Phantom

I have always been fascinated by both the human body and the diseases that affect it. When I was about ten years old, my parents bought me a medical dictionary. I read it cover to cover. I wrote little stories about people with Legionnaire’s Disease and Tetrology of Fallot, describing the symptoms and treatments in vivid detail.

It was in this dictionary that I first read about phantom pain. It always made a weird sort of sense to me. Bodies are creatures of habit, just like us. Of course your body expects to have all of the parts it started with. Of course your brain would assume it was merely misinterpreting signals when suddenly a limb was missing. The alternative was too awful to consider.

It never occurred to me that the body could experience phantom pain from a part of the body that was never supposed to exist. As soon as my epidural line was pulled five days post-op, I started having severe sporadic pain where my stoma used to be. It was distinct from the other pains – the burning in the lower colon, the sharpness in the rectum, the soreness near the incisions.

This was something different. It felt like when my body tried to pass stool through the stoma, but couldn’t because of an obstruction. It was the same exact same sensation. My body remembers the route of a path that should never have been there to begin with.

I lived 29 years without an ostomy. In the two years that I had it, I believed it was the best solution for me, and for most of that time, I believed that I would always have it. The only way to survive was a radical acceptance of this defect. I told myself that this was the best option for my body and I made myself believe it. I believed it so much that even my body was convinced.

I still have a wound where my stoma was. It is closing slowly. Mostly the pain is manageable; I know it will never really go away. Several times a day, I feel my body mimic the pressure of an obstruction behind the stoma, the twisting and lines of pain spiderwebbing into my lower back. The pain isn’t real, but my brain won’t believe it.

Phantom pain is notoriously resistant to pain medication. One of the better options is the use of psychological “tricks” to convince your body that it is still intact. I am thinking about how to do this. But I don’t know which version of my GI tract my brain thinks is real.

 

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.

 

 

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.

Real talk about ostomies

I was driving around the internet at 130 in the morning as you do when I came across a petition on change.org. The petition is asking the CDC to stop airing an ad in which a smoker develops colon cancer and discusses wearing a colostomy bag. Here are some quotes from the salient portions:

“In this ad she refers to having to wear a colostomy bag for a year which is “smelly” and because she fears leaks she doesn’t leave her home. This may or may not deter people from smoking, but in the meantime, unnecessarily sheds negative light on people with ostomies.”

“The negative stigma that is spread by this ad is itself a health threat. Fear of being stigmatized, including the extreme negative body image that our society has placed on those with ostomies…”

“…it sends the wrong message to the general public, at a time when those of us who have permanent ostomies are trying to educate others about this condition.”

I have a lot of feelings about this.

The first is that yes, I agree that ostomies are stigmatized. I think this is less of a problem than it was years ago, but ostomies are still not very common and people are unfamiliar with them. It changes the way you look at your body and makes the process of waste elimination a very graphic part of your daily life. It is difficult for many people, and many people elect not to get ostomies because of that.

However, I completely disagree with this idea that ostomies are totally palatable, because that is simply not the case. I feel like this petition is saying that this woman is being dishonest in portraying the colostomy bag as being smelly or leaky. The fact is that they often are. And while I agree that ostomies shouldn’t be stigmatized as they are medically necessary for many of us, I don’t agree that we should gloss over the realities of living with ostomies in order to get there.

I have a colostomy. It was placed two years ago with the intention of being permanent. Due to some further complications, I am having my colostomy reversed, which may result in the later placement of a permanent ileostomy. The likelihood of my needing an ileostomy at some point is significant.

I use a two part pouching system. One part, called the wafer, is a ring that fits around the stoma and is adhesive, so it adheres directly to my skin. The second part is the colostomy bag, which has a ring that snaps into the ring on the wafer.

Colostomy bags are either disposable or reusable. With disposables, you throw the entire thing out and put on a new bag when you stool. I use reusable bags that can be emptied by unrolling the end of the bag, called the tail. The stool is then pushed out of the bag into the toilet while the bag is still snapped into the wafer and attached to your body. If your stool is really hard most of the time and doesn’t really come out of the bag well through the tail, you may end up removing the bag from the wafer and emptying it through the hole in the back, then reattaching the bag.

Ostomy suppliers make deodorant that you can put in the bag. It works okay. It doesn’t work great. If I am dressed, on an average day, you will not smell stool. If I am walking around naked, I might smell it. However, I find the deodorant is not very effective for gas. You cannot control gas when you have an ostomy in the same way that you cannot control stooling. So you can pass gas at any time and yes you can hear it and yes it smells. Another thing many people don’t realize is that the closer the end of your GI tract is to your stomach, the worse the stool smells. I can’t really think of an appropriate analogy, but suffice it to say that stool and gas smells much worse when you have an ostomy.

