Prometheus IBD diagnostic

Since my diagnosis over thirteen years ago, my illness has transitioned into a million different labels by specialists and surgeons.  For the most part, doctors assign patients who suffer from Inflammatory Bowel Disease (IBD) as having either Crohn's Disease or Ulcerative Colitis.  It is a necessary simplification of a complex disease.  If you have Crohn's your whole digestive system, from mouth to rectum, is affected.  If you have Ulcerative Colitis, then yay, you're one of the lucky ones!  You only have a disease of your colon and rectum!

In the beginning, my illness presented itself as Ulcerative Colitis and for a while that's what I told people I had.  Unlike its cousin Crohn's, Ulcerative Colitis flare ups appear as continuous inflammation rather than patchy.  From what I can remember mine was always very active in my sigmoid colon.  Bright, red bleeding was one of the first symptoms I had before I even felt sick.  I played a three month field hockey season bleeding every time I shit, but I felt fine, and told myself as soon as the season was over I would address what I already knew was probably IBD. 

It was after my first surgery that a biopsy told me I had Crohn's Colitis.  What this meant was that yes, my small bowel was very healthy, but my large bowel mimicked the symptoms of Crohn's disease.  The inflammation in my colon penetrated to the deepest layers of my intestinal wall and then I soon learned another term to add to my vocabulary: Fistulizing Crohn's Disease.  I cannot go into detail because there is no possible word or phrasing of words to explain them.  Fistulas fucking suck.  Period.

So at my present state, when people ask, I tell them I have Crohn's disease.  If my course of events followed a dictionary definition of Ulcerative Colitis, I would probably still tell most people I have Crohn's and leave it up to them to ask more questions.  People don't know the words "Ulcerative Colitis", they seldom know "Crohn's Disease", but any idiot knows the word "disease". 

There's a lot of reasons for bringing this up.

I've often echoed this sentiment on here before, but you never have any clue what someone else is going through in their life.  I recently reconnected with a friend from high school who was just diagnosed with some serious medical problems.  Nothing life threatening but autoimmune diseases, like mine.  She told me about the trials of trying new medicines only to wait for months before doctors officially deemed their newest attempt as a failure.  She told me how hard it is at work because she feels like people view her as lazy when she's late or has to leave early.  She told me about all of the friends she has lost or cut out of her life.  When you have a chronic illness, you simply have zero time for bullshit, and sometimes that means you keep a tight circle.  Talking to her was like talking to myself at 20.  She participates in message boards, goes to support groups, and reads every possible thing she can about her illnesses.

Another point that prompted this post was that you can see how complicated, how complex, how indescribable, how undefined IBD or any illness can be.  I cannot tell you how many times within the first week or month of a job I've told someone I have Crohn's disease.  Not because I thought they should know, but because they brought up some horrid generalization or blatant misinformation that kept me from being able to keep my mouth shut.  I like to explain it like this; The digestive system makes up the majority of your abdomen.  Intestines are something like 20 feet long (I'm guesstimating) and someone who is symptomatic at foot three of intestine is going to feel a lot different from someone (like me) whose disease was most vicious in my rectum.  Everyone's disease is different, their treatment is different, and what works for one person doesn't always work for another, even in the chance that they do have similar clinical symptoms.

With that being said, right now three vials of blood are on a plane to San Diego where some person in a lab coat is going to do whatever it is they do to tell me once and for all if I have Crohn's disease or Ulcerative Colitis.  I don't know how I am going to feel when I find out because I am healthy presently.  It's important to know only for the fact that if it's determined I have Ulcerative Colitis, then I can move forward with the possibility of, at some point in the near distant future, having continent ileostomy surgery.

I could write so much more, but I'll leave it at that.

Some Boring Updates...

The last month or so has been very low key and quiet.  Work is only now starting to pick up with the anticipation of spring.  I work in construction so the ebb and flow of work follows the change in seasons.  There is a new energy in the air with the first taste of spring.  People are happier and it feels good to go home and eat dinner while it's still light out.  Before you know it, we will all be complaining about the heat again.

