Winding in the light

I have a wound on my abdomen, a literal open wound where my stoma was. Every night I undress it, removing long thin strips of gauze before replacing them with clean packing, manipulating the tendrils with sterilized scissors. It is graphic, visceral. But I prefer to do it myself. I prefer this active stewardship of my body.

It is healing, closing up along the seams that have formed on my skin, one on each side. I am participating in the act of healing my body. Soon the line will be continuous, all the tissue underneath knitted together. Just a line that keeps a secret, like lips sewn shut. No one will ever look at this scar and know I had an ostomy until I tell them.

My GI tract is trying to figure out how to work with this new continuity. It hurts. It feels like everything holding my abdomen together on the left side is trying to give out. I am starting the very slow and arduous process of regaining strength and routine. It feels like a lot on some days. Today it feels like a lot.

But two years ago this was unfathomable. Even six months ago, I thought I knew pretty well the path my life would take it, and it was a short road, a straight line to pain and anaphylaxis and liquids and soft solids forever. I still see that road, but it is longer and it winds its way more into the light.

I don’t believe anymore that there is any fear that is so wide and so deep that you cannot meet it. I just don’t believe it.

Back together

This winter, when my entire city struggled under walls of ice and snow, I found myself dreaming about the beach. In my mind, I stood by the water’s edge, air warm, breeze strong off the ocean, sun warming my skin. I imagined myself looking and seeing the scar where they closed my ostomy site.

It was such an impractical dream that I didn’t really hope for fruition. I am essentially allergic to the beach – sunblock, sunlight, cold water, heat. And of course my ostomy site would never be closed. It was not even an option then. I never thought it was possible.

Three months later, I arrived at the hospital to have surgery that would reverse my ostomy and reconnect the two segments of my GI tract so that stool would pass through the rectum. It felt surreal, like at any time I would find a man behind a curtain, pulling strings.

They took me right in and every person who spoke to me knew that I had mastocytosis and that I needed premeds one hour before the procedure. They went over everything with me again to make sure it was mast cell safe. “You are the boss,” one nurse told me. “You live with this all the time, just tell us what you need.” I have waited years to hear these words, for providers to believe that.

They administered my premeds and the anesthesiologist came to give me an epidural. It was painless. They taped the line with my safe tape and lay me down. They pushed some midazolam and fentanyl and wheeled me into the operating room.

“I need to tell you something about my skin,” I said suddenly, jerking awake from my semi-unconsciousness. “My skin is really reactive and hives easily, so don’t think that it’s a sign of anaphylaxis.”

“We know,” the nurse said, nodding reassuringly. “It’s in the note you gave us for your chart. We know about your disease and we will be careful.”

And the first time in a long time, I believed it. Everyone in that room understood at least the basics of mast cell disease and our special operative concerns.

I lay back and they put a mask on my face. I breathed deeply and woke up a few hours later in the PACU.

I had an epidural with a bupivacaine PCA pump that I could push as needed to numb my abdomen. I had a hydromorphone PCA pump that I could as needed for additional pain management. I couldn’t feel any pain. It was amazing. I still reacted to the anesthesia with my typical nausea/vomiting but they were prepared for it. Frankly, it was so pleasantly different from my last major surgery that it seemed like a small price to pay.

About twelve hours after surgery, my GI tract started moving. Last time, it didn’t move for five days. This time it was moving and pushing things in the right direction. It was the best possible indication that this had worked. I couldn’t believe it.

The following day I was up walking around. (If you are having abdominal surgery and have mast cell disease, ask about an epidural. It honestly was the lynchpin here and made the pain so manageable so my mast cell reactions to pain were really minor.) I was eating the day after that. I had a couple of reactions but they were easy to control because there were orders to administer Benadryl and Pepcid IV as needed, as well as steroids if the reaction was severe.

I felt so safe. The nursing care was so good I wrote a letter detailing how amazing they were. They all asked me about my disease and diluted my Benadryl and they were just generally fantastic. Instead of spending seven days fighting for things I needed, I spent seven days managing my pain and reactions in an environment with many professionals who cared and understood that I was not just a crazy person asking for crazy things.

