Another day, another dolla

One of the fabulous things about having Crohn's disease is that you are periodically treated to a variety of invasive examinations. Typically these tests involve nudity, starvation, and the consumption of massive amounts of laxatives. The test I'm being treated to on Monday morning is called a small bowel follow through. Wonderful.

If you are so inclined, I highly suggest you google this and read in more detail the objectives and preparation for this test. While it does involve me stripping down into a hospital gown, I will not be subject to exposing my butt or other embarassing body parts to a room full of doctors and nurses. And even though I will leave the hospital on Monday with more of my pride in tact than after a colonoscopy, this test does involve lots of the same fundamentals such as starvation, stool softeners, and gross liquids intended for ingestion.

I do kid about this because it's really the only way I can keep from losing my mind about it. I'll admit I am sensitive when it comes to these things. I can handle pain and being poked with IVs and needles like a champ. But when it comes to drinking barium or gallons of gatorade laced with Miralax, I'm a whimp. I can never drink it fast enough and I gag merely at the smell of the damn stuff. And if these people try to suggest to me that "it's just like a vanilla milkshake", I might start crying.

So you're probably wondering why I need this test in the first place? Well, after this last month of knowing my ostomy wasn't working correctly, I've been in a war of words with my surgeon. In his opinion, I am shit out of luck. However, I know the symptoms I'm experiencing are not normal and they are indicative of a mechanical problem with my stoma. My GI doctor agrees with this, thank goodness. He has been much more sympathetic and willing to listen to my complaints. Long story short, my stoma is only putting out half of what it should; while the rest continues to travel down my GI tract and into my colon. This is a problem because the whole point of surgery was to divert around my colon due to how diseased it was and the pain it caused. Thus, I am still experiencing horrible pain because essentially my colon is still doing the job it was doing before this surgery. Got it? Crazy, huh?

Okay. So the small bowel follow through will only essentially confirm this as the doctors take X-rays and see the barium continuing through my GI tract and into my colon. And I understand that doctors need tangible evidence in front of them but really my symptoms should speak for themselves. Once this test confirms what I already know, hopefully my doctors will agree that my stoma needs to be revised. But I'll cross that bridge when I get to it.

I am not looking forward to this test at ALL. The last time I had this done it took 8 hours. I am sure some of it had to do with the fact that I wasn't drinking fast enough. However, I do have a healthy small bowel which means a normal transit time and they make you take X-rays every 20 minutes until the barium reaches your large bowel. Hopefully I will be able to drink fast and walk around a bit to keep things moving. I really don't want to be stuck at the hospital all day.

The past several days have sucked, badly. There is no other way for me to describe it. Usually I can deal with the hurt and sadness this disease has brought me. But today especially, I hate Crohn's. I hate being sick. I hate my ileostomy. I hate my body. And I hate that I have forgotten what life was like before this, even though it's only been a year since things started getting really bad. Lately I feel like I have just given up hope.

I will admit I've been bitter this past week. I find that I resent anyone who has a functioning bowel and I am aware this sounds completely ridiculous. I have become annoyed and disgusted at people who complain about such insignificant things. I would give anything to be healthy. The last thing on my mind is anything material or even happiness. Because I know if I was just healthy, I could make everything else fall into place for myself.

I think about the fact that I have missed out on an entire year of my life, completely stuck inside while everyone else lives their lives and it infuriates me. It has been an unproductive year filled with days too sick to even dream about the future or pick up a book and read. It's actually surprising that I've only just become jaded now. I guess I didn't even have the time to think about it before. I find myself celebrating my friends' engagements, new houses, and new jobs but at the same time knowing that if it weren't for Crohn's, that could be me.

Sometimes I just want to give up and accept that I'll be laying in a bed for the rest of my life in my parents house. I can't even be honest with people anymore because I feel like no one understands what I am going through. And even when I am offered sympathy, it's never enough for me and it makes me uncomfortable. I want to have dreams and goals that involve more than the healthiness of my bowels. I should be dreaming about careers, relationships, and building a life for myself like other 25 year olds. Instead I lay in bed bargaining with a God I'm not so sure exists anymore.

I know in the near future, if I truly want my life back, I will have to accept another surgery to remove my large bowel and rectum. I guess mentally I can not fathom that this is the hand I've been dealt. After 8 years of this shit, I still don't believe it sometimes.

I am so afraid to have another surgery because I don't know if I am strong enough to deal with it. As long as my ileostomy is temporary, I can always cling on to the hope of having it reversed if we find a medicine that works for me. But if it's permanent, that's it. For the rest of my life I'll have a bag with no possibility of ever being normal again.

