From a surgical waiting room.

 Journal

(Written from the surgical waiting room.)

Vanessa’s ulcerative colitis flare started in February 2019. Since then, life hasn’t been the same. Her flare didn’t resolve with medications and ultimately needed a colectomy. Normally a two part surgery with temporary ostomy, then you heal and go on with life. Inconvenienced with frequent bowel movements, but that’s usually the extent of it. 

Unfortunately, my wife wasn’t so lucky. Her body just hasn't cooperated. She developed a resistant cuffitis (residual inflammation in the very end of the rectum from ulcerative colitis. Happens in a very small number of ulcerative colitis patients after colectomy). After medical failure, this ultimately needed more surgery.

She had a surgical mucosectomy for the cuffitis. After this surgery, there is a risk of severe narrowing of the anus from scar tissue, “anal stenosis”. Of course, her body didn’t cooperate. She wound up developing this anal stenosis. This required yet more surgery. Then to prevent the stenosis from coming back, she had to do frequent excruciatingly painful anal dilations. Twice a day for two months. Then once daily for two more months. It was hell.

In this midst of these painful dilations, she developed a crazy and confusing case of gynecologic inflammation. They called it “vulvodynia” but this wasn’t a usual case at all. Her gynecologist told me, “I’ve never seen anything like this before.” Her surrounding tissue would fairly abruptly swell to 3x normal size, causing severe pain and inability to walk or sit.

More pain. More trips to the doctor. Multiple scans. Multiple gynecologist opinions. More trips to the OR. Did the pain and trauma of the dilations trigger some inflammatory response? Biopsy showed a high number of mast cells (a specific type of white blood cell not typically in this concentration.) Mast cells area  reservoir for a cocktail of inflammatory chemicals, which can suddenly dump its contents causing abrupt and severe swelling. These chemicals can also stimulate an abnormal growth of pain nerve fibers into the area. How does this happen? Does she have a mast cell disease? What can be done about it? Is it a tissue response to repetitive painful trauma?

Just when we thought it was bad enough... she developed an anal-vaginal fistula. This is a connection developed between the two anatomical sites. Stool was coming out of her vagina. Severe pain. Fever. Frustration. Fear. Hopelessness. 

She needed more surgery. It was likely a 50/50 if the surgery would fully resolve the fistula or if it would return. 

She had the surgery. Healing was slow. Her healing from the surgery was NOT usual. The degree of pain was substantial. 6 weeks and she still couldn’t sit because of the anal pain. The gynecological area pain persisted too. Why is it still inflamed?! Why? How? Is it because of the mast cells?! Is it the cause or a response? She took antibiotics and it resolved her fever. But the tissue never got back to normal. 

The surgery for the fistula was now two months ago, and no sign of a return. Feeling hopeful. The pain started getting better after an experimental approach using a migraine medication that blocks CGRP neurotransmitter. It seemed to help! Just when life felt like it could possibly return... the severe labia pain ramped back up! What is going on?!?!!!! She felt so hopeless and fearful. It doesn’t feel possible that life could ever be okay again. 

She was struggling. I was struggling, HARD. Then, the unthinkable happened. The fistula recurred. Stool coming from her vagina. Horrible excruciating pain. She’s couldn’t move or breathe when it hit. It would go on for 10 minutes. Must have been when stool entered into the fistula tract. She had mild pain as relief between these episodes if she laid VERY still. She couldn’t move! Couldn’t sit... walking so hard! If she had to have a bowel movement, severe pain. It was all too much pain. 

I was struggling. When the pain would hit her, I would have huge surges of adrenaline. Like there was an intruder attacking her. Trying to kill her. My “fight or flight” response was running at 100%. But there was no intruder or attacker I could fight. But the emotions would overpower me. I could either beat the crap out of a pillow, or fall to the ground sobbing and screaming. My emotional pain was uncontrollable. 

About 5 days prior to this, I had receive a message on Facebook. From someone I hadn’t seen in almost a decade. He was introduced to me by God. A truly Holy Spirit appointment. So, when he had something to say, I took notice. 

His message was one of surrender and of God’s faithfulness and desire to bless. 

HOW do I “entirely give” Vanessa’s problems to God? They are threatening to prevent her from living life. They are threatening her to an existence of chronic pain. Threatening to leave her unable to sit. Walk normal. To travel. To hike. To visit friends in their homes! How can I completely let go and let God be in charge of this? 

I prayed and asked for help. “Help me to know how to give this to You 100%!” 

Well... After the first day of the fistula return. After a day of weeping on the floor, of crying out to God, of yelling at him. I beat up pillows. I clenched my fists and beat on my thighs! It was a Biblical weeping and gnashing of teeth!

But somewhere in day two, I don’t know how exactly, but I finally was able to let go. Let go of Vanessa and let her whole life sit in God’s hands. Her pain. I can’t fix it. God, this is your responsibility. Heal her body? I may be a doctor, we may be doing all we know how, but what her body does with the medicine, with the surgery, will her body response and heal? I can’t make that happen! That is God’s responsibility. 

What can I do with her fear? Her desolation? Her hopelessness? Her sadness? Grieving the loss of her life? I can’t fix those things. I can’t do those things for her... I can only love her. That is all the power I have. Somehow, by the grace of God, I finally let go of all this stuff. All these things that I so desperately wanted to control and fix. I let go because I can’t do it. It’s not humanly possible. I let go because only God can do those things. I let go so that God will be the author of her life. I let go because I finally rested in the faith that God is good ALL the time, even when we do not understand. 

When I let go... gone were my episodes of weeping. Gone were my episodes of “fight or flight” adrenaline rushes that would overpower me and reduce me to a screaming puddle of tears on the ground. This was good to let go of and to be free of. When I was reduced to tears and screams I could not help my wife. I could not comfort my wife. I could not love my wife in a tangible way. But now, from this place of peace and freedom. I could do all humanly possible things to help her. I could carry her with my faith. I could comfort her with my calm presence. I could love her with my words, kisses and touch. 

For our entire relationship, I had struggled to have a healthy identity from Vanessa. Almost like the boarders of our identities were blurred and I wanted to be responsible for her emotions, he very life. I struggled to be okay with my identity unless I sensed that she was content and happy. I worshipped her happiness, which was dangerous for us both. 

In this breakthrough, it feels like there is a sharp demarcation of identity. That is her. This is me. I care about her emotions. But it’s not my place to care FOR them. Her emotions are her responsibility. My greatest job isn’t to manage and micro manage all aspects of her life to prevent any sense of anxiety or sadness. My greatest job is to help her feel loved. To help her feel that she matters. And she does. She matter so much to me. But now, I must let her rest in God’s hands. She is in charge of managing her life, of learning to depend and rely on God. To submit to God. To walk in his will... only she can choose to do that. And God is in charge of helping her get there. Even if the journey to spiritual growth is a long valley of pain and health problems, HE is faithful to walk the whole valley with her. His goodness never ceases. His help and love never stops. 

Vanessa is safe with God. I trust him. 

More reflection. Would I have been able to get to this place of entrusting all of Vanessa to God had not it been for the continued pain? Probably not. The very thing that I perceive as horrendous harm, God used for good. Growth comes from out of the pain. Just because you go through pain doesn't mean you will grow. It's just an opportunity for growth. You don't have to take the opportunity to do the growing. But what a pointless suffering if you do not look for the growth opportunity. Ask God to open your eyes to what he wants to do out of the pain. He will. He literally sent me a message through a fellow believer with a direct command. "Give Vanessa 100% over to God." Wow. Just wow!