A few months ago I wrote about how it felt like it was raining cats and bowel problems. It felt like everyone I knew was having some issues with their IBD/jpouch/Ostomy. Like for whatever reason, the IBD gods were smiting us all. It sucked.
Well now its raining cats and depression. I have countless friends that are going through deep and severe bouts of depression right now. Myself included. I’ve found that when I get depressed, like this, there are very few things that I want to do. Most of them involve self medicating and sleeping. Wallowing on my couch has been a favorite activity for the last month. And then talking to my other friends about why they are depressed and if/how we can help each other.
What I’ve learned about having depressed friends is that it is a blessing and a curse. Its just like having other chronically ill friends. Sometimes you can relate to each other so well, that its incredibly comforting know that at least someone out there kind of understands why you haven’t showered in 5 days and are ok living on a box of cheeze its for an extended period of time.
But other times, you tend to bring each other down and its a slippery slope. My friends and I try to check in on each other daily and if I’m having a good day and they are having a bad day, I’ve noticed my feelings can change. And the same vice versa. Sometimes I have to tell certain friends that I can’t be their support network right now because I am not strong enough in my own life. Being depressed almost always revolves around some level of being selfish. Maybe you’re ignoring your friends calls. Maybe you cancel plans. Maybe you’re not a listening ear when someone else needs it. I think all of that is fine as long as you just give people a heads up on why you’re doing it. I have told people lately, that I’m have a really difficult time in my life right now, so I find myself retracting and isolating, so please don’t take it personally. And that’s all I have to say.
Some days are ok. Some days I wake up already hyper focusing on negative issues and things that I can’t change. Those days I take a lot of Xanax and when I get home I have a glass of wine. Is this the “right” way to deal with it? Nope. But right now sometimes I have to just shut my brain off, and that is how I choose to do it. Depression is a weird thing that is unique for everyone. All that I really know is that its very difficult to crawl out from it and that a lot of people I care about are down in this hole with me. But I am doing what I can to crawl out, step by step, day by day. I take my anti depressants. I take my Xanax. I go to therapy. I talk to my friends and I try to set small daily goals so I can feel like I accomplished something. Sometimes that goal is just getting the mail but at least I did it.
Just know that many of us who are chronically ill deal with depression in varying degrees. Mild to severe. Frequent to periodically. I know that it does get better, even though it feels awful right now. It does. It will. In time.
I posted on the BPT facebook page earlier last week that I had pouchitis and that I was taking Flagyl for it.
Well…I got cocky.
I felt better within a few days and like a total dumb ass stopped taking the Flagyl after only about 5 days, only half of the recommended course. In the past this has worked for me, however I was not so lucky this time. It came back, and it came back angry. I noticed it again last Thursday but it really took a toll on Friday. I decided to start taking the Flagyl again but by that time the damage was already done. I laid on the couch most of Friday, Saturday and Sunday hoping to get less tired and feel better but it didn’t really help. So add in some person life drama, and drinking way too much coffee over the last few weeks and bam. Tuesday I checked myself into the ER for pouchitis and severe dehydration.
If you’re like me, you debate the ER for about 3 days before actually going. I called at least 4 friends to get their opinions. I even had my spiel for the doctors and nurses ready to go. It went something like, ” Hi, I have pouchitis and I’m dehydrated, just get me some saline and a CBC and I’ll be out of your way”. But we all know what never really works. By the time I decided to actually go, I needed to go. I got there and after I got taken back, and put in the hallway (which is so fun as a patient , I literally could not keep my head up I was so drained. I had to take a huge breath before speaking because I was out of breath, and light headed. If I had waited much longer, I probably would have needed a ride, and I hate having other people drive me to the ER. I hate inconveniencing anyone else with my stupid body.
