Goals Completed

Hi Gutsy Generation,

I wanted to give an update on how those goals I set out for the year went: I rode 200km with my sister in the ride to conquer cancer... I donated 15  inches of my hair to make wigs for kids with cancer... I flew to Grande Cache Alberta to participate in the Canadian Death Race with my team of 2 guys and I was ready to complete my portion of it but I didnt have the chance: my team member didnt make the cut-off time, so my team was disqualified.... not to worry.... the experience was amazing and I got to dance to Glass Tiger live outside surrounded by the mountains. I saw a bear and its cub :) - that was pretty cool. We ventured to Lake Louise before flying home and I felt I made up for not completing my goal in the Death Race by climbing a 9800ft Mountain.... it was amazing. I was scared to death at some points because when we got half way up we were confronted with a Bear sign.... we had to have Bear spray... and although we didnt see a bear... it was an exhilarating feeling thinking that we could possibly run into one. It was also pretty amazing using my hiking poles and at the top of the mountain, looking down at the little itty-bitty lake louise below us. I am so grateful for the health I have today and this experience I was able to do.

Goals are great, and without them I wouldnt have been motivated to push the limits... or strive to experience life more fully.

Hugs,
Ash

Try Again

Discharge attempt #2: cross your fingers, this could be a bumpy ride.

My grand total of a month in the hospital, with my less-than-a-week break discharge, on the 16th floor overlooking the Boston skyline has finally come to an end. Hopefully a permanent end, and not just a quick escape before I head back again. I have spent more time in the hospital than I have in classes. I have one class that’s only once a week that I have only been to once, my friend in the class texted and was like, “Are you still in this class?”

Thank goodness that I had fought to get and keep the PICC line and had insisted they save a line for TPN. A few nights ago when things were desperate and annoying and confusing, I felt like school was a hundred miles away and had no idea how I’d possibly get back there. And then it dawned on me - give me some TPN so I can get some bowel rest and some calories and let me go home while they figure out my insane gut. It took a lot of convincing and crying on my behalf, but the doctors went from having no intention of doing it, to signing off on it. It seems like a ridiculous fight just to return to classes, but if that’s what it takes, then that’s what it takes and I’m proud of myself for fighting for it.

Recovery is not my strength. I fight against it, wish it away, struggle with it constantly, and here I am about to wriggle through it once more. But I can only do my best, even if my best is less than ideal, but oh well.

The very hardest thing this past week has been not being able to go to Congress - the CCFC’s national conference. It is my favorite time of year, the most amazing and inspiring and empowering weekend and I cried many times over knowing that I wouldn’t be able to attend it this year. Yes, there’s always next year, but it doesn’t soften the blow for me right now. I hope everyone is having so much fun at Congress and taking lots of pictures for me to look through later on Facebook! 

So here I go again, deep breath, heart pounding, out to try again and make it this time.

Jennie

No Cigar

I was SO close - but no cigar. And when I say ‘so close’, I really mean it; I was out of the hospital, amongst the living, eating, sleeping in my own bed. But such things can apparently only last so long.

I woke up yesterday morning in severe pain and nausea and a barely full ostomy bag. My Mom, who had flown in to transfer me from the hospital to college life, was asleep on the air mattress on my dorm floor as I sat up and cried and knew that something bad was happening again. I got upset, emailed my doctor, then headed to my 8 AM class to distract myself and not to miss another class, came back to my room, and packed up to come back to the hospital.

As I was walking back from my class, my belly swirling in discontent and my PICC line and ostomy hidden beneath my clothing, I tried to keep myself from bawling on the street. I just want to be able to go to classes and get my degree and have my life, I don’t want to go to parties or college things like that, I just want to sit in a classroom without having an obstruction. Apparently it’s a whole lot to ask of my life at the moment. I don’t think there’s something to understand, asking ‘why’ is more painful because there are no answers that can soothe or satisfy me. 