About a month ago I contracted a mystery illness that landed me in the hospital for several days.  Although I should have gone way before I actually submitted myself to the fact that I was fucking sick.  I'm so familiar with the hospital routine, with waiting in ERs for hours, with feeling like all you want to do is lay down but instead you have to talk to what seems like a million people before anything finally feels better again.  I resisted and resisted throughout my work week and by day five the boyfriend peeled me off the bed with puke bucket in hand and drove me to the ER.

Doctors never really gave me a definitive diagnosis.  It wasn't Crohn's but there were some Crohn's-like symptoms.  Essentially nothing stayed in my body for more than ten minutes.  So after days of that, I was in bad shape.  What made me feel like I could push through it was that I had no fever and no abdominal pain.  NONE.  Tests at the hospital confirmed that I had neither a virus or bacterial infection, however, those same tests were also showing that I was extremely sick because my white counts were elevated as though I did have an infection.  After one day in the hospital on fluids and antibiotics, I was already itching to get out of there but they kept me a couple of days until all of my levels stabilized.

The worst part of the whole experience was the fact that nurses, doctors, and IV techs had an extremely difficult time administering IV fluids and extracting blood.  Apparently I have a lot of scar tissue in the bend of my arms and other areas where I was frequently prodded in my symptomatic days.  I was going through three or four IVs every night.  They were trying to avoid putting a port in my neck or leg but if they had known how much trouble it would be to administer medicine to me they probably would have done it right away.  Anyway, I left the hospital with a lot of bruises but I felt like a million bucks.  The best part? Knowing that I have amazing health insurance and I don't have to stress about hospital bills and ER copays.

In Crohnsy news (that's what the boyfriend calls it) I am going to have an IBD diagnostic blood test done as soon as I get the clearance from my insurance.  Doctors in the past never really felt like it was necessary because symptoms are ultimately how they base their treatment decisions.  My diagnosis was never really solid and it was always uncertain which type of IBD I had.  However, I am seriously considering some options in the future to determine if I am a candidate for continent ileostomy surgery, which hopefully this test will support.  More to come on that.

Still Alive

Okay.  So I know I haven't updated in a very long time.  There were a couple of occasions where I felt like I could have said something but the past several months were marked with such unpredictability I couldn't say precisely where my life was headed.  Then I realized that I will never know for sure and that's exactly what my life is allowed to be at this moment.

When I say that a lot has happened in the last several months, it's an understatement.  I left a job I was extremely secure at and found a new job in downtown Philly.  I moved out on my own to an apartment not far from my work and began a new chapter in my life.  A new volume, perhaps.

It was a more difficult adjustment than I imagined to live completely on my own. I am lucky enough to be financially secure, but I wasn't prepared emotionally for what that type of drastic change would bring.  I felt like a million things happened at once and it was overwhelming, but I got through it. I am still getting through it.  I am working full-time, living on my own, paying my own bills, going to school full time, and still dealing with chronic illness. The truth is, no matter how healthy I am, I will always deal with Crohn's.  That will never change.

I should mention the small problems I've had with my ostomy.  I've been having a lotttttt of issues with my stoma and saw a surgeon at the University of Penn last month.  He recommended I make some changes, which I did, with little positive result.  I've basically been complaining about my stoma since I first had surgery in 2009 and none of my doctors have ever listened to me.  I was actually shocked that the surgeon at Penn looked at it and agreed, basically telling me, "They set you up for failure with this".  I could go into detail about what a stoma should look like and how it functions, but it's not important.  Many surgeons are reluctant to make such a minor operation to correct the mistake of another doctor, so it was impressive that he listened and sympathized with me. In his words, I have to live with this the rest of my life so I might as well have a stoma that functions exactly the way it should.  The next step will be to schedule a minor outpatient surgery in December or January when I am on break from school.  It's not a big deal at all and it won't require a huge recovery time like past surgeries.  