I came home a few days ago to my kitchen table covered in presents and cards from the mast cell community. It was so humbling. It was like Masto Christmas. There were books and movies, a huge piece of amethyst, stuffed animals, cute like knick knacks, funny cards, touching cards and pictures drawn by the masto kids. It was the perfect punctuation for this experience. I try to hold things together and to be strong at the broken places, and you guys just pulled everything together for me. I will never forget this kindness as long as I live.

One of the very difficult things about mast cell disease is that we so often have to fight for things we need to be safe. We are always ready for a fight, always on edge. We wonder if it we can keep this up. We are so tired. We just want to be safe. We want others to help us be safe.

This experience was the culmination of years of educating medical professionals and of them receiving education on mast cell disease elsewhere. This time when I said I needed Benadryl, they just got it for me. No fighting. I am the boss of my body.

I write a lot about how I see the world and how I interact with it as a mast cell patient. But in my private writings, I write about how I want the world to be, how it should be. Two weeks ago, I went to the hospital for surgery and during my stay, I realized I was living in that world. Maybe it was just for a little while, but I was there. I could hear the universe whispering to me, “You can do this. Look how far you have come.” So I’m ready to fight again if I have to, because I saw this other reality, and it was real and safe and we can make it like that everywhere if we try.

So when time goes by and it gets hard again, and I’m exhausted from advocating, I’m going to remember this. I’m going to remember this win. I’m going to remember that this safe place made it easy for me to heal and rest. I’m going to remember that this fight is how we make the rest of the world safe for all of us, not just for me, at one hospital, one time.

I’m going to remember that this tired, sick body made this incredible thing possible, and when it seems like I can’t do any more incredible things, I’ll remember that I achieved this, and that I can achieve so much more.

And when you guys are tired and sick of fighting, promise me that you’ll remember that this is possible, and that we’re all in this together. When you think you can’t do it anymore, just extend a hand to the void. We will be there to hold it and put you back together.

 

 

Premedication and surgical concerns in mast cell patients

The exact incidence of immediate anaphylaxis from anesthesia or surgery in mastocytosis patients (or mast cell patients, more generally) is not known. Only a handful of these events have been reported in literature; however, it is likely that the majority of uneventful procedures were not tracked, so statistics are unclear. To date, there have been no controlled trials investigating anesthetics in mast cell patients.

In 2014, a paper was published entitled “Perioperative Management of Patients with Mastocytosis.” This paper is excellent and addresses the specific issues that may arise for mast cell patients before, during and after surgery. I recommend you provide this reference to any doctor involved in your surgical/procedural care that is unfamiliar with mast cell disease.

Mastocytosis patients are at risk for activation by a number of triggers, some of which cannot be avoided in the surgical setting. For this reason, suppression of mediator release in advance of surgery is recommended. The following pre-medication protocol is recommended for mast cell patients for all major and minor procedures and for radiology procedures with and without dyes:

  • Prednisone 50mg orally (20mg for children under 12): 24 hours and 1-2 hours before procedure
  • Diphenhydramine 25-50mg orally (12.5 mg for children under 12) OR hydroxyzine 25mg orally, 1 hour before procedure
  • Ranitidine 150mg orally (20mg for children under 12) 1 hour before procedure
  • Montelukast 10mg orally (5mg for children under 5) 1 hour prior to procedure

This protocol was developed for the Mastocytosis Society by Dr. Mariana Castells and the original can be found here: http://www.tmsforacure.org/documents/ER_Protocol.pdf

 

Common triggers for mast cell patients in this setting include:

  • Anxiety and psychological stress regarding the procedure. Administration of medication to mitigate anxiety (benzodiazepines, etc) is recommended to avoid mast cell degranulation. It is preferable for mast cell patients to be the first surgery of the day if possible, and for a quiet, calm atmosphere to be maintained in the OR.
  • Temperature changes. Either being too cold or too hot can culminate in a mast cell reaction. Constant monitoring of patient’s temperature is required. Additionally, the OR temperature should be monitored. Head coverings, warming mattresses, and forced-air warming systems can be used to prevent hypothermia. Infusion and irrigation solutions should be warmed, and anesthetic gases should be warmed wherever possible.
  • Irritation of the skin (including use of tourniquet). This can cause mast cell degranulation that leads to urticaria, especially in patients with cutaneous mastocytosis. Blisters may form with pressure from tourniquet or face mask. Mast cell degranulation of this type releases chymase which can lead to edema.
  • The inherent physical trauma associated with surgery. This is of specific consideration when operating in the GI tract, which has a significant mast cell population relative to other organs.
  • Musculoskeletal pain from skeletal involvement in SM patients. Patients should be positioned carefully to avoid causing fractures.
  • Pain can cause mast cell degranulation. For this reason, opioid medications should be used for pain relief wherever possible.

 

Reference:

Pascale Dewachter, M.D., Ph.D.; Mariana C. Castells, M.D., Ph.D.; David L. Hepner, M.D., M.P.H.; Claudie Mouton-Faivre, M.D. Perioperative Management of Patients with Mastocytosis. Anesthesiology 03 2014, Vol.120, 753-759.

The comedown

Last fall, I talked with my doctors about removing my rectum. I have had colitis for years.  It hurts and bleeds all the time.

In January, my surgeon scheduled surgery to remove it. This would eliminate all possibility of reversing my ostomy. I was fine with that.

In February, my GI specialist told me I could get a subtotal colectomy and reverse the ostomy.

A week later, my surgeon told me he thought it might be better to just remove the entire colon.

Last Thursday was the two year anniversary of placing my colostomy. My surgeon called me that night to tell me that he had run into my GI specialist and they had together decided to reverse the ostomy and not remove all of the colon because if they are wrong “they can’t put it back”. This removes some colon but for complicated reasons I’m too frustrated to explain right now, there is a rock solid chance that I will end up exactly where I was two years ago before I got my ostomy. A place I swore I would never be again. He offered that if it didn’t work, then we would remove the rest in another surgery.

My hospital time after placing my colostomy is pretty hazy. I remember waking up in the recovery room and pulling the blanket, straining my neck to see the stoma. A nurse ran over and pulled the blanket up; she didn’t want me to see it until my surgeon was there. I watched her walk away before I looked again. It protruded about an inch, was pink and puckered, easily visible through the clear ostomy bag. “Like a rosebud,” my surgeon said. Yes, exactly like that.

The first time I stooled with it was a wonder, this painless relief. It didn’t last, but it was wonderful while it lasted. It hurt, but not as bad as my rectum had hurt before. Not as bad as the agony of not being to go to the bathroom, of constant distension, of your insides wrenching to no effect. No, not that bad, not like that.

I chose to get a colostomy. It’s not a choice that all colostomates get; some people suffer a terrible injury and wake up to a bag around a surgical opening into their intestines. I chose to get a colostomy, and I live with that choice every day, and every day I would say to myself, having this is a good thing. I believed it most days, if only to avoid arguing with myself. It is an act of self preservation, this sort of aggressive acceptance of your body.

Right up until the second my doctor told me he felt I could reverse the ostomy, I had never even considered it. How could I have, when before was so bad? No, I never did. This was part of my choice; I understood when I got it that it would be forever.

Right up until the second my doctor told me he felt I could reverse the ostomy, I never wanted to reverse it. But as soon as he said it, I did. I wanted it more than anything I’ve wanted in a long time.

Now I am looking at the very real possibility of ending up in the position of eventually not being able to stool again without serious intervention. At the very least, not without another surgery in the future. And that’s really stupid, it’s really stupid to decide to do this, because I’m so literally tired of surgery and procedures and shots and IV meds and this fucking port and its stupid dressing and I’m so literally tired of being sick right now that all I want is to not do this anymore. I don’t want to do this anymore. Because I have four feet of trigger living inside of my body and now I’ll never be able to stop cleaning up puke from my toilet every day and reacting to the smell of alcohol when I hook up IV fluids every night and taking the mountains of pills I push around every morning in the pillbox with a resigned finger. I am allergic to my own body and how can I ever get better when I’m literally allergic to myself?