As irony would have it, they’ve shipped me back to my old floor and my old room. The nurses looked at me with sad smiles and melancholy welcome back’s, I asked them if they’d missed me. One nurse came in and said, “Did you ever leave?” 

I have spent more time in the hospital this semester than in a classroom by far, have become an expert hospital packer (packed in under ten minutes for the hospital thank you very much), and know virtually every nurse on the floor. I have to believe that I will get my day (at least) in the classroom, come hell or high water I will stay in my classes and have my life. As of late my disease feels relentless and unfair and overwhelming and ridiculous. But one day it will feel a little better, even if it’s a fleeting moment, and I will be really close to having what I want.

Jennie

Thursday Instead of Friday

I have written blog posts for the past four Fridays exactly, and where has it gotten me tonight - but a rainy, and thundery Thursday in a Boston hospital, belly aching slightly and nestled into a bed full of blankets and pillows.

My life is like the current reminder on the television, ‘Please Stand By.’ When I came into the ER two weeks ago, I was planning on a 24 admission at most, but certainly nothing that involved a real admission and roommates and rounds of doctors and crying and needles and real pain and frustration, but just because I didn’t bargain for it clearly didn’t mean it wasn’t coming to me.

As always, it seems like my admission was a trial of complications and miscommunications - not listening to the 20 year old girl and instead of the doctors all of the time. But there has to be a compromise. This morning, the doctor came in and smiled and me and said, “You were right, weren’t you?” Duh, you think so?

There have been several times when I have collapsed in my hospital bed way too early to be considered a real bedtime (aka 7:30-8 PM), wrapped in a friend’s sweater crying, feeling utterly overwhelmed and annoyed and unsure. And once the tears were dry and I was able to speak without sniffling, I realized that all I wanted was a big hug and someone to tell me that they loved me and that everything would be okay - even if it seemed like a total big lie. 

I know that I am really honored with so many people that care about me, and yet I find myself completely incapable of asking for help. I think it’s a completely admirable quality in a person, I just can’t seem to rouse myself to do the same. I don’t need to prove anything to anyone, and yet was stubborn to my Mom insisting that she was coming to take care of me. But let’s face it - at the end of the day right now, I just want to be a little girl held by her Mom and being told that everything is going to be okay.

When nurses - who have been so lovely and wonderful - comment on my schoolwork and my tip taping away at my laptop, they say that I must be so organized and all of the like. And while that’s a very nice compliment, the truth is that it’s simply practice. Practice and determination, of course, but mainly good ol’ fashioned practice about how to be sick and be a student, the two are no longer mutually exclusive things.

I didn’t want to start my school year in the hospital, but then again, I don’t think anyone wants to start any type of life in the hospital. But it happened, and so life will go on. They found more Crohn’s - duh - they finally managed to get a PICC in for fluids - duh - and discovered that I was in fact the biggest expert of all - DUH. 

This post isn’t terribly anything - inspiring or exciting or whatever. But here is what it is - it’s a post on a Thursday, it’s a slight change of pace, it’s my determination to pick up and carry on and live the life I want. 

I was telling a friend the other day that this isn’t the life any Mom or parent wishes for a child, but by the very same token, it is not to say that it’s not a life worth living or a life that won’t be beautiful. It’s just one that will have more bumps in the road, more bruises in my hand, my scars on my belly.

Days can suck when you have IBD. And that’s okay. If we pretended that they didn’t suck, we’d be nuts. But days don’t have to - and won’t always - suck. So in the words of a good friend of mine, keep your chin up, your gaze steady, and your stride strong - you will get there (and so will I), IBD and all.

Jennie 

8 Years Running... and Still Tripping

On September 23rd, 2003, I was wheeled into the OR for my first colonoscopy. I was scared, I was young, I was in pain, and I was nervous about what was going to happen. When I woke up from the anesthesia and was met with my teary eyed parents and the diagnosis of Crohn’s, I had a sense that everything would be okay.