So I get there and after about an hour and a half, I finally got my IV and my fluids. Shockingly it only took one poke, but of course it wasn’t after the nurse telling me over and over how small and deep my veins were, which generally just gets me primed to ask for another nurse, but she got it, and only after like digging around for a few short seconds. To her credit, I’m not even bruised. Well done over chatty nurse, well done. So here is the best/worst part of the ER. They only half hear what you’re saying. They asked if I had pain or nausea, and I really didn’t so I said no, or it was minimal. So when the nurse came back with my goodies she brought, saline, IV Flagyl, IV Benadryl, IV Zofran, and IV Dilaudid. I was like, well, I’m never one to turn down the fun meds so shoot up, but srsly….doctors of the world, does anyone listen? I was actually pretty stoked for the Benadryl because it would help me sleep, Zofran and Diladud are like a weird fucked up bonus.
This ER story is much like many others. They gave me drugs I didn’t need, the Resident treated me like I was an idiot, and the nurses were amazing. The end. I decided to stay in observation for a few extra hours just to get the extra fluids because I thought I’d go to work the next day. But I didn’t. I woke up feeling better, but still just so damn tired. So I stayed home and wished I had stayed in observation for 24 hours so I could have gotten the fluids.
I’ve decided to turn my life into a drinking game to keep myself hydrated. Wake up – Drink. Take a shower – drink. Pet your dog – drink. Check facebook – drink. Its really a totally blast. Actually, its not, I hate trying to stay on top of my hydration. I suck at it, because I drink enough water for normal people, but not enough for the colonless. So I’m posted up at work today with some pedialyte and a water bottle.
So what are the lessons we’ve learned from my mistakes?
Take your damn Flagyl for the whole course.
Also above all this reminded me that no matter how far I run, or how many programs Girls With Guts has, or how many degrees I get, or the fancy job that I have…I am still chronically ill. Not that I pretended not to be, or that I thought this was all past me, but I was doing so well for a really long time. And I got careless. The worst part about all of it, is realizing that this is my fault and it all could have been prevented. I realized a long time ago that I am not fragile, but it took this to remind me that I am not indestructible.
Today is World Ostomy Day, and it has brought up some interesting emotions and realizations for me. I want to share some things with you. Intimate thoughts, and unflattering pictures.
That picture is me before my first surgery. Very sick. Very overweight from steroids. Very scared. Very VERY horrified I’d have to have an ostomy. VERY embarrassed of myself and my life. Ashamed. I wrote about what I had expected my ostomy to be like here. I wrote that I hoped I’d look back with fond memories, and in fact, I do. Having my ostomy taught me humility, but more importantly it taught me to laugh at things I couldn’t control. I remember trying to maintain a positive outlook and I just kept telling myself, ok its just 9 months. Its JUST 9 months. 9 Months. Thats it, just get through it.
But then things started to change. Slowly, I wrote this entry just 4 days after my first surgery, and even here I was writing about how I didn’t like my ostomy, but I already felt better. I remember it felt so foreign on my body. I didn’t want to touch it or hear it, or see it, and if I heard that plastic crinkle it just reminded me of the bag I was now stuck to.
It seemed like it took forever for Surgery #2 to get here. There was 6 months in between surgeries, and a lot happened in those 6 months. I tried to return to work, but just couldn’t seem to get my head in the game. I lost my job and my pending time off didn’t really help my case either. I didn’t know a soul with IBD and I desperately searched the internet for friendly words and advice and the only place I really found to be helpful was Jpouch.net. You see back then, HONESTLY, there were 2 websites about jpouches on the internet. We’ve come a long way since 2010. I found a friend, Brevin, who told me about Camp Oasis and how he’d just volunteered, and I thought well, that sounds cool, I’ll look into it. I contacted my local CCFA and had an interview to be a camp counselor which literally consisted of my crying in our directors office because, for the first time ever, I was in the presence of someone who understood how lonely it was. She was telling me about camp and how the kids who come there feel lonely and isolated and that camp was a safe place for them. And I just lost it because I was desperately searching for something like that in my life. My first year at camp was interesting. At the time I really didn’t see how magical it was or how it had changed me. I even wrote that it wasn’t as good as I thought it would be. I didn’t leave with new best friends. I didn’t really leave any different than I had arrived…or at least I thought. What I didn’t know, and I didn’t see was that camp had changed me and empowered me in ways I never even realized. And I would really need what I learned there when my second surgery came and went and was unsuccessful. That first year at camp wasn’t about the people that I met, it was about what I learned about myself and that is what I took away.