I just want to get better and I’m never going to. But I still want it, I want it more than anything and knowing that I’m never going to doesn’t make me want it any less.

Two years ago, I woke up and saw my stoma, and for many days after that, I told myself it was a good thing, if only to avoid arguing with myself.

Four months ago, I was fine with having an ostomy forever and now I’m getting rid of it and I wish they had never told me I could.

All these plans I have made seem farcical now because they depend on me not reacting to being in pain all the time and that is only possible if I’m not in pain all the time.

Dreams are great and all, but the comedown when they are smashed is fucking hell.

My surgery with mast cell disease pro-tips

Surgery with mast cell disease is a bit of a logistical circus. I am fortunate to be able to have my surgeries at a major teaching hospital where my mast cell specialists are also located and mast cell disease is understood to some degree by most people. Even still, there are a lot of things that must be organized in order to ensure the safest procedure possible.

Surgery is an inherently triggering process. It’s stressful. Even if you know it’s coming and feel fine about it, it’s still stressful. It is mechanically triggering to the body due to manipulation of the skin and tissue damage and remodeling. Operating rooms (and hospitals generally) can be hard for mast cell patients, with chemicals everywhere, poor control over temperature and the use of things like blood pressure cuffs and masks. Please assume that surgery will trigger you and plan ahead. Do not expect to be able to undergo surgery without mast cell precautions.

The first thing to do is make sure all of your (relevant) doctors are on the same page. Schedule appointments with all of them. Do it face to face.

Schedule any testing with enough time to have conversations with all of these doctors. This is frustrating but necessary. You do not want to find out later that another option would have been better, or that there was a precaution that wasn’t taken.

Meet with the anesthesia team in person. If you are in the hospital/seen by hospital providers frequently, they will sometimes say that you don’t need a face to face pre-op because you have recent blood work/they already have your anesthesia protocol/whatever. Do not listen to them. When you meet with the anesthesia team, open with the fact that you have a rare, life threatening blood disorder that causes severe non-IgE mediated reactions. Say it like you mean it. Then ask them to go through their entire procedure with medications they will use. Tell them what medications cannot be used for you. Do not be shy. I bring a list of meds contraindicated in mast cell disease, as well as a list of meds that I personally react to. Give them this list.

If you have reason to believe that these doctors are not familiar with mast cell disease, bring them a review article.

After pre-op, I also prefer to meet with the surgeon again face to face to go over in excruciating detail what they will do and what materials will be used to do it. Give appropriate substitutions (betadine for chlorhexidine, or whatever). If you are unclear on this, please consult your mast cell specialist ahead of time. Ask them if the hospital stocks all of your meds and if they don’t, find out what alternative they use. Try these alternatives ahead of time whenever possible.

Discuss your dietary needs with your surgeon ahead of time.  Bring a list of foods and meals you can eat.  If they cannot make you food safely, you may have to have someone bring you food, but you do not want this to be a surprise.

If you need an interpreter, make sure this is very clear to everyone involved as early as possible.

Make sure your pain management plan is rock solid. If you need to trial pain meds in order to find a safe one before surgery, do it. Do NOT have surgery without a pain management plan. It delays healing and is very triggering for mast cell patients. Also, that just sucks.

Same for anti-nausea meds. You will get nauseous.

If your surgery requires prep of some kind, I strongly advise you to trial it before you need to use it. As an example, the typical bowel preps they use for colonoscopies and GI surgeries just do not work for me. You do not want to find that out two days before surgery.

If you are having bowel surgery, expect to react to the prep. It is physically stressful. Discussion adding medication during this period with your mast cell specialist. I take extra Benadryl and oral steroids during this period. If you are adrenally insufficient, please consult with your endocrinologist regarding the need for additional steroids.