Otherwise, the last time I posted I talked about how I came off my anti-depressant, but recently I went back on another form.  It was hard to admit to myself that I still needed medicine, but I've been better since I started back on it and while I know it is not a permanent situation, it's what I need for right now.  I'm okay with that.  I went through so much to get my body healthy, it would be shameful to let my pride stand in the way of keeping my mind just as secure.  I know a lot of it has to do with the ostomy issues and feeling like I lost control again in the same way I was when I was really sick.  So I'm looking forward to getting all of this straightened out.

I think I also realized how active I need to keep my mind.  I took the summer off from school and felt like I made a lot of bad decisions in that time because I had too much idleness that I couldn't bear.  I need the structure of school, the discipline, the mental stimulation, and the tremendous challenges each of my courses brings.  While it's stressful, it's also what makes me tick.  I love learning.  I love being challenged.  And I love that every time I leave class I feel like I am a better person because of the knowledge I've gained.  Through school I've also become more confident in myself.  Throughout every job I've ever had, other people always believed in me more than I believed in myself.  Now that I am in a truly competitive academic environment, I understand how much this is true.  I am learning to accept the praise that accompanies my hard work.

Perhaps the most difficult lesson of the past year has been understanding that healthiness doesn't equate to happiness.  I always thought once that part of my life was restored then everything else would fall into place.  But life is a lot more work than that. And I'm willing to work my ass off for my piece of happiness.

Till next time...

Updates on my exciting life, three weeks later.

I didn't think it was possible for there to be more reflection on my life post-surgery than there was before. Before, I was trying to justify this surgery to myself, family, and friends. I talked about all the ways my life would be improved. I read blogs, message boards, and then re-read them all. I thought about my life these past two years. I knew my life would become better. But at the time I was so terribly wrapped up in my illness that I couldn't actually allow myself to mentally go there.

And now, I am beginning to imagine how life is going to be. I am finishing my graduate school applications. I am not worried about the future. I am just excited. I am very close with my family and I've had a lot of discussions with them about how it feels to finally have this disease removed from my body after eight years. And I just tell them it feels great. The most descriptive I can get is that I am completely free of stress. Before this, my life was a ball of anxiety. Now I go to bed every night knowing I will wake up in clean, dry sheets. I can spend a whole day in the same sweatpants. The other day I went ten hours without going to the bathroom. The simple things in life are pretty damn amazing.

On Thursday, I went back to Maryland for my post-op. The night before my drain had broken free from my stitches and came out on its own so I didn't need that removed. I had my stitches removed from my bum (yes, they stitch your butt closed) and everything is progressing wonderfully. Before my appointment one of the nurses, whom I have known since 2004 came in the room to see me and ask how everything was. She was telling me about another woman my age who just had surgery and it was "the best decision she ever made". I never imagined that I could be one of those people who saw an ostomy in the same way...

Life is so wonderful I find myself thinking and crying tiny tears of joy. Yes. ME. Ellen. Crying. I think I also cry because I can finally give myself a pat on the back for being so strong. I guess I'm pretty brave, huh?

Two Weeks Later...

Well it's been two weeks since surgery and things are going okay. I'm sleeping A LOT. It's nice to have uninterrupted sleep the past few days now that I'm not on pain meds all the time. My sleep schedule is still wacky because I don't really have any responsibilities but it's nice to just lay in bed and not have your bowels telling you to wake up.

I've been having a few issues with my ostomy itself but that's probably from losing a little bit of weight. Anytime there's a fluctuation with your size, it affects your stoma a lot. Before surgery I had finally gotten to a point where I was never having leaks or needing to change my appliance a lot because I just knew my stoma. I know it'll just take some more time before things settle down again and I have it under control. But I'd like to stress these minor hiccups are preferable to anything Crohn's-related.