I have no idea why I felt that way. I think it was mainly because I didn’t know what having Crohn’s really meant, I thought it was something that required a yearly blood-draw or a pill and not the reality that so many of us have come to endure. 

But this post isn’t about reminiscing and being newly diagnosed and nostalgic. No, this blog post is about my current hospital stay. As per my last post, I had missed the first day of school with a blockage and had spent the day hooked up to an IV and chilling in a hospital bed. Come Wednesday of last last week, the 14th, my belly had grown tight and the pain began to spike. My goal was to wait and if I needed I would go to the ER after classes on Thursday (since one of my classes is only on Thursdays for 3 hours and I didn’t want to miss it, or my other classes for that matter). But life - or mine at least - never goes according to plan. I lived through Wednesday doing all of my activities, even having vegan pizza with my good friend Maya (because I love seeing her and because vegan pizza is AMAZING). Then I put on a Fetanyl patch, and went to bed. Come 6:30 in the morning, it was time to drag my sorry bottom to the ER and skip my classes. I was ready for another hefty day of fluids and loopiness from pain meds and draining my iPod battery, at least I was until they told me they were going to admit me. Oh. That was unexpected. I had none of my textbooks, no spare undies, no deodorant, and no idea about what I was going to do. 

It was only the second week of class and I was taking my second ‘vacation’ pass. Doctors began to flood in my room, to be honest they came in so fast I didn’t know all of their names or official titles, all they were interested in was my bag. My room is on the 16th floor and since I was the first person in the room, the porter decided that I was nice and could get the window seat. It is a beautiful, two-window view of the Charles - something pretty to look at if you can forget that you’re looking at it from a hospital bed. I was scheduled for test after test, and whisked off in a squeaky stretcher all around the massive hospital. My friend stole into my dorm room (well, okay, that’s not true, the RA was with her) to collect my books and important things (cough, cough, my computer and a season of Grey’s), so I was mostly all set.

I won’t bore you with the details of the tests and the other fun experiences I have had, but this is my overall experience/moral of the story. I’ve spent several days overwhelmed and crying - doctors had differing opinions (like polar different), I was here all alone and feeling very small and helpless and directionless. How do you rouse yourself to get back up when all you want to do is throw in the towel? I don’t know, but at the very least I knew I owed it to myself to try.

Today I will (this better not jinx it!) finally get my PICC line and some fluids (for the first time in over a week). I will finish some more homework/reading. I will watch some TV. I will revel in my joy about last night’s Grey’s Anatomy season premiere (SO intense, so good, so Grey’s). Soon, I will get back to my dorm room, back to eating (product placement is incredible and I really want anything advertised on TV right now), back to classes, and back to my life. Right now I’m in pain, I’m exhausted, I’m in the hospital, I’m drugged, but hey, I’ve got a nice view. 

Here’s the nostalgia if I may: 8 years ago today is a day I will never be able to forget. I can’t believe it’s been so long and more than that, I can’t believe how much has happened to my body and how much I have done in those years. As I grow older and continue to have ‘disease birthdays’, I know there will be even more things to remember, more scars, more stories to tell - and many, many more things to be grateful for.

Jennie

Are You Kidding?

Come Wednesday PM, I was sitting in my computer science class scanning over my notes when I realized it was happening again. Blockage time for Jennie. In the spirit of being an obedient GI patient, I waited out my blockage as long as possible and survived through the night, wanting to go to classes on Thursday. But 6:30 AM on Thursday had a different story - a ‘march yourself to the ER NOW’ kind of feel, and off I went.

Pain was worse, nausea was worse, I was upchucking on myself and felt like saying to everyone, Did you think I was kidding? Frequent blockage issues really mean frequent blockage issues. The absence of any decent veins with the combination of desperate need for pain and anti-nausea medication makes for a bad time.