Disposables don’t tend to smell as much because there isn’t really enough time. Smell is more of an issue for people who use reusable bags. So why do people use them, right? Mostly insurance. Most insurances will pay for 20 reusable bags a month or 60 disposable bags. So either change the bag every day and a half or throw out the bag twice a day. What if you go to the bathroom more than twice a day? Most places won’t allow you to pay cash for more bags, so people who use disposables generally use larger bags to hold more stool, which is more visible and may smell if it is full.

Side note: You have not known fear until your insurance is refusing to approve your ostomy supplies and you won’t have anything to poop into in three days.

Ostomy pouching systems are pretty clever but they are not perfect, so they sometimes leak. One kind of leak is when stool doesn’t go into the bag completely when you stool and so some of it gets under the wafer and onto the skin. This is much worse for people with ileostomies where the stool is much more liquid, but it happens for colostomies, too. It happens at some point to everyone who has an ostomy. Stool on the skin can cause infections and also causes literal burns, which feel awesome and take forever to heal because you have to keep applying adhesive to the skin whether or not it is in bad shape. It’s a sucky situation.

The other kind of leak is when you poop so much that the force pushes the bag out of the seal the rings make and the stool literally leaks out. This mostly happens when you suddenly get diarrhea, like during anaphylaxis or a sudden onset bad mast cell reaction. This has happened to me a few times. It actually happened to me recently while I was on the train to work. I walked to a Starbucks and threw everything away and threw my tights away and cleaned myself up and went on with my day. But yes, if you have a colostomy, there is always a chance that you are going to poop on yourself on your way to work. And yes, that affects the decisions that I make regarding travel and transportation.

Pretending that people with ostomies don’t have these issues is both disingenuous and not helpful. I agree that all medically necessary things should be accepted by society but trying to convince people that ostomy bags don’t sometimes smell is not the way to do it. I hope someday insurance companies will stop being dumb about pouches and we will have better supply options or treatment options that don’t involve surgically created openings to the GI tract but you get what you get.

I live a very full life and having an ostomy has not prevented that. But it affects my life and it affects the lives of all ostomates. You shouldn’t be ashamed of your ostomy, and I am certainly not, but pretending that they don’t create gross or socially awkward situations is not progress. It is a different form of being closeted. So I do not support this petition. And I will not be signing it.

 

Horizon

The last couple of months have been really stressful. Several of my work projects are all requiring a lot of attention right now. I am trying to iron out some details around MastAttack and make plans for the future. I live in the grey bleakness of New England in the midst of a record breaking winter. I am having some setbacks regarding GI function and pain.

And of course, I am having surgery soon. The amount of feelings I have about this surgery is surprising given the fact that I have always expected to have it. I don’t know. I guess it just seemed further off. The horizon seems so far away until you’re standing on the edge of the world, about to fall off.

Bowel surgery when you have mast cell disease is a complicated affair. I have to get buy in from all the relevant specialists and they all have to agree on a plan. I have to schedule surgery when everyone is in town and not taking vacation in the near future. I have to arrange care (nursing and otherwise) for weeks after I leave the hospital. I have to finish up several work things before they operate. I want to get some things lined up for MastAttack before I go.

My surgery was scheduled for April 28. I saw my surgeon this week to go over everything. He is not convinced that removing all of my colon is the best move. I am going to repeat some motility testing. Specialized testing generally takes weeks to get scheduled. Which would literally give us the results days before my scheduled surgery date, and that’s cutting it a little close for me.

I scheduled all my testing, then called my surgeon’s secretary. I rescheduled my surgery for mid-May. I am frustrated that there is still disagreement so close to my surgery date, but I understand why. We can’t just look and see what happened to the last twenty people like me who had their colons removed. There just isn’t anyone like me.

Part of why this whole production has been stressful is because I saw this coming a mile away. Needing my colon removed is not a surprise. We discussed removing more of my colon when I had my surgery in 2013 (I still have about 70% of my colon).   We weighed the pros and cons then, so I feel like having a similar conversation two years later shouldn’t generate so many questions. But things change, and my body has changed, and I have changed, as a person. What I want now is not the same as two years ago.

I thought pushing back the surgery would make me mad, but it really didn’t. It was a relief. I immediately felt calmer. It gives me time to make decisions without pressure. It gives me time to take some time for myself and focus on the things I care about.