Pick a date when your doctors do not have imminent out of town time coming up. (For me, I want my mast cell GI specialist, immunologist and surgeon to be available.) And make sure that whoever is covering their service during out of office hours understands mast cell disease! This is so important. Sometimes you have one doctor in a group who treats mast cell disease, you do not want to be talking to someone who specializes in food allergy when you are having trouble.

I often see that people have not followed the premedication protocol recommended for mast cell patients. Let me be very clear. You are going to react to surgery in some way. Premedication is not a suggestion. It is a requirement. This protocol is designed to suppress anaphylaxis and to allow your body to behave during the procedure and the 24 hours or so following. If you have a hard contraindication to one or part of the premedication protocol, ask your mast cell specialist what you should take instead. STEROIDS AND ANTIHISTAMINES SHOULD BE TAKEN AS PREMEDS FOR SURGERY 12 HOURS BEFORE THE PROCEDURE AND ONE HOUR BEFORE THE PROCEDURE. THIS IS NOT NEGOTIABLE.

The day of the surgery, bring your medications with you to the hospital in case they don’t have your brand/med/whatever. BRING YOUR EPIPENS.  If you use special dressings/have a central line/ostomy/G-tube/something, bring all your stuff for that.  They will probably not need it, but you never know.  Also bring a copy of your health care proxy/ advanced directive and your “greatest hits” (current meds, health conditions, allergies, etc). Try to get scheduled for the first surgery of the day, but remember that you will need to be there about two hours before they operate in order to get settled and get IV meds an hour before the procedure. Even if you schedule this ahead of time and no matter how many notes are written, someone is still going to give you a hard time about one or all of your premeds. Do not be dissuaded. These are compulsory.

If you have a bad feeling about what is happening, feel your necessary precautions are not being respected, or generally feel like you are being pushed into something you do not want to do, reschedule your surgery. I do not care if you are in your fancy hospital gown with your IV started. If you feel that you are not in the hands of providers who will take care of you, leave. Your safety is more important than convenience for these people. Your health is not a democracy.

If you are a mast cell patient, you are likely going to need some babysitting after surgery. I was not allowed to be alone for three weeks after my 2013 surgery. Schedule this ahead of time. Do not worry about entertaining people. Type up a list of your meds, what they do, how to take them, etc, for your babysitters.   Also type up a list of signs to watch for. MAKE SURE THAT ANYONE WHO IS TAKING CARE OF YOU KNOWS HOW TO USE AN EPIPEN.

Relax. Surgery is a bummer but with precautions, it is still very safe for mast cell patients.

 

Less

The end of February was one of those spectacularly awful periods where it seems like the entire world is conspiring against me. I woke up with sudden, severe back pain so bad that I literally got stranded in the middle of my bed for twenty minutes until the spasms stopped. My dog got into some not safe for dog food and got sick. It was bitterly cold. I felt like I was generally fucking up the lives of those around me just by existing. Not my best work.

In the middle of this, I told everyone about my decision on surgery. A few days later, I realized I could not say colectomy out loud with feeling this profound emptiness. I got the letter confirming my surgery date and pre-op/post-op appointments. I couldn’t even open it. I threw it into my filing cabinet and slid the drawer closed.

I am very strong willed. It’s not always a good thing. I can talk myself into doing anything if I feel strongly enough that it’s the right thing. I can talk myself into ignoring my fear, but sometimes fear serves a purpose. It protects us. It shows us where the line is, and what side we’re supposed to be on.

So I decided to take a little time and explore my fear and figure out its purpose. I didn’t talk about my health in depth or do any research or write about being sick. I focused on all the other parts of my life. I cleaned my apartment and cooked and worked and took care of Astoria. And I thought. I thought a lot about my life and my disease and this surgery and my fear.

When you are chronically ill, you are in a constant struggle to not have less. Less time. Less money. Less health. Less hope. You work so hard to make your life workable and any setback chisels away this richness of your life, takes pieces that you may never get back. That is what I am afraid of. I am afraid of less. I’m afraid that this will all backfire. I’m afraid that I should live with this pain and poor function. Because I know the space I have with this life, and if I make the wrong choice, I could end up with less. And sometimes this life feels so small, and how could I live with any less?