Surgery #2 was supposed to be my second step and I was supposed to get a loop ileostomy and have my jpouch created and put in place to heal for another 3 months and then I’d be done! That didn’t happen and I was devastated and depressed and yet again alone. At that time, I had you guys. I had this blog and that was really it. I didn’t really connect with my camp friends that first year, and other than my family, I was so devastated. Thats the only word I can think of to describe how defeated I felt. I thought colitis was still winning and I just didn’t know what else I could really do at that time but crawl into a hole and stay there. And I did. For a long time. But I knew that if I wanted a jpouch someday, I’d have to work for it. Literally, I had 6 months and 40 lbs to lose before my surgeon would even try again. So when I could, I got a personal trainer and started working out. I WOULD have a jpouch. I WOULD get through it. And I did. I worked my ass off literally. I worked out like it was my job and I learned how to work out with an ostomy, and I learned how to talk about having an ostomy and about my life more in person. With real people not just to the internet. I explained my life and my ostomy to my trainer at the time and while I could tell he didn’t really get it, he still encouraged me. He wouldn’t let me say “If I lose the weight”, he would say “When you lose the weight”. He honestly taught me an amazing lesson in positivity. He taught me how to picture what I wanted and that the mental game is more than half the battle. It IS the battle. He is still my trainer today, and has turned into a really good friend. A friend that puts me in headlocks on a weekly basis, isn’t afraid to tell me when I look like shit, and make me work really hard. But a friend that taught me how to believe in myself, and that if I pushed, my body could do it. I could do it. Again, I didn’t know I was learning these things at that time, but I was, and these are skills I still have now.
Surgery #3 came around in March 2011. I did it. I lost the weight I needed to lose. I drove my ass back to Cleveland and I walked into Dr. Remzi’s office and I was ready. Let’s do this. I was never more prepared for a surgery in my life. I was mentally strong, and physically stronger than I had been in over 2 years.
The surgery came and went and was flawless. I left Cleveland in a timely fashion and felt like a damned rockstar. Until a day later when my stoma separated. And I have never been more horrified in my life. I had also been fighting that nasty ulcer, and that combined with the separation made me absolutely terrified. Again…I felt defeated. Would ANYTHING work properly? Would I ALWAYS have problems? So back to cleveland I went. Defeated. Frustrated. Angry. Depressed. But this is why I learned that sometimes, you don’t have a choice. You have to keep going, and trying because there is not another option. And as much as it sucks, you pack up everything you JUST unpacked, you call your mom crying, and you ask her to come over help. You learn to ask for help. You let you mom make phone calls for you, and then you have your Dad come pick you both up and drive you 4 hours right back to Cleveland. I think I cried the whole way there because I just couldn’t think of anything else to do. But right there, in that time, I learned how amazing my family was. I mean I knew it before then, but it was moments like this that I knew I’d never be able to do it all without them. I also learned that no matter how old I was, there would still be times that I wanted and needed my parents to come to my rescue and that it was ok to ask for their help and to depend on them because sometimes they wanted to be needed too.
So after that got taken care of, I went home mentally exhausted, but at the same time I knew that if I just made it until June, I’d have my takedown. I just had to make it 3 more months. And then I had an MS attack that took my vision and all of my optimism. I was told I’d have to push back my surgery…again. And this my friends, is when I lost it. Right there, that was my rock bottom. Physically and mentally overloaded and after years of just pushing through, I caved. Everyone has breaking point and that was mine. I retracted into myself, I stopped answering the phone, going places, eating. Everything. I learned why people choose to die over choosing to keep going. I learned that I had that choice too and it took me a while to choose to keep going. I had tons of support from everyone here, but at that time in my life, I had to choose to live on my own.
And I did.