Otherwise my stoma is the same and my surgeon didn't even have to change anything about it. I kind of wish she did, though. From my understanding she folded the part of my intestine behind my stoma so that instead of being a "loop ileostomy" mine is now an "end ileostomy". You know how before surgery I was having problems with my output bypassing my stoma? Well, now there's no pipes left for it to travel down so everything is forced out of my stoma for lack of an alternative route.

My wounds are healing nicely and I don't really have any pain anymore. The most troublesome and irritating thing right now is dealing with the drain I still have. There's stitches around the part where the drain meets my skin, so naturally it is a little bit uncomfortable when I sit on it. Also, just the whole part of needing to carry this damn drain around every where I go is still very annoying. Every once in a while I let it fall to the ground and it pulls on the stitches and hurts. Luckily the drainage has slowed down significantly so I should definitely have it removed when I see the surgeon on Thursday. Hopefully I'll be cleared to drive then, too!

All in all everything has been how I expected. There's been some rough moments I will admit. Honestly I think a lot of it has to do with pain meds. There were a few nights where I was just emotional because everyone in the house would be asleep and I was just...uncomfortable. Nothing a little time with my mom didn't help.

I've also been thinking a lot about the emotional adjustment of knowing you're going to live with an ostomy forever. When I was in the hospital my GI came to see me and wanted someone to come talk to me. A social worker or therapist or something...And I just wanted to explain how not everyone is a wreck after this. I've been emotionally preparing for a year and for me, the tears and "why me" are way behind. I don't know. It's a whole other topic for another time.

In short, I'm doing great. I have my days. I'm tired a lot. But you know what? Every day is getting easier. I'm excited.

Home and Resting

I've been home since Sunday and it feels great. There's nothing like a week in the hospital to make you appreciate how great sleeping in your own bed is and marching to the beat of your own drum. No more 6 am wake ups by doctors and phlebotomists' searching for a good vein to draw blood while I'm half asleep. Now it's back to fighting with my cat every morning while he insists on marching across my stomach until he finds the right spot to lay.

The physical adjustment hasn't been so hard. It's pretty much what I expected from my other surgeries when I had a big incision. My surgeon used only half of my previous abdominal scar to open me up so I guess my pain should actually be less. I also have two new tiny spots where she put a laproscopic-like camera in there. Those don't hurt much at all. I do have a lot of pain on my right side where my stoma is. I think that area of my intestines is inflamed a bit from the surgery even though my surgeon actually didn't need to adjust the stoma itself at all. How she did this is still confusing to me. The whole damn thing is confusing to be honest.

A lot of people, after surgeries or doctors appointments, seem to say "my doctor said it's the worst case he'd ever seen" or something along those lines. So I won't even go there about my surgeons impressions of my insides once she got in there. Of course she did say my colon was very much inflamed and I had multiple fistulas in my rectum, which we already knew. A couple of interesting things were that she didn't even think I had much of my colon left. Even though I only had half of it removed back in '04, she said sometimes your colon can actually shrink from inflammation and scar tissue. Weird, huh? Also, there was an area of my small bowel that adhered to my large. She didn't think it was a fistula (which was a concern of my dr's that was ruled out through multiple imaging tests) but said that it couldn't be ruled out 100%.

Otherwise, my appetite has improved a lot since I've been home, too. I still get full easily but I'm eating and enjoying it. I really don't have any dietary restrictions but I am still hesitant about eating vegetables and other things that aggravated me before surgery. Honestly the most annoying thing right now is that I have a drain coming from my butt that I'll have until next week. My surgeon decided, because of my terrible rectal inflammation, that the safe thing to do would be to leave the drain in for a few weeks to make sure nothing became infected. So I've got this long tube that drains into a grenade-looking plastic container and I've got to drag it around with me everywhere I go. If I don't hold it when I'm walking then it pulls on the stitches in my bottom and hurts just a bit. So I'm not completely free yet but I am getting there.

