started feeling well…. really well for the first time in well, YEARS. I started acting goofy again, laughing and playing with my kids again. Happy again. I felt normal.

And now, this… this scares the shit out of me but I can't let it show. I can't have days where I sleep all day, where I say "No, mommy can't play right now, mommy hurts and needs to rest." That is not an option. So instead I take Tylenol by the truckload and push on - put on the happy face (don't let them in, don't let them see as Elsa would say). Want to go to Hershey Park - great, terrific, let's go! I paid for that one the next day but my son has some terrific memories of that (as do I) and I don't regret that day at all regardless of what it meant for me. That's what I want for him and my daughter. Memories of mommy doing things with them, having fun. Not of mommy in a hospital bed.

I have no idea what this flare means (where is the Crohns taking up residence now?) I have no idea how much longer it will last. How much can a body take of this? I hope mine can take a LOT more. I can only hope that this flare is some sort of fluke and it will go away. I am going to try to hide as much as I can like I did before the hospital stays and the surgeries. I do NOT want to get back to a place where I have to rely on others so I will do whatever it takes to not ask for help. I am going with the mentality that this WILL pass, things WILL be okay. Because, that's it, that's all there is, it HAS to be okay. I HAVE to be okay. I can not do this again so soon. I knew the Crohns would act up again - the surgery was not a cure and I know that but really…. I thought I would have some good YEARS here. YEARS. Not a few weeks or months, YEARS. Do you hear me universe? This is not cool - this is not okay. I've got a family who needs me to not be sick so… yeah.

I am going to go with a positive outlook and just think that this will pass any time now. How I felt even like, a week and a half ago… yeah, that's coming back. And when it does - look out world :)