During all of this I also found a new surgeon because I was having problems with my surgical team at Cleveland. And then…it was June. My takedown was scheduled for June 6th and when June 1st hit I had this mini identity crisis. I was so excited to take the next step in my IBD journey and try out my jpouch that I had worked SO hard to get. But at the same time it was like diving head first into the unknown. It was like my first surgery all over again, I was scared, and nervous, and doubtful that it would even work. I took tons of pictures of me with my ostomy because I wanted to remember myself in that place. Happy. Healthy. Confident. Proud. I wanted to remind myself that if I could feel this way with my ostomy, that I could take on the world with my jpouch.
I never posted some of these pictures, because its one thing to be confident, its another to post half naked pictures of yourself on the internet. But you know what internet, I look back at these and I see progress. I see a body that I worked hard to get, even though it wasn’t perfect. I see scars that are healing nicely. I see that I was starting to build myself back up.
Surgery # 4 was different.
I was so prepared for it. I was so ready and I thought it would be easy peasy but it wasn’t. It was a difficult recovery. But when I woke up in my bed the first thing I did was reach down to feel for my bag. And it wasn’t there. I didn’t feel relief. I wasn’t super happy. I actually mourned the loss of my ostomy a little. For the next few weeks I kept reaching down to touch my bag, or adjust the stool. I had created all these habits from having the ostomy, and I never even realized it. It was almost like a nervous tick, I just did things without even thinking about it, and now…I didn’t have to. It was weird. The other day I was actually thinking about how fast we create habits…and then how quickly we forget those habits. I probably stopped checking my “ostomy” just a few weeks after surgery. At the time, I felt like I’d always be checking for it. So quickly we forget.
I don’t want to ever forget. I remember my ostomy like I remember an old friend. I learned a lot from it even though it caused me stress and frustration. I am thankful I had it, because it saved my life. Having my ostomy introduced me to so many new people, and put me in many new situations that I would have never been in. IBD changed me, but I think having an ostomy molded me. It helped turn me into this person who I think is pretty great. Like I said, my ostomy taught me humility, but it also taught me how to be proud of myself and my accomplishments. I learned about my own personal drive in life, and my passions. My ostomy took me to new places, and I’m not just talking about an OR table, or comedic situations that would make that scene from Bridesmaids look like a disney movie. I’m talking about the places I’ve gone, the people I’ve met, and the places that I went in my own evolution.
Today is World Ostomy Day, and on this day every year, I’ll remember how I got to where I am. I actually kind of wish I had an Ask Me About My Ostomy shirt because I am more than happy to tell anyone about my front butt that saved my life.
Wouldn’t it be great if when someone said, “I’m going for a scope tomorrow”, it meant they were getting a sweet telescope. That they were going to spend their day anticipating the next starry night, instead of drinking clear liquids and shoving enemas up their butthole?
I’ve been due for a scope since June 6th, which was my year post take-down assiversary. I however, promptly celebrated by eating cake and did not have a scope. July…no scope. August…no scope. September…no scope. You see where I’m going with this.
“The time has come”, the walrus said. I’m pretty sure walruses don’t have to get scopes, so he wasn’t talking about a camera up his big ol’ walrus butt.
I’m being a cry baby. I know I should go get my check up, and that I should waltz on in there and be all “Ok here’s my ass, shove a camera up there”.
BUT I DON’T WANNA.
I have successfully gone almost a year without getting ANYTHING shoved up my ass. That’s like a freaking Guinness book world record for IBD patients. A whole year without any fingers, tubes, camera, pills, NOTHING.
And now..my “winning” streak is ending. In our world…a year with no butt intrusion is winning. Take that Charlie Sheen.
So tomorrow, I shall do my stupid scope. Awake.
I KNOW. I vowed to NEVER ever do that again, but this is a pouchoscopy, which means its short and sweet…or so they tell me. And as much as I’d love to get knocked out an anesthetized tomorrow…in lieu of taking the whole day off, and making someone else take a whole day off to cart my doped up ass around, I’m putting on my big girl pants (well actually I’ll be taking them off), and going to go do this stupid thing awake.
Also…its not until 2:45pm. Also…I have to work the morning before.