That's all my news for now. I've been spending the days with my mom and nephew, whom I can't pick up for 4 weeks :( I am just trying to relax as much as possible so I can be back to my old activities in no time. Life has been pretty boring these past five days, and that's just how I like it.

This is Hard

I don't think anything could have prepared me for the pain. I actually think I was better Monday night and Tuesday than the last two days. It's just been very difficult to be comfortable and stay positive. My mom left tonight and my dad is coming down tomorrow. I've had several close friends visit me, which was an incredible comfort, but I really wish my sister and brother could be here.

Considering all my body has been through since Monday, this is to be expected. But you can never be prepared, even though I've had some similar experiences. I just wish I could be home laying in bed watching my nephew play. Having iChat on my computer has definitely made it easier, but there's just something about being in a city away from your home and so far from your family that makes it tough.

It is getting better every day. Just going a lot slower than I anticipated.

I'm sure I'll have great things to report soon.

Just a little bit longer...

I was a little bitter in my last snow post. Well, a lot bitter. I spent the whole holiday being stressed about surgery and it was for nothing. I wasn't exactly stressed about having my colon and rectum removed, but more-so wondering how my brother was going to manage being my primary caretaker for a week. Then when they started forecasting a snow storm, I became obsessed with wondering if the weathermen would be wrong or not. In the end, they turned out to be right and I was stuck in Philly. If we had left early Sunday morning before the storm hit, we probably would have made it to Baltimore in a timely manner and been able to walk to the hospital in the morning. However, the city of Baltimore had issued a Snow Emergency so I assumed they were gonna get pounded as well. It turned out to be a crazy storm in that the snow totals varied greatly by areas that were only separated by miles. In parts of Philly the totals were over a foot, but in the Northeast, where I live, we got about 8 inches.

Luckily there was a cancellation for a surgery on Monday, the 3rd, so I was able to be fit in then. I am very happy about this because I would go crazy waiting any longer. I've been ready for this for months and the last two weeks I've been very sick. The good part of all of this is that my mom will be with me for the first few days after surgery and then my brother or dad will come towards the end. I can't even tell you how much of a relief it is to have my mom with me (not that my brother is incompetent) because there are just some things you need your mom for. And this is definitely one of them.

Okay, just wanted to fill everyone in on what's happening. I am sure I'll post something more over the weekend. Happy New Year!

Nothing says "Merry Christmas" quite like a proctocolectomy

It looks like my surgery will be next Monday, the 27th. The timing isn't exactly ideal, as instead of drinking champagne on New Years Eve, I'll be pressing my PCA button to administer more morphine. Hmm...Well maybe that's not so bad!

The timing really couldn't be better as far as my symptoms, though, because I am feeling like garbage. I am definitely aware that Remicade must have been working more than I thought because over the past two weeks it's been a rapid decline. I am having a lot of issues related to my fistulas and abscesses. This past weekend was particularly rough and it has been frustrating not to be able to participate in all of the Christmas-related hoopla that usually comes around this time.

In addition, I won't have as many visitors as I would like. Since my close family is in Philly and my surgery is in Baltimore, my brother will be with me for most of the time and my mom and dad will probably come towards the end of the week to bring me home. And because my sister has a three-month old and I've been her babysitter for the past month, she won't be able to come down. This doesn't really bother me too much though and I have some friends in the Baltimore area who will hopefully be able to pop in.

In the meantime I am trying to enjoy these couple of days before Christmas as much as possible. I'm sure you'll hear from me again before Monday. Till then..

Numbers Don't Lie

Since 2008, I have spent 123 days either in the hospital or traveling to the hospital for an appointment. During these appointments I have had 26 exams. This includes colonoscopies, xrays, catscans, etc. And perhaps even more interesting is that I have been prescribed 22 different types of medications in an effort to treat my disease. This only counts the past two years.

I got these numbers recently through a partnership my insurance company has with webmd. They are trying to influence members to keep track of their health through this online database. I guess it's a way of taking personal responsibility of your health, partially through your own contributions to the database but also the information given to your insurance company by your doctors.