This post entry is not long nor is it especially touchy - but here it what I hope it is: truthful. When I was waiting for my ileoscopy earlier today, I couldn’t help but burst into streams of tears running down my face; the pain, the frustration, the uncertainty, the aloneness - sometimes it’s all too much. 

I will be fine - as a good friend of mine recently pointed out, pain is inevitable, suffering is optional. And humor, well, I think that just might be a necessity.

Jennie

Welcome Back

Sometimes I’m convinced that I’ve mastered the skill of irony. 

Monday night was the floor meeting for my floor (let me just mention that it’s Pokemon themed, take it as you will) and I asked my RA if I could speak with her afterwards. I told her that I have Crohn’s and an ostomy and mentioned my blockages as an FYI in case I needed to escape to the ER in the middle of the night. She was very nice about it and told me to call her when it happened.

Midnight: Blockage becomes fully apparent to me. Nausea, pain, exhaustion. Call home to tell my Mom. We agree that I should try to wait for a bit and go in the morning.

1:30 AM: All ostomy output stops. Pain super intense. I sprung from the bed, got dressed, packed my bag, and called my RA.

2 AM: Arrive at Emergency Room.

4 AM: In a room, finally have an IV lodged in my left hand. 

I sat in my room, staring at the clock, only thinking about first day of classes that I was going to miss in a matter of hours. I was flooded with medications and virtually catatonic but finally a little more comfortable than a few hours earlier. 

16 hours after my blockage began, the fluids and pain medications fully in my system, I was feeling better and ready to run from my hospital bed and get back to campus. I was finally discharged (better than my planning of yanking my IV) and was in a cab back to the dorm. It was around the same time that I had left for the ER that I was returning to my room, it felt like a day had just been subtracted from my life. 

Isn’t it ironic that I told my RA about my blockages and then I’d get one a couple of hours later? Isn’t it ironic that I spent the first day of classes in a hospital bed? Apparently it’s my official welcome back to college.

And even though it’s a bumpy start, it’s the start to my year. Of course I’m nervous about how my health will pan out, but it’s so nice to be back on campus, running on the Esplanade and back with my friends. 

But however ironic or sad or funny or ridiculous, it’s my life, and my welcome back to campus. Junior year - watch out, here I come. 

Jennie

Three Years Running

Guy: “Welcome to the dorm!”

Me: “Thanks, it’s my third year in the same room.”

Guy: “Oh, well, welcome back then!”

On the monstrosity that is my university’s campus, I have inhabited the same little room for the past couple of years and will be living within those four walls again. After all, why mess with a good thing (aka a single room with a private bathroom - thank you intestine disease!)? After being there in that dorm for so long, I notice the small things, the new carpet in the hallway, the new lighting, and yet each year, I am both overwhelmed and comforted by the empty room.

Above everything else, it’s an empty room waiting to be filled with my things and a whole new year of memories. But it’s also a reminder of my freshman year - like when I spent Hallowe’en weekend in the bathroom with my IBD - or my sophomore year - like when I had my first blockage and was face-deep in my toilet - and now my junior year. I know that I’ll have a million great memories, and I’m a little nervous about what medical ones I’ll have.

Sometimes I find that when you’re on the journey of school or just life in general, you go through the motions, morning becomes evening, seasons change, and before you know it, you’re a little older. When I think back to the last few years, I am unable to really believe what has happened to my body and me as a person. But I think that if I knew then what I know now, it would only be more daunting. Because, it was possible - but that’s not to say that it was easy.

To everyone returning to school - good luck moving in (I hope you are a better packer than I am!) and don’t forget that you can do it and can have an amazing year. Every year is another opportunity to get to know yourself better and learn a little more about the world. Yeah, it sounds cheesy, but it’s true. I used to think that every year got a little worse: grade 7 was my diagnosis, grade 8 was Prednisone, grade 9 was being hospitalized, and so on and so on. But I think the truth is that every year is different, for everyone, but especially for those of us with a chronic illness. It’s the roller coaster we didn’t ask to be on. That’s for sure. 

