The Things that Keep Us Going

It’s only been a few weeks after my ileostomy reversal and things have, mostly, been rough. I’m back at the hospital with ileas, a condition where your bowels stop working or “go to sleep”.

People keep telling me that I’m strong and amazing for enduring so much and keeping such a positive outlook but I think that the people who tell me this, though I appreciate their encouragement and acknowledgement, don’t understand quite how this kind of pain can truly paralyze you as they never really get to see it.

I smile daily because God has placed people in my life who are kind and gracious enough to absorb a large chunk of my pain and fear. I’m never alone. If my mother isn’t by my side holding my hand, looking at me through the most loving eyes, then my husband is by my side, petting my head telling me stories that will inevitably cheer me up. These two people are always around, always. But, my support system doesn’t end there; I have an older brother who treats my disease like another kink in the system that we need to fight against. He always makes me feel young again, and he’s 7 years older than me. My father always reminds me that I belong to someone; he doesn’t quite understand what I think about my disease and trial and I often think that my entire mindset eludes him, but he never hesitates to remind me that “everything is going to be ok” even when I don’t need to hear it, and subsequently he is unintentionally telling me that I will always have people who love me so much that they will fight to make this ok.

The hardest thing about this moment is the memory of good health after my first surgery. The most tempting thing to think right now is that this was all a mistake and I never should have embarked on this stupid trip to abdominal perfection; I was content with a permanent ostomy.
But, my family constantly reminds me that we are a team and we are stronger than UC can ever be.

I love my team; they keep me going. And, I got lucky because this isn’t just any team, they’re a winning team.

Almost a Year

I didn’t write much after I had my sub-total colectomy; life kind of just started happening and I didn’t want to miss a beat. Now, here we are, almost a year later and I’ve completed all 3 steps of my J-Pouch creation. On February 11th, I had my ileostomy reversal, or “takedown”, and am now readjusting to a stoma-less life. Looking back, I wish I took more opportunities to document the experience, but I intend to make up for that. This blog means a lot to me, it has as early as its conception; unfortunately, I haven’t had many moments where time and strength were simultaneously available to me. I look forward to the coming months, as I recover to take the time to invest in this blog and my fellow IBD community. It’s hard to believe how far I’ve come and how much my family and I have endured, but when it settles in, it’s hard to be anything but immensely grateful. I know that there were many angels along my path who guided me and if I can be a beacon or encouragement to a small few, that would please me greatly.

Thanks for reading!

Thoughts on Chronic Illness & Those Who Share it With You

A few days ago I took this blog down. A remark made by someone close to me made me start doubting the entire reason I started this blog. I never intended for this blog to be a place where I vent my frustrations; for that, I have a journal, family and friends. Airing my personal troubles on the internet is not something that I am fond of doing. My hopes for this blog was to create an area where those who are afflicted with IBD can come to learn about the experiences others have while sharing their own.

It took a lot of thinking to figure out whether I’ll bring the blog back up (and I’m still not entirely positive in my decision) and a big part of this made me realize how this disease has impacted some of my most important relationships.

I read an article once in which a chronically ill person compared having a chronic disease to having a gorilla follow you around everywhere. It might sound silly to those who aren’t familiar with chronic illness but it’s painfully accurate. Read about it here: “The Gorilla In Your House”.

Chronic Illness becomes a part of everything you do. You simply don’t have the option to turn it off. It changes the way you relate to the world and the people in it. It often requires more attention than you have to offer. Chronic disease is demanding and it likes to get its grubby hands on all that matters to you.

Understanding chronic illness is not something that everyone is good at. It often is truly debilitating and this is a fact that is very difficult for some people to accept. Especially, if you have an invisible illness (like I do) then most people don’t even believe you when you tell them just how sick you are. Once in a while, we are blessed with a person in our lives who expects nothing from us and whose love for us just grows stronger when we are in need. These kinds of people will never make you feel like a failure for having a disease that has severely limited you. These kinds of people are the kinds that help you make it through.

Sadly, not everyone has the capacity to love in this manner and most people will take notice of each time you’ve failed them because of your disease. Once you have a chronic illness you become much less able and, in most relationships, this will breed resentment. Sometimes, it just looks like you’re no longer interested in anything but yourself and have found an excuse that you can permanently stick to. Those who truly suffer from any kind of chronic illness know that this is not the case. But there is no way to convince someone who doesn’t understand how illness can affect you that you aren’t being selfish, that you’re just being sick.