I am brewing an obstruction right now. I felt it on the train ride home, the pain spiderwebbing out from about an inch behind my stoma. Tonight, I ran a very hot bath to try and move things along in my bowel. I deaccessed my port and took off the ostomy bag and appliance and stepped into the water. I felt myself turning red as I lowered myself down.  I leaned back, resting my hands on my hard, distended abdomen.

I looked at my body, really looked at it for the first time in a long time. I saw the way my skin flushed and mottled. I saw the hives around my stoma where I react to the adhesive from the ostomy appliance. I saw my body struggling to digest. Is this more? Is this the best it will ever be?

I think it’s a blessing that you’re not forced to ever know the exact magnitude of the wrongness of any one decision. I’ll never really know if I made the right choice. I could choose to change nothing and in six months, something completely unforeseen could happen. There’s no way of knowing. I’m grateful for that.

My decision is already made. This sense of loss is normal. This fear of less is normal. And at the end of the day, I am not built for caution. I’m just not. I can’t live with less because I’m scared when there is a chance for more.

I walked around for several minutes after I got out of the tub, just me and no devices. No dangling port access. No occlusive dressing.  No ostomy bag.

It felt alien. And maybe a little bit like hope.

The fullness of time

It is so easy to lose yourself when you are sick. In the beginning, you are two beings, you and your illness. Together but separate. Independent.   Slowly, you bleed together. And then one day you are contained in this diseased vessel and everything is harder and you can’t get out. Every choice you make, every tiny decision, matters. Everything has consequences.

I have been mulling my GI surgery for several weeks. This is such a nuanced situation. Each solution has its own consequences. None of the options are benign. I always made my health decisions right away. Whatever my gut feeling is, that is my decision. Then I spend a few weeks justifying it to myself and making myself feel better about it. It’s sort of a weird quirk of mine.

That didn’t happen this time. I think about it all day, every day. It makes everything else seem more difficult, this looming decision and impending consequences of my choice.

I am terrified that I will choose wrong and the consequences will harm me. I’m also terrified that what I didn’t choose could have helped a lot. It is hard to know, especially for someone like me, with multiple unusual conditions, and big dreams. I count my big dreams as one of my conditions, something that must be accounted for. I have to be able to live with my choice.

After much research and discussion with my relevant specialists, I have decided on a surgical option. I am having some tests repeated in a couple of weeks, but they are merely to confirm what I already know. Almost exactly two years after I had my colostomy placed, I will be having the entirety of my colon removed save for a little bit of salvageable rectum. My small intestine will be connected directly to the rectal tissue and my ostomy will be reversed. If this fails, I will have a permanent ileostomy and accompanying nutrition problems for life, made worse by the fact that I can’t eat many of the foods used to mitigate this issue.

In the fullness of time, all your choices either fade into the ether or are absorbed into your being.   If I choose wrong, it will become a part of me or become insignificant. Nothing is absolute. These choices become part of the constellation of our lives and you can follow the stars all the way through the story.

I wish everything wasn’t so hard right now. I feel like I am in the middle of a raging storm, the kind you get in New England summers, when the humidity is too much and the sky unleashes it. I’m standing in the downpour, lightning whipping and thunder crashing around me. It is awesome and terrifying. It feels like change.

And I’m scared. But I’m still here.

Go big or go home

In December of 2012, my surgeon told me I probably needed a colostomy. I wasn’t really ready to hear that. It didn’t seem like it should be so complicated. I just wanted to be able to go to the bathroom. But my lower GI tract was fundamentally broken. There would be no easy fix.

When I had my surgery in 2013, my rectum was not removed. I think they were worried I would have buyer’s remorse and want to go back to bowel prepping myself twice a week. I remember thinking that leaving the rectum in was a bad idea, but there wasn’t any obvious reason to remove it, and it wasn’t clear if it was a problem by itself or because I couldn’t go to the bathroom. So it stayed. And became a problem.

