Meeting My Ostomy Nurse

June 21, 2010

I met my ostomy nurse this morning. She explained the basics of an ileostomy to my mother and me. We also watched a short video that did the same thing, and she gave me a little booklet with fun illustrations. I didn’t have too many questions to ask her, since I’ve done a good bit of online research. Thank God for the internet, because I would definitely not be as knowledgeable without it.

She also marked the location on my stomach where the stoma will be placed. It was a no-brainer where it would go, because I have two large creases in my stomach, so it had to go directly in the middle of them on my lower abdomen. I’m going to post pictures of my pre- and post- surgery belly on the pictures page.

In about 3 hours, I’m going to drink the awful, horrible, disgusting prep poison juice, and spend the night on the toilet. Surgery is tomorrow. Good luck to me!

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I got my surgery prep instructions in the mail the other day. Nothing too difficult or radically different than, say, colonoscopy prep. Not that colonoscopy prep is anywhere near easy.

On the day before the surgery, I am only allowed to eat a clear liquid diet. This includes broth, clear carbonated drinks, gatorade, jello, popsicles, etc. In my experience with colonoscopy prep, I have never been in the mood to eat the broth or jello, so I usually just sip soda or juice all day. I don’t have the best appetite right now anyway, so not eating won’t be that big of a deal for me.

At 10am on that same day, I am supposed to take two bisacodyl tablets, which is a laxative. I actually have my appointment with the stoma nurse at 11am that day, so I think I am just going to wait until I get home to take the tablets. I don’t mind taking these since I’m used to pooping all day anyway. Tablets are easy.

The unfortunate part of the whole process starts at 6pm that day. I am gagging just thinking about it. I have been scarred for life from this stuff. I will have to drink 2 liters of HalfLytely solution (also a laxative to clean out my bowels). I am supposed to consume one 8 ounce glass every 10 minutes and basically chug the glasses. I get to choose from pineapple, orange, lemon-lime, or cherry flavoring. CRY. This stuff makes me so nauseous. I am almost 100% sure that I am not going to be able to finish the whole thing, but I will try. I finished all of it for my last colonoscopy prep, but that time I got to mix miralax with gatorade; it still made me nauseous, and I still vomited some up though. I am honestly dreading this more than the surgery itself. I hope that I never have to drink it again after I get this done.

The only other real instructions I had were to visit my primary care physician for pre-op testing. I did that today. The actual appointment was relatively painless. My doctor looked at me briefly, wrote out a bloodwork order, and sent me on my way. I went and got my blood drawn, and I was done for the day.

On the day of the surgery, I am supposed to take a shower with some special soap that my surgeon gave me during the consultation. Fun.

My surgery is now scheduled on June 22nd at 12:50pm with a 10:50am arrival time. It was originally scheduled at 8:00am, but apparently they had to move it later to get an assistant for my surgeon. This is about when panic mode strikes, haha. I spent this morning hunched over feeling pukey though, so I am definitely ready for that to stop.

I was diagnosed with Crohn’s Disease when I was 12, and I have dealt with the disease and various medications for 10 years. Both the illness and the treatments have had an effect on the way my body looks and how it functions. I often wonder what would be different if I never presented the disease at all or if I didn’t get it at such an early age. In this post, I’d like to outline some of the effects that I’ve experienced in my case.

Obviously, the biggest effect on my body has been the severe inflammation of my colon. Luckily, my Crohn’s has only seemed to manifest itself in my large bowel and rectum, and I haven’t shown any indication of it spreading to my small intestines though it is a serious and concerning possibility. In a nutshell, Crohn’s disease is an autoimmune disease in which the body’s immune system attacks the gastrointestinal tract. Along with the severe inflammation comes abdominal pain, diarrhea, bloody stools, fevers, weight loss, loss of appetite, and thickening of the bowel wall. I have had horrible days where I have had to use the bathroom 15-20 times a day. I have had to plan out in my head when I could use the bathroom between classes, between walking from my car to classes, before/during special events, before/during work…you name it. I have been incapable of browsing for books and clothes and greeting cards without having to stop in the middle and find a bathroom, sometimes more than once. Even if I could find a medication that could cure all of the inflammation right now, it is possible that the interior of my bowel wall is so scarred and damaged that it would never regain perfect function again.