I don't necessarily think it is a good idea because all it does it provide basic information. For instance, it will tell me the date I was treated, which doctor, and which test was done. But there's no option to actually review the details of the test results. Perhaps this is something they are working on or perhaps the intent is to spark a patients interest in maintaining their own personal health record by providing the database as an organizational tool. Either way, it was kind of shocking to read.

To think that I spent 123 days dealing with the bull that comes along with hospital visits and invested time and money to get to these appointments is staggering. To think I endured 26 diagnostic tests to a manage a disease that couldn't be managed is frustrating. To think that not one of those 22 medicines could provide long-term relief is unbelievable.

In the future I look forward to being medicine-free and disease-free.

Free. I like the sound of it.

Surgery, Christmas, and the New Year

I've been reluctant to post with my surgery date because everything is still very much up in the air.

I am scheduled for December 27th but it has been difficult to arrange it so that my family can be in Baltimore with me. The holidays are certainly a crazy time without the added stress of worrying about squeezing in a proctocolectomy.

Also, I've had a minor issue with my health insurance which is keeping the approval of the surgery from going through.

Hopefully between now and Friday things will be finalized and I can finally relax and just enjoy this time with friends and family. Until then...

Hurry Up and Wait

Often throughout my time being sick, I have always been counting down the days until an important event. Sometimes it's been a doctors appointment where I knew big decisions were going to be made. My sophomore year of college it was a countdown until the end of the semester when I would have my colostomy reversed. These past couple of years it's been wishing for time to go faster so I could reach the time period alloted for whatever new therapy to begin "working". During these waiting periods, I've never been able to enjoy anything else that was happening in the present.

I figure in the past nine years with Crohns, I have wanted time to go faster more often than not. The big events of your life when you're dealing with illness are not like most where there's certainty in the reward waiting for you at the end. With chronic illness the waiting games are torture and you never know if the result will be worth the agony and exhaustion it takes just to endure the exams, medicines, and appointments. And even when there is good news waiting on the other side, it just means that you've bought some extra time. Nothing is ever certain.

Part of my decision-making lately has been thinking about all of the time in the past nine years I have lost because of Crohns. I wouldn't be able to live with myself, if, in ten years, I looked back on my twenties as a decade that should have been the time of my life. The time I've lost recently has been especially rapid. Everyone around me is moving and I'm just stuck in a rut where I'm standing still and I have nothing to show for it but the physical and mental effects of fighting a battle that can't be won. Part of me feels the defeat of this assault, but another feels victorious that the duration of this more recent struggle has allowed me to arrive at a place of acceptance.

I can see the light!

Power Moves

After receiving the results of my MRI and colonoscopy, I realized my disease has progressed to the point where not even the most powerful therapies nor my diverting ileostomy have been beneficial. The next step is to have a proctocolectomy done.

I don’t know exactly what it is I am giving up with this decision and that is the frightening part. I’ve had my experience with the whole ostomy part but there is no way to predict how exactly this adjustment will play out when I begin to function normally again. I anticipate it will be very hard at times. What I do know is without taking this step to have my colon and rectum removed, I wouldn’t even get the chance to face such difficulties. For me, this decision comes down to one thing; That I have dreamed and planned much bigger things for my life than what these last two years has been.

Right now since being off steroids completely I can see a huge difference in my symptoms. I am still feeling much better than pre-Remicade, but I struggle and most of my activities are planned around my disease. I have adjusted incredibly to living this extremely challenging life where I have little control. This is scary because sometimes it has me believing that things really aren’t that bad. I think, “Well, at least I’m out of the house today” and that perspective is dangerously flawed. Yes, I’m eating, I’m not losing weight, I look healthy. But I have zero freedom.