So I will not be taking the recommended 2 enemas before hand. Why? Because I have a jpouch damn it. It’s practically a build in enema…nothing stays in there more than a few hours anyway. AND…because I’m a rule breaker. I do what I want.
Tonight I had my “go to” clean out meal…a double cheese burger meal, and I’m sure in a few hours I’ll be all kinds of cleaned out.
Secretly though I’m kind of hoping that while I’m sitting there on the table, staring horrified at my own ass as the camera gets closer and closer, that when the scope is all up there doing its thing, perhaps we’ll find the Hamburgler stuck up my ass.
As a sick person…you seek out a doctor. It’s your hope that your doctor will have the answers and in return for their years of schooling, and your copay, they will tell you what is wrong with you and how to fix it.
Most of us are not doctors. Though at times we often feel like we know much more than they do, but the reality is we are not medically trained.
So…how do you tell a doctor they are wrong?
My adorable niece, D, is two and a half and for the last couple weeks has been exhibiting some strange stomach discomfort and weird poops. Naturally, for my family this throws up red flags all over the place. My sister, her mother, has been picking my brain about what to feed her and the details of her poop, what it looks like the consistency, the color, etc. Strangely enough, I am happy to be the poop expert for my friends and my family. Especially little D.
My sister has taken D to the doctor, and submitted a stool sample but has been told it would be 5-10 days before they had an answer. Poor D has been on the BRAT diet for over a week, and for a kid who lives on milk and yogurt, it hasn’t been easy for her. Judging by her symptoms, I do not think that D has IBD.
When my sister asked the doctor at the family practice (who just so happens to be my lady doctor), about the likelihood of D having some form of IBD, the doctor which we both know and trust replied that she doesn’t have IBD because kids of her age do not present these diseases.
Well…being an informed patient, I just so happen to know that this is wildly wrong. So wrong. So so wrong. Is it less common? Yes. But impossible? Not at all. Tell that to my kids at camp who have had IBD longer than I have by the time they’re in the 4th grade. Tell that to the parents of Elijah…who not only had UC as a small child but had it so severely he’s had a colectomy.
I just so happen to have an appointment with this doctor later today and I feel like its my job as an activist and a patient to correct her. However…I’m not a doctor. Is there a tactful way to tell your educated, trusted doctor they are wrong. So wrong in fact, that they could potentially be doing damage to their patients by neglecting the potential severity of their problems?
I have been asked many times why I am an advocate or why I spend my free time and money on raising awareness for IBD. I have a long winded, drawn out answer for this question and depending on my audience it can be really inspiring and technical, or loaded with swear words and jokes. I like to think that I understand my audiences. I have this same strategy when people ask me what a Jpouch is. I have loaded responses ready to be verbally vomited into the ear canal of the unsuspecting question asker. Depending who asks, they will either get my medical jargon-ed response, or something about how my colon is gone, yadda yadda, new internal plumbing, yadda yadda, wham bam poop chute answer. I’m really quite eloquent with words.
I heard that from a homeless guy in downtown Detroit once. I thought it was clever. Clever enough for a buck.
I was asked recently if I take donations for my site. I didn’t…but not because I’m against money but because I never thought about it. So I set up a donations button through Pay Pal and slapped it on the right side column of my blog. Now lets be clear, I am not ASKING for donations. In fact, I think that sites like mine that ASK for them is kinda weird and I’m all “what the hell are they spending money on anyway”.
It does cost money to run this site, not a lot, but since I’m living on grilled cheese as it is, it is enough to be significant in my life. So what I’m saying is, if anyone out there feels so inclined and wants to pay my mortgage, who am I to stop them? I mean really, that would be rude.
Also in case you’re wondering my mortgage is about $400/mo. So cheap, right? Wouldn’t break the bank for you at all. KIDDING.
No seriously, the idea of accepting money from strangers to pay for hosting and what not on my site is a weird thing for me and makes me mildly feel uncomfortable. But I wouldn’t have made it possible if someone didn’t ask me to do it.
Stop being all judgy. And start being more spendy. Kidding. Again.