Life and Changes

I am 8 days post-op and feeling pretty well considering all my body has been through. I can't believe how much easier it is recovering from this surgery which was planned, compared to my first ostomy surgery which was performed as an emergency. The pain and adjustment was much worse the first time around. I was expecting that kind of pain this time so it's awesome to be able to get out of bed without needing someone to hold my hands and pull me up. I feel like I will be more mobile and independent in no time. I can't wait to get behind the wheel of my car. I haven't driven her since April!

It hasn't all been smiles and laughs I will admit. I want to be honest with people but I find even with close friends I don't know how to quite explain what has happened. Not all of them read this blog but I have recently been telling some of them to do so just cause there's no easy way to talk about it. My own feelings about now having a "bag" change hour to hour. I just want to feel sorry for myself sometimes, and I've learned to let myself. After all the shit I've been through I think I need to allow some self pity from time to time. This is a major change in my lifestyle that I know eventually will become second nature, but for now I am scared about what will happen in the future when it's time to resume a normal life.

I get frustrated with the ileostomy every now and then but I have to remember how I was living before. My bowels are still healing from surgery so I have to empty it about 5 times a day. This might seem like a lot but it's better than running to the bathroom 20+ times a day. I haven't exactly been eating the most bland foods which would probably slow down my output. I'll admit I have been indulging in foods that often caused me misery before.

The first night at home in my bed after my hospital stay, I slept 12 hours. It was absolutely magical! You have no idea how great it felt to sleep like that. I think my brain woke me up once to make sure my bag wasn't full. It wasn't, and I immediately fell back asleep. Since then I've been getting good sleep when I can actually FALL asleep. That's always a problem for me. These past 8 months really messed with my body and sleep schedule so now it's all very unpredictable.

I'm still having some pain in my stomach but it is likely surgery pain rather than Crohn's pain. I am a little bit concerned because I feel nauseous a lot and actually threw up the other morning. I'm hoping it was just a result of me eating too much and not something involving the hernia or Crohn's. I can only eat extremely small amounts before I feel full and sometimes I'm eating too fast for my brain to let me know. I've been making a conscious effort to eat slower and not let my eyes be too big for my stomach. Do you know how much it sucks when you can only take 2 bites of a cheesesteak! It's a whole mind adjustment to tell yourself that in 10 minutes you are going to feel so damn sick if you keep eating. Unfortunately because of this I haven't been gaining any weight...but I'm not losing any, either. I'm about 102 pounds right now which is absolutely ridiculous for me. I'd like to get to at least 120 to feel good but obviously I want to gain good weight and rebuild some lost muscle.

This entry is really all over the place because I feel like I have so much I want to say about all of this. There is so much going on but I am certain I am headed in the right direction. I have been helped tremendously with this by many friends, old and new. A lot of you read my blog so I want to thank you all for the cards, flowers, phone calls, and prayers. I've gotten great support, too, from various Crohn's forums and blogs. It helps to hear stories of other people overcoming this illness and living normally with an ileostomy because I know I can, too. I've been overwhelmed with love and well wishes from all over.

Before I shut up for now, I just want to share something that my dad said to me when he came to see me the day after my surgery because it pretty much sums up the feeling of my family right now. He told me how he had gotten the best sleep the night before because he knew I was finally going to be okay after seeing me post-op. He couldn't remember the last time he had slept so soundly. After so many months of worry and stress, I understood exactly what he meant. Not only have I been sick, but my family has had to endure sleepless nights and a huge amount of stress. I'm very grateful we are all sleeping a little bit better this week.

The good and the bad

I am home from *the hospital for about four hours now and so happy! I took a nap for an hour but I am in desperate need of more sleep. I'm trying to wait until tonight so I can get back to a somewhat normal schedule. Despite the hospital being actually really quiet at night time I still didn't get much sleep.

As far as the surgery everything went fantastic. My appointment was for 10:30 but after waiting for them to hook me up to IV fluids so I could provide a "sample" for my pregnancy test (negative, thank goodness!) I didn't go back to be prepped until 1 p.m. I had to keep reminding myself during those hours about how close I was to surgery and how much shit I had already been through because I was on the verge of complete breakdown. It was a good thing my mom and dad both came with me because it would have been a lot for just one of them to deal with alone. Emotionally, the toll of the past 8 months had caught up to me and I just couldn't wait for surgery much longer. I was dehdrated, tired, and just plain SPENT. I was ready to go.