If the amount of messages I have received are any indication, the weight of my life in recent months has been apparent to my readers. You guys are fantastic. You are so sweet and kind and respectful of my time and my feelings. I really feel so privileged to be part of this thing we are all doing together.

It has not escaped notice that MastAttack is turning into a much larger undertaking than I could ever have anticipated. I think some people are worried that I write these posts and answer questions out of a sense of obligation. A few weeks ago, I took a week off from the blog. I didn’t research or write anything about mast cell disease.

But at the end of the week, all I wanted to do was write posts about mast cells and diabetes. Not because I felt like people would be upset if I didn’t. Because I wanted to write it in case it was helpful. And because I like doing this.

In the last few months, this amazing thing has been happening. I am getting questions from people that are very nuanced, that show a really good understanding of the biology involved. Some of these questions are coming from people who have progressed a long way in their understanding of this disease. They are questioning me and bringing up findings from papers I haven’t read or correcting me when I get sloppy with the details. It is so cool. We are getting somewhere. This is getting to be bigger than me. And that was always the point.

I’m going to tell you guys a secret. I don’t want to be doing this in ten years. I don’t want to be writing articles or posts or reading literature constantly. In ten years, I want all this information to be available in a concise, easy to digest form for anyone to use. I want so many people to know everything that I know that I become obsolete. It’s starting, and you’re all part of that.

Along those lines, it’s time for me to get some help with all of this. I’m taking some people up on offers to help out, and will be asking for help with specific tasks in the upcoming months. If you think you might want to help, feel free to message me on FB or send me an email. There will be more details in future posts.

As for me, I’m feeling decidedly less stressed than I have in a while. All of my work stuff will either get done or it won’t, and all of my blog stuff will either get done or it won’t.   I’ll have surgery and I think it will help. And if it doesn’t, it doesn’t. The risk of ending up with a permanent ileostomy is scary, but not trying to remove a huge source of inflammation and live without an ostomy is scarier. You can’t be afraid to try.

In the meantime, I’m taking some time to relax before this next stage of my life begins. I’m going to Florida to visit a dear friend (and Disney!) later this week. The week I was supposed to have surgery, I will be going to California to visit Team Addie, my mastsister Addison and her family. And deciding to do those things felt warm and peaceful. It is exactly the right medicine for this weariness.

So I guess what I’m trying to say is that I appreciate all of your support. And I appreciate all of you individually more than you know. Every time I see someone jump in with the right answer or a message of support, I am honored to be part of this. And I’m so thankful and touched by your messages of concern and support. It’s nice to have people to catch you once in a while.

Sometimes things are hard, but everything’s gonna be okay. Okay, or better. It’s like my guarantee.

 

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.

 

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.

The truths I ignore

I had an appointment with my surgeon today. I need to have my rectum and some colon removed. It no longer has function and I essentially have a mast cell twist on diversion colitis. This has been coming for a while.

We talked about what the surgery entailed, healing time, mast cell precautions and how to suppress anaphylaxis in the days after the operation. Never once did he remind me that removing this tissue means that I will never be able to reverse my ostomy. He knew I knew. I was glad he didn’t say it.

“I would never reverse my ostomy,” I told his Chief Resident during the appointment. And that’s true. I never would. I would never want to again be in the position I was before I got it, where my life was one long GI nightmare of amotility.

I am not often surprised by my doctors, but today was one of those rare occasions. Everything that needs to be done can’t be done at once without the likelihood of complications. This means I will get the majority done during one surgery, after which I will be in the hospital for about a week, and will recover at home for 4-6 weeks. Then I will likely need a second surgery.

We set a rough date, agreed to meet again three weeks before surgery to go over everything again, and I left. I hurried down the hall past the brown wooden doors and turned quickly into a single stall bathroom. I locked the door and put my hands over my face just as the tears started, hot against my reddening cheeks.

I would never reverse my ostomy because I would not be able to function without it. I mean it every time I say it. But knowing logically that there is no reason to keep the rectum and excluded colon doesn’t make me feel less robbed. It was easy to pretend that I wouldn’t always need it, even if I only pretended with myself.  I just slammed the door on my last tiny chance at normalcy.

The reality of having an ostomy for the rest of my life is something I have avoided dealing with emotionally for quite some time.  I talk about it a lot, without embarrassment, but it sort of feels like I’m just trying to make myself feel better about this decision two years later.

There are some truths I have to ignore to survive. I have to mislead myself to be able to love the world again every morning.