It was always very clear to me that if I got an ostomy, I would have it forever. I had seen several people about this, gotten several opinions. I did not think I could heal enough to ever not have the ostomy. A fair amount of ostomates get their ostomy reversed only to need a second one placed within a couple of years due to major issues. If I always assumed that if I got the ostomy, that that would be it. I would live with it forever.

I got some news on Tuesday that I wasn’t expecting. My mast cell specialist told me that he felt there was a second surgical option for me. This other option would be more complicated up front and less of a sure thing. But if it worked, I would no longer have an ostomy.

I was stunned. I am stunned. We had mulled this option over for my 2013 surgery and decided it wasn’t a good idea. But now, he thinks, it’s worth discussing. I fired off an email to my surgeon and sat down to stew about it. I’ve been stewing ever since.

I feel like this should be good news but I’m not sure that it is. It’s complicated. It would require removing a lot more tissue. It would be more invasive, with a harder recovery. I think it is less likely to work. I think it will work for a while and then I’ll need more surgery and a second ostomy in a few years. It’s not the safe decision, for sure. It could be a huge failure. In several ways.

I don’t really know how I should feel about this, or how I want to feel about this. I prefer not to think about the possibility of not having an ostomy. I had to write it off to survive. I couldn’t focus on an idea that would probably never be real. So I didn’t.

I’m super casual now about my ostomy. I make jokes about poop and colostomy bags and farting in meetings. I don’t care if people see the bag or the lump under my clothes. I incorporated this reality into my identity two years ago and I never looked back.

I don’t regret getting the ostomy, but this is making me realize that I might be happier if I didn’t have it. It’s a lot of work. It’s a lot of work anyway, but it is especially a lot when you have both an ostomy and a central line. I am sterilizing things constantly. And the ostomy works better than my rectum did before, but I wouldn’t say it works well. It works okay. Maybe less well than what they could whip up surgically. Maybe.

I don’t know how I got here, to this place in my life where it’s no big deal to talk about constipation or my rectum on the internet. It was less of a transition and more like diving into the ocean: sudden, jarring, but not bad.  And this is hard for me to say, but I think I am a better person for doing it and I feel like reversing the ostomy would change me. I think when you live with a bag adhered to your body that it makes you less self conscious and less concerned about things you can’t control. I really don’t care about how people perceive me because of it and it factors very little into my self image. And I think that’s a good thing.

And what if they reverse it and it works for a while and then they have to reverse the reversal and I’m in the same position as I am now? Can I live with that? Can I live with the disappointment of regaining normalcy in this one very crucial way only to lose it, again?

When I was young, I had this very clear idea of how my life would go.  It did not include getting sick or having an ostomy. It did not include these things being so mundane that I can discuss them anywhere, with anyone, without getting upset. But they are. This is my reality and I don’t know that I can take having to get okay with this reality a second time.  I don’t know that I can take even the fear of it.

And the very hardest part: that I don’t want to be responsible for my own suffering.  I don’t want to be the one who decides not to take the chance at reversing the ostomy when doctors are telling me it could work.

I’ve always been the kind of girl who goes big or goes home. But it’s getting harder to take risks. And I don’t know whether or not it’s time to just go home.

 

Screaming at the sun

I woke this morning to several more inches of snow. I watched it fall as I hovered in the doorway, the dog chasing it around the yard. My city has seen over three feet of accumulation in under a week with more on the way. It makes life more difficult, but it wasn’t difficult yet first thing this morning. It covered everything, pushed away the peripheral realities of life. Not a problem yet, just me and this sparkling, crystalline oblivion.

I am grieving right now. The isolation that accompanies snow storms is a good fit these days. I drink entire pots of coffee and fresh juices and type furiously while listening to the Beatles. There is no one to ask about this pain. It is just as well, because I haven’t felt like talking about it.

I funnel this frenetic energy into work, into writing posts, into cutting up fruits and vegetables to juice. I don’t want to sleep because I feel like I should be doing something. I can’t sit still because I am so uncomfortable in this body and if I stop moving, it feels like this sorrow will be upon me.