Surgery started around 2 and lasted about an hour and a half. They discovered I had an internal hernia which my small bowel had essentially poked through, causing all of the nausea and vomitting I began experiencing lately. I have no idea how long the hernia has been there and I'm now suspecting it might have been mistaken for the bowel obstructions I've had in the past. I'll investiage that later when I follow up with my surgeon.

They were unable to create a colostomy, which I discussed in my last entry. They created an ileostomy because most of my remaining large bowel is too diseasead. It was important to me that they not actually remove this portion of my bowel because I have not lost all hope of one day having a miracle that will allow me to be hooked back up again.

So you are probably wondering how I am feeling, if I'm eating, if this surgery "cured" me? Well I must say that at this point, I am extremely happy even though I have a new "friend" hanging at my side. We have appropriately named my stoma (the medical name for the part that comes through my belly) Stevie. Steve the stoma. Stoma Steve. Take your pick. Anyway, if Stevie helps give me my life back then I can deal with it happily even though it is not ideal. At this point I am eating well (although in very small amouts) and no longer experiencing the debilitating pain that plagued me before. Surprisingly, too, my recovery from surgery thus far has been the easiest of all 4 of my surgeries!

I just wanted to give a tiny update of how I am doing at this point. Somehow I always make my small updates way too wordy. In a few days I'll have more to say about adjusting to the ileostomy and my continued progress.

Oh, and for those of you wondering what the bad news is, as suggested in the title of this post? I'm missing Penn Presby's Chicken Tender Tuesdays for lunch tomorrow!

Can't wait...

Ugh.

I felt okay today and yesterday thankfully. I've been trying to take advantage by eating more and getting around the house. With all the weight I've lost my knees and ankles are absolutely throbbing from merely increasing my activity to a few trips up and down the stairs daily. I find if I plop myself on the floor to be closer to my cats it's almost impossible to stand back up unassisted. And you can forget about going downstairs in the middle of the night to get a drink or snack. I just can't carry everything and climb the stairs without using the railing to guide me. The other day I made the mistake of trying to carry my 10 lb cat up the stairs to my room. I made it about 2 steps before I gave up.

I mentioned before that I've been experiencing nausea and vomiting. This symptom isn't entirely new as I implied. If I think about it, it's actually been going on for about 2 months. I've had times where I wake up in the middle of the night and have to throw up immediately. It's strange; sometimes I'll have nausea for hours before and other times it just hits me and in seconds I'm reaching for my conveniently placed Penn State pail that has been designated my throw up bucket (thanks Liam). I wouldn't dare throw up in anything Maryland related.

I'm trying not to think about surgery too much and especially preparing for it the night before. The prep is always a bitch when you are sick. You'd think it would be easier considering your sickness is already one step ahead of what the multiple laxatives are going to do anyway. But being even more dehydrated and just the exhaustion of not sleeping the night before on top of the actual process of running in and out of the bathroom sucks. Sorry if this is TMI.

So I weighed myself today because I've been eating more so I thought I might have gained a couple of pounds. How foolish of me. I'm at an all-time low of 103 pounds. When I was originally diagnosed I was 105 at my worst and I remember standing on the scale bawling my eyes out and my dad tried cheering me up by telling me how much fun it would be come time to put several pounds back on, guilt-free. At the time it didn't exactly cheer me up, but boy he was right!

So people; be ready come September to indulge with me in lots of adult carbonated beverages, pasta, hoagies, starbucks lattes, and other fattening Philadelphia treats. Maybe we'll throw a couple salads in there from time to time but I expect you all to gain a few supportive sympathy pounds with me!

Getting closer...

My 25th birthday came and went yesterday (Friday) with relative ease compared to the two days before. Let me just tell you that Wednesday and Thursday were absolutely MISERABLE. I barely slept because I was in and out of the bathroom all day and night. I was in pain and also throwing up quite a bit, which is a symptom I never really had before. Once I'm sleep deprived it only makes things worse because I get upset easily and I'm irritable. So it was a nice change of pace to get a decent sleep the night before my birthday and be able to lay in bed all day with minimal pain. Being as sick as I am, that's all I could really ask for. This isn't the first birthday I've spent in bed so I wasn't really upset. My sister and I have already made plans to celebrate my birthday after all this madness is over and I can really enjoy myself.