And this is my problem; that I still think I could be normal even though I have this horrible illness. I know I need to accept a new sense of normal for my life, one that will allow me to get back to being the person I was before. For someone who would hate to be normal in every other facet of life, I would give anything to have normal bowels. It sounds like a no brainer in theory to just have the damn surgery and get my life back. I just cannot fathom the finality of it all and I know I am not ready. But really, I don't imagine that I will ever be ready.

Support group

I just returned from an Ostomy support group meeting at Fox Chase Cancer Center. My mom and brother work there, otherwise I would have had no idea they even met there. The center is only 5 minutes from my house and I figured I had nothing to lose. Other ostomy groups only meet every other month so I wanted to jump on the opportunity to get to a meeting now, especially with how I've been feeling lately.

I've had some unexpected bumps in the road and it turns out I'll need to more aggressively pursue a treatment for my Crohn's. I was hoping for a few months of being med-free and not worrying about which crazy drug I will have to experiment with next. I feel like my surgeon really didn't explain some of the problems I could still experience after the surgery. I guess it isn't turning out to be the cure-all I thought it would be. Since I opted not to have my rectum and large bowel removed, my disease is still somewhat active there even though, hypothetically, nothing should be passing through (that's a whole other story). So now I must go back to see my GI and discuss more treatment options. No need to worry, however; I'm certainly not as sick as I was before, just experiencing some crappy symptoms that make life a little bit more challenging. Nothing I haven't dealt with before but definitely frustrating considering how well I felt post-op.

Anyways, I found the support group somewhat helpful and I think I'll go back next month. The people were all extremely nice and open to sharing their experiences. I think they all pitied me because I was the only young person there. But really, I felt more bad for them because most of them had their ostomy surgeries due to cancer. Most of them had Urostomies and there were actually two people with BOTH a Urostomy and Ileostomy. I couldn't imagine! There was only about 3 other people with Ileostomies but they happened to be the most vocal people in the room, so I got a lot of insight and even found myself nodding along to their stories because I knew exactly what they were talking about.

I was glad to meet the ostomy nurse at Fox Chase just cause she seemed a lot nicer than the one I dealt with post-op in the hospital. Not that mine was mean or anything but I think it takes an exceptional person to be able to make someone with an ostomy feel comfortable enough to talk to them. I'm the kind of person who would rather endure the difficulty of trial and error rather than just seeking someone out so its nice to know there is a nurse I would feel comfortable talking to.

They had a speaker who was the Vice President of the United Ostomy Association. His talk was very informal and consisted of him sharing information about the association as well as his own stories from living with an Ileostomy for 20 years. Again, this was helpful because as far as I know, no one else in the room but him and me had Inflammatory Bowel Disease. He really didn't say anything I hadn't already known but I guess it's always helpful to see first hand that it is possible to live a normal and happy life with this condition.

Anyways, that's it for now. Hopefully I'll have some better stories to share soon!

Hospital pics and thereafter

The view from my hospital room. Not too shabby. It was great every morning to sit up in a chair and watch the sun rise.

Absolutely horrible pic of me but you can see how damn white I am!

A very classy self photo of me post-op at 98 lbs. No one would take a photo of me! I'll have you know I've happily gained at least 10 lbs back.

And Rudy...just cause he's so darn cute. Look at his face!

:(

Dear Hair,

Please stop falling out.

Love,

Ellen

La la la

Every year when May rolls around I patiently wait until the first time I see one of my favorite beers out at the bar. Once the weather begins to warm, I specifically start abandoning the lesser known hole in the wall bars where I sip on Coors Light bottles during the winter. I know all the hot spots in the local area where I can find my favorite summer beer on tap. And so I head out to these "classier" joints just to pay 4 more dollars than usual, all so I can sit with my friends and sip on some Sam Adams Summer Ale.

It started years ago when my guy friends (Dan, Matt, & Brian; holla!) introduced me to the wonderfulness that is Summer Ale. There is something celebratory in my first pint at the beginning of every summer season. The Ale is fresh and easy to drink and for someone who isn't necessarily a beer expert, it's a nice departure from the domestic light beers I drink at other times. Every year I look forward to this ritual. It brings me back to the summer past and helps me look forward to the months ahead of warm weather, summer holidays, and my birthday. I don't know what it is, but drinking this beer surrounded by my friends with thoughts of the summer is pure bliss.