There’s a lot going on right now. I won’t be receiving Remicade anymore and I am planning surgery as soon as possible, which looks like it will leave me in the hospital at the end of this year. Nothing has been finalized yet but the ball is rolling…

I try to do the best job I can to convey exactly how much this disease has impacted my life, but it is impossible to understand unless you live it. Crohns fucking sucks and after dealing with it for almost nine years, I finally feel like I am getting closer to a place where I can be in control again. An ostomy is not the end of the world for me, it's the exact opposite; it's just the beginning.

Stay tuned.

Feeling better after Remicade

During my first stint on Remicade, from 2005 to 2008, I was never one of those people that needed their next infusion. Of course I diligently kept up with my bi-monthly appointments but it was never a big deal when that time came around. Even when I started the drug, I did not see a drastic improvement like many people do. Instead, my turn-around was a gradual process that occurred over three months.

I started the drug in August after a summer where I pretty much lived in the hospital. And if I wasn't in the hospital, I was at a doctors appointment, trying to convince my doctor that I didn't need to be hospitalized. And then days after my twenty-first birthday, I started Remicade during one of my hospitalizations. After everything I had heard about people experiencing drastic improvements on it, I was optimistic. Every hour I spent out of the bathroom, without pain, or a craving for McDonalds, had me thinking, "Is this it? Is this Remicade working?" I wanted it to help me so much that I attributed every little positive moment with the magic that Remicade had to be working.

But I have learned with this illness that you can not look at your symptoms on a day by day or hour by hour basis to judge how you are feeling. Sure, the way you are able to perform your day to day activities is certainly going to determine if you are happy with your treatment, but you have to step back and take account of how you have been feeling over a long period of time. I have to remind myself of this all the time.

For instance, I feel like whenever I have doctors appointments, I happen to feel well at the time. And even though my symptoms are terribly upsetting to me sometimes, I often forget just how much they interfere with my life, because I'm so damn happy those few times when they don't. This can be a problem.

But back to my point about Remicade. I remember throwing myself into my spring semester in 2006 not having a clue about what was going to happen. At that point it had been four months since I started Remicade and I was getting better. But it is one thing to feel well when you are sitting at home and always in your comfort zone, or near it. It is another to return to school, live with strangers, and not have your support system around. And once I got my semester started, something about it felt different. I enjoyed going to class, living with five other girls, and being on campus. My health only improved and Remicade gave me three years of the most amazing time of my life.

Looking back on that situation, I can see that getting my first infusion of Remicade was a turning point in my life.

Now I am in a situation I'm confused with. When I began Remicade again this year, it was like night and day. The differences were felt immediately. This was certainly a different reaction than the reaction I experienced back in '05. I guess I am just trying to make the point that everything is unpredictable. No one can predict this disease, the drugs to treat it, or how our bodies react.

I was feeling like garbage this past month and then bam! I got Remicade on Wednesday and I've felt great since. Now I don't know why the last infusion didn't seem to help me or why this one did. But I know that taken on a whole, there has been so much inconsistency with my symptoms, even since the start of Remicade again. Even though I am so grateful for the fact that I do have good days now,I think if I were transplanted back to my college life of '06, I wouldn't be able to thrive as I did then. Remicade just isn't doing the same things for me this time.

I guess I'm just trying to get myself ready for this colonoscopy on Thursday. There will be so much to think about and a lot of decisions to be made. Taken with my symptoms and blood work over the past several months, the extent of inflammation my doc sees in my colon will likely determine if we continue on this course or come up with a new plan. Either way, it's a scary thought to abandon Remicade. I know it sounds crazy but I feel like I have an emotional attachment to it just because of the things I was able to accomplish when I was in remission.

Sympathy fasting on Wednesday??? ANYONE?????

Oh well. This guy certainly won't be fasting with Aunt Ellen. But I think his mom would agree she could use a break!