I've received lots of well wishes for my surgery this past week in addition to the usual birthday stuff. I guess what's good about being sick is everyone tends to make a bigger deal out of your birthday because they feel bad that you are stuck inside on a day when you should be out. My brother, Liam, got me a Cliff Lee t-shirt jersey which I'm quite excited about. Liam has promised me I'll get to wear it at a game in September. Hopefully he is right. I haven't been to a game all summer!

On another note, I'm getting excited and nervous for surgery next week. On the one hand I know it is going to improve my quality of life but I am not looking forward to the pain. It's quite a recovery process when you have a large incision in your belly. You don't realize how much you use your stomach to move, cough, laugh, etc...And when you do, OUCH! Not to mention getting used to having an ostomy.

I'm really lucky to be surrounded by amazing people. As I write this, my sister Nora and her husband Ryan will be waking up in a half hour to drive to Ocean City for a Crohn's and Colitis 5K. Even more amazing is that when they mentioned it on the 4th of July, a lot of their friends jumped to join them. They are all driving 2 hours just to do this walk in support of me and for that I am very grateful. So Lisa, Andi, Claire...if you happen to read this you guys are awesome!

Well I'm sure I'll update before surgery and hopefully I can steal some wireless internet somewhere while I'm in there. Can you believe they don't have internet or Comcast Sports Net!?!?!?

My day has come...

Warning: This blog might gross some of you out.  Or confuse you.  Either way, proceed with caution :)

I had my visit with my surgeon yesterday (Wednesday) to discuss and schedule the procedure. I had one of the most unpleasant doctors office visits of my life. My appointment was at 10:45 in the same office I went to when I had to get my drains taken out after my last surgery.  I thought maybe the ridiculous waiting from my last visit might have just been a fluke, but no, it was just as bad this time around, if not worse.

As soon as I arrived in the waiting room I knew it was trouble.  It was packed and I was extremely uncomfortable sitting in those lovely wooden chairs with people staring at me because I was curled over in my chair, obviously hurting. By the time 11:15 rolled around I had rearranged the chairs so I could lay my head on my moms lap while she eased some of my nausea and tried to distract me from the pain.  I didn't get called in the room until noon after the waiting area had cleared out of every single person.  I was literally the only one left.

Call me crazy but I think the one instance in which efficiency and courtesy should be the utmost priority is in the healthcare industry.  People are sick and I wish I could impart an ounce of my pain on them just so they understand.  It is a business and as a business I can't quite understand how they don't have appointments and timing down.  When I go to visit my GI doctor, I am seen right away and there is no bullshit.  As a very sick patient, I appreciate this more than you could imagine.  Anyway, sorry if most of this is just me bitching.

So I get to the next room--the actual examination room where at least I can lay down with a sheet.  I'm there for 45 minutes before I see the surgeon.  Once he comes in it's the usual run down of questions referring to my previous surgery in Maryland and questions about how much of my bowel was removed as well as what kind of ostomy I had.  Basically, the surgeon did not have my records nor did they indicate that I should bring them.  After calling my GI, they had to contact the University of Maryland Medical Center for my surgery report in order to determine how they would approach surgery this time around.  The report was crucial to understanding if I would be given an Illeostomy or Colostomy (more on that later).

It isn't until 2:30...yes, I laid on the table in that small ass room from noon till 2:30...that they finally get a pathology report faxed concerning my surgery (conveniently the 31 page surgery report arrives as I'm on my way out) .  Of course, the pathology report isn't sufficient enough but the surgeon gives up and decides to start the consultation anyway.  He proceeds to tell me, "Well, we won't really know anything until we open you up anyway."  Umm seriously? All that time laying there...waiting...was basically for nothing.  The consent for surgery I signed basically says anything can happen and I might not get a colostomy like I prefer.  Also, they cannot operate laproscopically since I've already had surgery and there is likely to be a lot of scar tissue in the way. BUMMER...because this means a longer recovery time and more pain.  And just when my scars were starting to switch from gross and discusting to barely visible and "cool"...but oh well, it's not like I was ever the type to rock my bikini on the beach.

So the biggest issue is an Illeostomy vs. Colostomy.  A colostomy is what I had previously.  In this instance the diversion is created so that your waste still travels through your large bowel. Without grossing some of you out, this means that your output will be closest to "normal" that you can get with half your intestine missing. But this plan rests on the healthiness of my remaining colon. The last thing you would want is to still have pain after surgery. With an Illeostomy, the diversion is created right after your small bowel so your waste never goes through your large bowel.  Thus you miss out on all the digestion that occurs normally in your large bowel.  As I stated before, I had to consent to either/or because they won't really know until they see inside.