Throughout the past few weeks of recovery, I've been looking forward to my first Summer Ale pint of the summer. In some ways I feel like I missed out on a lot these past few months. But the summer isn't quite over...yet. There is a lot to celebrate still and what better way to do it then with your favorite summertime beer?

So today I ventured out to the bar to celebrate a good friend of my sisters' birthday. It was the first time I have really been out somewhere socially since surgery and I couldn't think of a better time to test the waters than when I had support from Nora and Ryan. Beforehand, my sister assured me we could leave whenever I wanted. All I had to do was say the word.

I was so excited when we got to this particular bar because I know they carry Summer Ale every year. I was quickly disappointed, however, because even though they were still rocking the Summer Ale tap, they were out of it. In the words of the bartender, "It's a seasonal beer. It's not summer anymore." BUMMER. Anyway, Ryan got me a nice wheat beer that I nursed for the two hours we were out. It was no Sam Summer but sipping on that beer surrounded by friends was a good enough substitute.

Now before I left my house, I made sure to switch purses to a large tote that I stocked with extra bags, sprays, and wipes just in case my ileostomy needed attention. I put on a smaller bag with a closed end that looks better with the type of clothes I wear. I was prepared that if it happened to get full, I could take care of things in the bathroom.

Throughout the night I was sweating my buns off. My pants were sticking to me, my hands were clammy, and I was paranoid that my bag was leaking. I kept sticking my hand up my tank top to make sure. The problem was that I was sweating so much the part of my bag attached to my skin was feeling wet even though it really wasn't. That feeling of wetness is enough to make me paranoid that something is going horribly wrong when it isn't.

By the time we were going to leave, my bag had filled a little but nothing noticeable. I'm finding that my normal clothes and style don't interfere with having an ileostomy at all. I was never one to wear things skin tight and I am a huge fan of layers. Maybe that's why I was sweating! Anyway, after laughing my ass off and seeing old friends, I felt good. "Baby steps" is what everyone keeps telling me and I think I took a small step in the right direction today.

I'll be celebrating Labor Day this weekend and the end of summer at Nora and Ryan's with some friends and family. I'm planning on packing all of my usual summer activities into the month of September, so even though it might be the end of summer, mine is just beginning. I am looking forward to a nice bbq this weekend, a postponed birthday celebration, a trip to the Phillies game, and a relaxing weekend at the shore. There is much to be thankful for, and even though I didn't get my celebratory pint of summer ale tonight, I'll settle for a bottle on Saturday.

Days like today

Every once in a while I feel inspired. It's been a while but I'm sure you can relate to days where you feel invincible, like you can do anything. Lately I've been feeling like that every day. It's amazing that merely not laying in your bed all day every day can do such things. For me my victories lately have included the simple act of walking my skinny ass downstairs, getting a drink for myself, and watching TV on the couch rather then from my bed. I no longer have to call my mom's cell phone from upstairs and ask her to bring me water. I can do it myself and even though my legs are weak and I can't stand up entirely straight, I'm back to helping myself. These small things may seem trivial but they give me hope because I honestly thought I would never get out of the hole I was in.

Independence for me is extremely important. It's not my personality to sit inside all day or rely on someone else to take care of me. I drove my car the other day for the first time since APRIL! I will admit I seriously forgot that you had to push down the clutch to start my car. I had to think consciously about what I needed to do to shift from neutral to first gear. But quickly I got back into the grove and I was cruisin along Tookany Creek Parkway with my windows down, AC blasting, & my music way too loud. It was just like old times. It is amazing how fast you can get back to that place even when you've been laying in a bed for months.

The other day I was finally able to leave my house without wearing a trusty protective undergarment. Now that my large bowel is completely out of commission, it's finally settled down from surgery and there's nothing left in there to cause me control problems. Again, such a simple change but my goodness, I was able to wear JEANS today. No baggy sweatpants or shorts to cover the fact that I need to wear a diaper like an old person. So excitedly today I found my "skinny jeans" and rocked those bitches even though they were still baggy. On a side note, I've gained about 7 lbs now. I was down to 98 at one point after the hospital.

In all honesty, I've been adjusting to the ileostomy better than I imagined. I've read and talked to people who have said the worst part is the first 2 months because you are still learning your body and how to care for the ostomy. Maybe I'm just ahead of the curve because I had a colostomy previously. I'm sure it will be harder once I venture out into the real world more and more but I think I'm ready because nothing could be as worse as laying in a bed in pain.

Stay tuned for more stories and adventures...