Having a chronic disease will be difficult on your relationships, but it will also be revealing. Enough time being ill and you’ll know who is self-interested, who truly loves you, who is patient, who is kind, etc. It will shine a bright light on all those around you, yourself included. Many relationships won’t survive a chronic disease, but the ones that do are worth cherishing forever.

The best advice I can give is to not allow your chronic illness to turn you into someone you don’t like. You might not be able to work as many hours, or cook and clean, or go out and be fun anymore. But, you still have it in your full control to be kind, patient and loving (even if those around you aren’t). Your attitude can lighten both your burden and the burden of those caring for you.

I’ve learned to stop fighting against my gorilla. I just made a room for him in my home and decided that I will not allow him to make me angry and bitter. If I can learn to deal with my gorilla, I hope that those around me can as well.

Goodbye, UC!

I’ve been gone a long time. I’m sorry, mostly because this is just another thing that UC stole from me. But, I endeavor to get it back. The last post I started writing was mid-February. So much has happened since and I have every intention to make what I learned useful to others.

For now, an update: on April 21, 2015 (my 27th birthday) I had my colon removed! It was one hospitalization after the other before that. For 7 months, even after the c. diff infection cleared, I was in the hospital with the exception of a few days (if lucky) in between week long admissions. Doctors were painfully difficult (that’s for another time) and in April it became clear to me that I want nothing more to do with this kind of lifestyle. I asked my GI for a surgery consult, inpatient. My GI wanted to be thorough. He had a talk with my surgeon and an IBD expert and they decided that the best route was to confirm, visually, the progress of my disease. They schedule a scope for the next day to see if the Remicade infusions have helped.

I spent that night in excruciating pain, vomiting without end. Even though I was receiving pain medication, it wasn’t touching my pain at all and no doctor cared to fix that. It was a relief to have a scope because the anesthesiologist dosed me up with Fentanyl until I felt no more pain and then put me to sleep. I woke up in my hospital bed with my mother by my side. She told me that the doctors said there was absolutely no improvement and I knew that this was the best thing I could hear. It meant that surgery will be approved and at this point, I was praying for surgery.

I met my surgeon and his team the next day. They were all very kind and wonderful people. When the surgeon told me that I will be having surgery in 2 days, I welled up in tears of joy. My husband came to visit me that day and he found me walking in the hallways for the first time in days (my surgeon advised as much walking as possible before surgery). I cried when I told him about the surgery because I knew that it would change my life. I just wanted to go home and stay there.

Surgery was a huge success (I’ll discuss the details in another post so that people know what to expect if they are expecting to have a colectomy). I’ve been home for over a month. Not only have I been home, I’ve been feeling great. I’m finally tapering off of all my pain medication. I have gone out several times. I can travel to visit my family again. I can eat. I have energy. Things are slowly turning around. I’m slowly getting my life back.

It’s not easy to bounce back from 4 years of debilitating disease and 7 or 8 months of hospitalizations. It’s emotionally straining, on me and everyone who cares about me. It’s hard to get back into things, even relationships take a toll that isn’t immediately reversible. But – I couldn’t have asked for anything better. My body is recovering well and my heart will catch up. I kept a smile on through these 8 months. There were many moments of fear and uncertainty. But, I was able to find a reason to smile each day. If I can make it out of that, I can definitely recover from it.

I’m not completely free yet, but by the end of 2015 I will finally be part of an elite group of people called “the J-Pouchers” and I will be UC free.

How C.Diff Stole the Last 5 Months

Written Feb 17, 2015 | Published a bit late, sorry!

If you’ve been keeping up with my blog, you might have picked up on the pattern that I’ve been spending a lot of time in the hospital. As we stand now, I have spent the majority of time since August 2014 in the hospital. Constantly recurring c. diff infections have kept landing me in the hospital. My GI made the call to stop all of my UC treatment to give my body a chance in fighting the infection. In order to treat my UC I was on several immune suppressors and it’s incredibly difficult to fight a strong infection that way.

Though I’m grateful to say that I’ve finally beat my infection, I still haven’t been approved for restarting treatment and the fear of ending up back in the hospital is constantly lurking. In this time, I’ve been abandoned by the few good doctors I’ve found due to being a patient difficult to treat due to my constant hospitalizations. If you’re thinking that it is incredibly backwards that a doctor would drop me because I’m so sick that it require constant care, well, join the club. I still don’t understand it but I’m stuck picking up the pieces, trying to find a medical team that will follow me.

This wasn’t a blog meant to complain. I just wanted to explain my prolonged silence. But I also want to say this: Yes, the past months have been so incredibly difficult.