I grieve all big decisions, whether or not I realize it at the time. This swell of emotion has been building for some time, all the small upsets snowballing around this weighty core. I realized last week that I can no longer feel the difference along the scale of emotional pain. There are no little things right now. Every pain hurts exactly the same.

I will have the surgery and recuperate. I will feel better when I am healed. I will be taken care of. I will be fine. I will do all the things I have to. Everything will get done. I will be fine. I will be fine.

I don’t get upset when I see a blizzard is coming. The sheer enormity makes it pointless. It’s like screaming at the sun. There’s no point.

It’s the same with this pain. I know there’s no point in trying to change it. But sometimes I scream at the sun anyway.

Burning down

A lot of my doctors remember that I was applying to medical school before I got sick. I think this is funny, but I suppose my story is strange enough to be memorable. When I saw my surgeon to discuss my upcoming surgeries, he asked if I was still planning to go.

“I would never survive medical school,” I said casually. I briefly described how I anaphylax when overtired, that stress is dangerous for me, that sometimes I sleep through entire days.

“I think you’d be fine. Never say never,” he replied.

Inside, I was shaking my head. I want to go to medical school. I think I would do well in medical school. But this disease is such a constant unknown. I can’t predict what it will do, and all I can do is try to live around it. I don’t know that I can justify going to med school when four very stressful weeks could disable me permanently. Even more than I’m already disabled, I mean.

Then there are the more practical concerns. Like how I almost never drive anymore. If I drive somewhere, there is always the chance that I will react and need IV meds that make me unable to drive. When that happens, I need someone to come get me and drive my car home. I also can’t take pain medication if I need to drive. And also, it irritates my hips. So I would need to find someone to drive me.

And that most basic adult life skill: waking up to an alarm. Can’t do that either. I have a deaf alarm clock that shakes the bed and two other alarm clocks. They don’t wake me. I have to be woken up by my parents every morning, which is really humiliating. Every time I fall asleep, I’m afraid I won’t wake up in time to do whatever I need to do the next day.

There are more things, of course. There are dozens of things I can’t do by myself anymore. I can’t lift things. I need help to make my bed. If I’m in pain, I can’t walk my dogs. I sometimes can’t take out my trash. When I had a PICC line, it took me forever to do dishes in a way that didn’t soak my dressing and if I covered my site, it made it harder for me to use that hand functionally. Cleaning is really time consuming because I’m allergic to dust. And so on.

I can’t remember when I started losing my independence. It feels like there should be a moment, a specific point in time I can point to. There isn’t. It must have started slow and progressed that way for a while, the change so gradual it didn’t draw attention. And then one day I realized that I was dependent upon other people to execute basic functions of my life. And there was nothing I could do about it. It was like my house was burning down and I didn’t realize even though I was living in it.

Now I am dealing with the reality of again being completely dependent on others for several weeks of my life while undergoing and recovering from my surgeries. This time, I am doing it with the added complication of living alone. After my last bowel surgery, I couldn’t be alone for almost three weeks. I couldn’t lift anything. I couldn’t stand long enough to cook anything. I was at increased risk of anaphylaxis. I am fortunate to have many friends and relatives who signed up to babysit and care for me during that time. I am grateful to the people who cared for me then, but the complete lack of privacy and personal space during that time was one of the hardest parts of my recovery.

It is not lost on me how closely my current situation mirrors the lead up to my ostomy surgery, and how badly things went afterward looms heavily in my mind. Both personally – needing to move out of my apartment very quickly, my longterm relationship ending – but also physically. I wasn’t supposed to have obstructions after the ostomy. I did. The ostomy helped, but the reality that I still had so many problems was difficult. I know I need these surgeries, but I am preparing for the disappointment when new complications arise. And I would venture that the disappointment is harder than the physical recovery.

The last few weeks have been really stressful on pretty much all fronts. I’m taking this weekend to figure out a way to address that, as what I’m doing now is not sustainable.

I can’t be everything I want to be all the time. Sometimes I can’t even be a functioning adult for myself.