But nonetheless, it’s the one we’re on. It may be a scary ride with a thousand twists and turns, and if we’re lucky, we can enjoy the view from time to time while we’re on the way to where we’re going.

Jennie

Guest Post: Erica's Story

As we continue our guest post series, we are excited and honored to share Erica's story with you. She has an amazing blog where you can find out more about her journey and her 'determination to heal.'

Stories like hers, and our other guest posts, remind us that we are not alone - but more importantly, that we are powerful.

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True Healing

I was a 24-year old doctoral student when I was first diagnosed with inflammatory bowel disease. At the time I was driven, perfectionistic, and proud of my intellect. I settled for nothing less than A’s on my tests and papers. I pushed myself to work hard even when I was sick with a flare. And I wouldn’t let go of any of my extra-curricular activities, including volunteer work.

After I earned my masters’ degree, I took a leave of absence and went to France with my boyfriend at the time. I experienced a long IBD flare while I was there, and after several months I decided to go on a meditation retreat at a meditation center near Bordeaux. There I started to feel more calm and peaceful. I stayed at the meditation center for almost six weeks and by the time I left, my mood and physical well-being had improved substantially.

I moved back to the U.S. after my relationship with my French boyfriend ended. I realized that I needed to have health insurance and I found work in Washington, D.C. I continued to meditate regularly, but meditation was not enough to keep me out of the hospital. In early 2001 I barely survived a severe flare of IBD. I was on short-term disability for several months following a two-week hospitalization, and I stayed with my parents in Indiana during that time. The corticosteroid medicines that I took seemed to exacerbate every feeling I had and I struggled with deep depression during my recovery.

I eventually went back to Washington D.C. and started working again. My old habits of perfectionism and workaholism came back in full force. I worked on Capitol Hill as a public health policy associate for a non-profit association that aimed to advance public health initiatives for people with disabilities, youth, and the general population. I got carried away with my work. Sometimes I even brought a laptop to the hospital so that I could work there. I still hadn’t learned to listen to my body.

A surgical team removed my entire colon in March of 2002. I had high hopes of long-term remission, but suffered from a severe IBD flare in my rectum less than a year after the surgery. At that point I realized that no one else was going to get me out of the vicious cycle I seemed to be caught in. I had to find my own way out. I asked my doctor if I could go on a long-term immunosuppressant, 6MP (I was seriously allergic to remicade). Three months after I went on 6MP I began to experience fewer IBD symptoms.

But my story doesn’t end there.

I continued to have mild to moderate flares of IBD for a couple of years, even on 6MP. I began to notice patterns. When I worked too hard and took things personally, my symptoms seemed to get worse. Researchers know that stress does not cause IBD, but it can exacerbate symptoms. There is even some evidence of higher levels of nervous system dysfunction among people with IBD than “healthy” people (I blame the corticosteroids!).

I decided that I was going to do everything I could to help my nervous system calm down. That sometimes meant quitting a stressful job and saying to others, “No, sorry I can’t help you.” I had to tune into my body and listen closely to its signals. What kinds of situations stressed me out the most? I decided that deadlines were not good for my gut. Of course there are only so many deadlines one can avoid in modern society. I planned ahead so that I wouldn’t feel so stressed when a deadline came. I practiced sitting, walking, and eating meditation regularly. And I took part in activities that helped me to really “be” in my body, like dance and Qigong.

I didn’t find the magic bullet cure that I had hoped for in the early years of living with IBD. But I lived a lifestyle that made me feel whole and full of vitality. I found out which foods triggered abdominal pain and avoided those foods as much as possible (it’s a long list actually!). I started taking high-potency probiotics that I believe helped my gut recover. I asked my doctor to test my levels of certain vitamins and minerals and we discovered some deficiencies, including vitamin D, so I took supplements. And I continued to avoid highly stressful situations or at least practice mindfulness when I encountered them.