The important factor in all of this is that afterwards my rectum will be bypassed, where most of my disease is active and painful.  If all goes to plan, I should be feeling better and able to finally function in my life. Thankfully the past couple of days I've had pain meds from my family doc which have made things bearable...I just don't understand why my GI can't offer me this relief.

So surgery day will be August 13th.  I'm guessing I'll be in the hospital around a week.  I'm trying not to think about it too much or second guess my decision.  I know it's the right one.  I just have to keep reminding myself that.

Crohn's Sucks.

Miraculously my doctor did not want to hospitalize me on Tuesday.  I don't know how or why but I was so certain I was going to be admitted that I was actually looking forward to the jolt of energy I might get from fluids and blood.  

Basically the appointment revolved around discussing my surgery and being violated like usual anytime I step in a hospital.  It wasn't very pleasant sitting in that small room with two doctors asking me the routine 100 questions about the state of my disease.  I was in a lot of pain towards the end and I can't quite understand how they could look at me and send me home with no pain meds. Right now I'm on antibiotics and some other crap that doesn't do anything. If you can understand, it's quite frustrating.

On the way out the door, my doctor turned to me and said, "Well, it only took you 6 months but you finally made the right decision."  I wanted to punch him in the face.  Seriously buddy, it's not an easy decision to opt for a colostomy when you are a 20-something female.  It's kind of a big deal.  He then proceeded to tell me about the woman before my appointment who has been living with hers for 10 years happily and if she can do it, so can I.  But that's not the issue. I know I can do it and I know it will make me healthier. It's the idea of not knowing how long I'll need it, not being able to rock those skin tight shirts you all know I love to wear, and not to mention the worry of being out somewhere and having a technical difficulty with the colostomy. Those aren't fun.

So the appointment with the actual surgeon isn't until July 29th and I want to cry.  My doctor gave me the impression they would be able to operate on me by next week.  I really don't know how I'm going to hold out for 2 weeks and then probably another week before the surgery. Living for 3 more weeks the way I have been living recently will be torture and I really don't know if I'll be able to make it.  I feel like I've gotten worse the past couple weeks.  I'm not on the Methotrexate anymore so who knows, maybe it was doing something, even if it was minimal.

For now, time to order some colostomy supplies and get myself ready for what's in store.  If I had my way I'd drink that nasty shit to clean out my system right now and have the surgery tomorrow.  I just want my life back.

When life hands you lemons...

For someone who is extremely indecisive about the simplest things in life, I've had to make some pretty serious decisions in the past couple of months.  I found myself making one of the biggest decisions I have ever had to make this past week.  I'm not sure if it was so much of me finally deciding something as much as it was me coming to the realization that the situation I am in right now is dire need of a surefire solution.  No more experimentation with drugs that take weeks to work only to find out they aren't going to work for me.

After months of believing one of these crazy drugs was going to work or that some miracle was going to magically make me feel better, I realized I have to go down the path I have avoided these past six months--surgery.  Although a difficult and life changing decision, I have decided the only way to get my life back is to have surgery which will give me a colostomy.  All this time the thought of having a colostomy again with no idea of when it could or would be reversed made me think my life would be over.  But really, being sick in this bed, losing weight, losing my hair, being in pain, running to the bathroom, missing out on summer fun...what kind of life is that?

I go to see my GI on Tuesday and I am 99% sure they will admit me to the hospital after my appointment.  We're gonna talk about the surgery then.  I have no idea how soon they will be able to do it or if they will want to administer Total Parenteral Nutrition (TPN) to me first to get me to a healthier state.  I can't imagine having surgery at this weight knowing there would be about 4-5 days of not eating.  

If there's anything good from this, it is that I have had a colostomy before and I know what to expect.  My life right now is such misery that a colostomy doesn't seem all that bad.  All I can do is close my eyes and think about all the things I will be able to do once I have this surgery. I want to sit on the beach, drink a few beers, eat some greasy food, hang out with friends...

Hopefully I will be able to keep you updated when I'm in the hospital.  Maybe things will be better once I get some fluids and blood.  At this point they can't get much worse.