The State of Remicade

Today was another trip to Maryland for my infusion. It seems like the four weeks just flies by and before I know it, it's time to go back down again. This time I scheduled the appointment around noon because I really don't enjoy waking up so early to get down there. We left around 9 am and got there a little before 12. No matter how early I leave it never seems like its early enough because I'm always just barely making it there. I guess because I'm always going at different times I haven't quite gotten a sense of the perfect times to leave. And then coming back is always a question mark. Today we left Baltimore around 4 and barely ran into any traffic. We were home in Philly by 6. Strange.

Anyways, I haven't been feeling very well since all those obstruction episodes a couple weeks back. I haven't been able to do much, honestly. I feel like I get short of breath from walking up a flight of stairs and lightheaded with the slightest movement of my head too fast in any direction. That on top of my normal Crohn's symptoms has been a rough combination. But I am trying not to push myself too much because I have to take the GRE's on November 15 and I need to keep myself in good shape.

I briefly discussed some of my concerns with my doc via e-mail. Between my symptoms and the news I got after my MRI, it's pretty safe to say this colonoscopy is no longer being done to see if my colon is healthy enough to be reconnected. At this point my doctor wants it done to compare it to the one I had before I started Remicade again. Basically, if he does not see much improvement then we need to consider another therapy option.

Now you might be wondering, like a lot of people, why I would abandon Remicade if it made me feel better? And while it did improve my life drastically, I don't think it's enough anymore. My symptoms are still way too inconsistent for me to feel comfortable living a normal life. I think I was so happy about how I was feeling because it was some improvement, and nothing else therapy-wise had done anything to make me feel better. Also, I am now about two weeks steroid-free. And I definitely think there was something about the combination of a small dose of steroid and Remicade that clicked well. But I can't be on steroids forever, and certainly Remicade and 6-MP (Chemo drug which has been shown to extend the effectiveness of Remicade) should be able to make me feel better.

Now back to the scope and MRI. The scope next Thursday will give my surgeon a better idea about the extent of my fistulas. I read the report myself today and I have three of them, two of which are producing small pockets of infection. From my understanding it all depends on the location and size of the fistulas to see if they can be removed. Either way I am pretty sure I am going to need surgery to place the setons in, which I talked about last post.

Everything going on right now is very overwhelming. I feel like I came to a lot of conclusions about my life and I want to be able to carry out all these plans I've been thinking about the past couple of months. I am excited at the idea of possibly being in school next year, but if I do get accepted, I need to be healthy. I don't want it to be like some of my college years where I sometimes could barely even walk from class to class. I want to enjoy every minute of it this time.

I keep telling myself that if the scope next week shows things are still really bad, then I am ready mentally to have surgery, because I have exhausted a lot of my therapy options. I know surgery is the only thing that will give me consistency again. Lately when I go out with my sister somewhere or go for a walk, I think to myself....if having an ileostomy was the only thing I had to worry about each time I went out, I would be 100 times happier, because the problems associated with an ostomy are A LOT more manageable and infrequent than Crohn's problems. But it's a lot easier said than done...

Guess I'll be thinking about this a lot more come next week when I know for sure what's going on.

Can I catch a break?

Doesn't seem like it.

First of all, I started feeling like crap again on Wednesday. Definitely not to the extent of last weeks pain and vomiting but something has to be going on inside. The pain isn't as horrible as last week but it is still there and gets worse when I eat. Yesterday I was extremely nauseous, throwing up, and had a huge headache. Luckily by the end of the night I was feeling much better and keeping down some soup and lots of fluids.

Then my doctor called me with the results of my MRI. I have quite a few fistula tracts leading to pockets of fluid in my bum, which explains what happened a few months ago when I was having a lot of pain down there. So it is necessary for me to have an outpatient procedure done to place setons (spelling?) in the fistula tracts to ensure that fluid doesn't build up again. From my understanding of it, the seton is like a thread that they place through this tract, thereby ensuring that the tract can drain the pockets of fluid.

So I have a consultation with the surgeon the morning of my colonoscopy to schedule a time to do this thing. I'm not getting too discouraged, however, I can't help but be a little angry. I'd just like a break from all this crap and that doesn't seem to be happening anytime soon.