From the deep

In early June, I went to visit my nieces in southern NH for the weekend. It was a fun weekend. Being Auntie Lisa is the best thing about me. I’m a good mix of “let’s make a big mess and clean up real quick before your mom gets home” and “DANGEROUS! TOO DANGEROUS!” I travel with a heated blanket for my joint and muscle pain. My nieces love me, but the “hot blanket” definitely ups my stock.

I think everyone who has ever seen my name at this point likely knows that my lower GI tract is a disaster. I have massive nerve damage and a colon that is prone to herniation and bleeding. I have had many scopes, biopsies and surgeries. I had an ostomy and resections and may eventually end up with another ostomy. My colon is shorter and there isn’t a ton of rectum left.

Last year, I had surgery to take down the ostomy and reconnect the higher colon to the rectum. The process of trying to nail down what would work and what was best for me was fraught with frustration, anger and grief. There was a general feeling that the colon should not be removed in its entirety because “if they were wrong, they couldn’t put it back.” There really isn’t any case literature to look to here; we were figuring this out as we went along.

My biggest concern with leaving part of the colon in was that it would not be short enough to reasonably prevent impaction. I was worried it could land me right back where I was before the ostomy, when I needed to literally bowel prep myself in order to pass any stool. My abdomen was always swollen and hard, my abdominal pain was serious and my rectal pain was really bad. It was an awful time. This was also before I understood mast cell disease well and a lot of what I was eating and doing made the pain and swelling worse. It was truly miserable.

Last month, while I was in NH being Auntie Lisa, I realized that my rectum was really hurting and something was wrong.

I will spare you (and me) the gory details but it took me seven hours of actively trying to stool. Seven hours of pain so bad that at points, I was literally screaming. My lower GI tract was very, very swollen. And in that seven hour period, I realized my colon had herniated again.

It has been six weeks since that day. Swelling has gone down and bleeding isn’t awful. But it is definitely herniated. The pain is bad.

It’s funny how fast you forget how bad something hurts. I’ve had persistent abdominal pain and bone pain for years. But it wasn’t this pain. My mind walled off the memory. I remember what happened. I just didn’t remember how bad it hurt.

I saw my GI doctor today. We talked about my symptoms and then about my rectum for a while. In the middle of the conversation, I started crying. “If this pain would just stop, my life would be so good,” I sobbed. I cried because I was in so much pain and have been in so much pain and also because when pain is this bad, you can’t think about anything else.  You can be grateful for things but you can’t appreciate them.  There just isn’t enough energy left.  The pain takes everything.

I manage the pain as well as I can but really I am still in quite a lot of pain. It was only in relating this aloud to someone who has seen me at my very worst that the enormity became evident to me. This is such a big thing.

And there is this other peculiar thing: that when I’m in pain, no matter why, it makes me think of all the other things that cause me pain, too. Every fear and worry and regret becomes vivid once more, all together. Those wounds open again, like air hungry mouths that finally surface from the deep. And then it’s not just my bone pain and my abdominal pain and my rectal pain and my stomach burning. It’s also that I never went to medical school and haven’t had kids and that my dog is old and that people can become memories so, so fast.

I have tried to tell myself that I can live like this because the alternatives are unpalatable. But I don’t think I can. I will have to do something about this and the very thought of it makes me shudder.