Hospitalized, Again

I can’t believe this. I was doing so much better. I almost hit the 2 week mark at home. Suddenly, the day I’m due for my infusion, i end up in the ER. Except this time it isn’t my regular hospital. I went in nervous but they couldn’t risk the 30 minute drive to my usual hospital and had to take me to the nearest one. To my surprise, ER was great. But I was suddenly moved to an observation ward and, I swear, this place is the 7th layer of hell. If i were admitted I would get proper care, but here, I get no pain medication and I’m not getting antibiotics for my c. Diff infection. This is a reality that scares me becuase I don’t want it to come back with a vengeance. It’s been a tough 24 hours and I’m just desperate for a break.

When will this end?  When will I be able to go outside and enjoy my life?  When can I get dressed up and look pretty?  When will my life stop being one trip to the hospital after another?  I’m exhausted and I feel so terrible for what I’m putting my family through. They’re so incredibly grateful and I have no idea how to lighten their burden. I’m tired and I need a break.

 

 

The Friends We Make

Being sick is more than just being sick. Suddenly, your life has countless of unexpected limits and one of those is on your social life. Any one who is chronically ill, or close to someone who is, knows that your calendar is filled mostly with doctor appointments, call back reminders and few tentative social events that you’ll likely be canceling on 40 minutes prior to. No, the chronically ill aren’t lazy or anti social; they’re just sick and quite often the uncontrollable spikes come with little to no warning. On the outside you end up looking like an antisocial flake, while really you’re lonely and wish you could put on your heels and go dancing.

Some people are luckier than others. I’m on of those. I have the fortune of sharing life with people who are very compassionate towards me in this regard and take with great importance each small attempt I make. Most people though don’t understand this and it results in alienation. I’m not entirely exempt from this either. I’ve been unable to make an old friends birthday celebration for the 3rd consecutive year, and while she still invites me (sweet of her) she probably does so with little expectation. It has been a very long time since I’ve been able to hang out with friends. The past year has been the worst since diagnosis and it has real reflected in my social life. I can bare;y go out on dates with my husband even.

As you can imagine, it’s extremely isolating. But I got lucky. In the past three years I’ve managed to make some amazing friends that without, this disease would be far more difficult to navigate. A few people from a support group have made such a vast difference in my life that I wouldn’t dare imagine life without them at this point, even if I went into remission and didn’t have another day sabotaged by UC.

Early on in my diagnosis I searched the Google play store for an app that would help me track the day-to-day details of my individual disease activity; and I found a great one, GI Monitor. There was a “socialize” tab that I generally ignored until curiosity took over and one day I started exploring. Reading the open forums showed me that these people were mainly kind and helpful so I proceeded to introduce myself. That introduction has led to some incredible relationships that I never would have imagined existing. At first they helped me with my UC by sharing their experiences, but a few of these relationships evolved to something far past a person to chat with when I’m feeling ill. A few of my dearest friends and supporters were found here and I even met my best friend on this app.

It sounds so silly that I can feel so much love to people I met online (a few in person, and hopefully more in the future). But, it isn’t. We share much more than diagnoses, we share understanding, jokes, compassion, and love.

Today was such a difficult day for me. The past two months have emotionally collapsed on me today and my dear friends reminded me how to smile and stay strong. I miss going out and sharing dances, drinks, and food with my friends. I miss shopping with someone who advises what I should buy because she intends on borrowing it later. But I’m not short on love; I’m not short on people who will hold my hand when I’m feeling most alone and, for them, I’m so grateful.

Spread the Purple

For a long time I was really quiet about my illness. I considered starting a blog to spread awareness because I didn’t want to be identified with IBD. As the years have gone by, my view on this has slowly shifted, as I’m sure most of my Facebook friends have noticed. But, today I’ve decided that this isn’t something I should hide and be ashamed of. It isn’t something that should be politely sprinkled into occasional conversations. It exists and people should know.

The ALS challenge was a large part in my decision to take advantage of my (limited) online social presence to spread awareness. I was really inspired to see how quickly the movement spread and I realized that it took many brave souls to put this in motion. There is a reason that people fight for awareness. Without awareness there is no progress and the IBD world demands progress.

It’s time that this life-altering disease become a disease known by name. No longer should nurses and un-specialized doctors confuse it with IBS. I refuse to have to educate the educated when I go to the emergency room. And I refuse to hide it from those who know me.

So, here it is. I’ve attempted to start a blog 3 times. This time will stick and all of my FB friends will know what IBD is.

Let’s color this place purple.