I’ve now been in remission for over six years. My physician has found absolutely no evidence of IBD in my intestines. They look completely normal, and I’m currently in my second trimester of pregnancy. I’m glad that my body has recovered fully, but I’ll never forget the lessons that I learned during the years in which I lived with severe IBD.

I learned to let go of expectations for myself and for others.

I learned that compassion and love are more valuable than achievements and praise.

I learned that I could never be perfect, but I could become whole.

For me, true healing means lovingly accepting all of who I am and seeing how deeply connected I am to the pulse of life on Earth.

Erica

24 Hours

In 24 hours, I both left the land of the healthy and returned to it.

My last few days in Halifax before my return to Boston are filled with last-minute visits with friends, errands, and packing (that I have yet to do...). Thursday I had made plans with a couple of friends to meet up for lunch around noon, just enough time to head to yoga with my Mom in the morning. We were in the class when half way through it, I felt my blockage pain pulsate in my upper belly and just like that, I knew I was knee-deep in another blockage. Luckily I was on my mat closest to the wall, so each time we would turn to it I would make a face of pain and hold back tears. However stupid, I wanted to finish the class and when it was over, told my Mom that I was having a blockage and needed to get to the hospital.

But, what about my plans? I wasn’t going to see these friends for another six months, so I decided that I’d go and meet them for lunch and then meet her at the hospital. Stupid? Probably. But, I operate on a purely stubborn system and so I set off downtown to go to lunch. I even had some salad, what the heck I figured, it couldn’t make things worse (well, maybe). I dropped my friends off and set out to the ER.

They say French food consists of butter, butter, and butter. By the same logic, the ER consists of waiting, waiting, and waiting. Finally I was taken to a room and then the process of stabbing (aka putting in an IV) began. I was given a Johnny shirt to which I said, I’d rather not. The nurse looked at me and asked why, to which I replied that they weren’t very attractive - followed by the fact that I was in leggings and a t-shirt and could lift whatever needed lifting for their exam. She made me put it on. Why? Do I have to be in uniform? Apparently. I’d like to think I’m patient and whatnot, but when you’re coming at me with a very sharp needle and aiming to put it in the inside of my wrist, I’m not the happiest camper on planet earth. In my experience, that is the worst place to have an IV and then she proceeded to stab (I use the word stab because it was exactly that) my other hand for bloodwork. But bruises aside, the tasks were completed and I set about listening to playlists on my iPod as the fluids slowly dripped in. Pain medication is fully necessary during a blockage - or really, any painful experience - but they make me so loopy and like my head is going to float away, and then they make me want to throw up. I began to upchuck on my bed before a basin could find it’s way under my mouth.

But 8 hours and four bags of fluids and injections of pain meds later, I had turned my metaphorical corner and was feeling better. In my family, returning from the hospital means the traditional stop at Burger King for fries, even at 1 AM (thank goodness for 24 hour drive thru’s). They were delicious - even if I sat in the passenger seat throwing up as my Mom ordered them and then threw them up at home, they were delicious nonetheless.

I passed out in my bed, my head spinning with my impromptu ER plans. And with my head pounding with an incoming headache compliments of pain medications, I rolled myself in my covers and went to sleep.

My last 24 hours were eventful, but not the fun kind, the annoying Crohn’s kind. At the hospital, I said that I had begged for a port or some sort of permanent access line and that I never got one. My Mom said, “Well, that’s because we always thought it would be the end.” To which I replied, “It’s called chronic for a reason.” This summer I have been to the ER five times for blockages, which is a little much if you ask me. It can be difficult to stand up and pick up the pieces of my life after I keep being pushed down.

The land of the healthy is a lovely place to be if you can appreciate it. And sometimes, 24 hours is all it takes to do just that.

Jennie