Crohn’s disease has had many effects on me besides the main attraction of my shoddy colon.¬† Since my immune system is busy attacking my good parts and since I have to be on immunosuppressant medications, my immunity is compromised. Likely, if I am near anyone that is showing signs of being sick, I will catch whatever they have, so I have to be super careful. Once I’ve already become sick, it’s tough for my body to fight it off as well. One time, I got strep throat really badly, and my entire face swelled up…pretty awful.

Diarrhea, blood loss, and poor absorption of nutrients have resulted in poor blood test results. I have a lower red blood cell count than normal (anemia), which causes me to feel very fatigued. I am also deficient in iron and calcium. I have had a bone scan, and due to calcium deficiency, I have osteopenia, which means that my bone mineral density that is lower than normal but not low enough to be considered osteoporosis.

Crohn’s disease itself has made my body weaker and has made life more difficult to live, but even the medication that can make the pain a little better can have pretty bad side effects. I am going to focus on the side effects of prednisone (a steroid used to control inflammation) since those seem to be the most noticeable and plentiful.

High doses of prednisone cause increased appetite which I experienced fully. My stomach was a bottomless pit that could continuously devour any food in its path. Prednisone caused me to have severe weight gain. At my heaviest I was probably 175 pounds, normal MIGHT be 140 pounds (although I don’t really know what normal is anymore), and right now I’m at about 115 pounds due to flaring. This extreme fluctuation has caused my skin to have deep stretch marks in places on my upper and lower back. I also have less obvious ones on my thighs and abdomen. Probably most depressing are the stretch marks on my breasts which have caused them to become *ahem* less perky than a normal 22 year old’s would be.

Prednisone comes with even worse social stigma than just normal weight gain though. The most dreaded aspect of this medication to a young woman is the “moon face” that comes with a high dosage. Basically, your cheeks BALLOON out like a chipmunk. Or a hamster storing food. You also gain about 7 more chins than you originally had. You can’t hide this. It is your FACE. You feel like you have to explain your appearance to people, since it looks pretty unnatural, but most of the time I chose just not to mention it.

There is also the embarrassing peach fuzz that seems to grow all over your body and in inconvenient places (like the eyebrow and mustache region), the loss of hair from where it is supposed to be on your head, and the horrible acne all over. It also comes with night sweats, a disturbed sleep cycle, thin skin, decreased ability to heal wounds, and more decreased bone density! Sometimes my heart races and jumps and I can feel my pulse in my neck when I am just sitting still. And you have to choose between these things or not being able to stand up straight because you’re doubled over in intestinal pain! How unlucky!

This is why I am electing to do the colectomy/ileostomy surgery (another case in which the disease will have drastically altered my body), and I am hoping and praying that it will give me a normal life free of disease and medications! I finally got my surgery date as well! I am scheduled to have my surgery on June 22nd (so close yet so far away)! I am expecting a letter from the surgeon’s office that contain my preparation instructions and I am also expecting a call from the ostomy nurse to set up my meeting with her. Until then, I am still learning and playing the waiting game.

World IBD Day!

May 19, 2010

May 19th is World IBD Day!

I feel this is appropriate since Crohn’s and surgery are pretty much all I have been focused on for the last couple of weeks. I just had my last day of work on Sunday; I hadn’t been giving 100% at work anyway recently since I’ve been feeling bad, and I wanted to have some time to prepare mentally and physically before surgery. I work at an animal hospital as a technician, so work days can be long and stressful and I’m always on my feet. They took me off the payroll since I do not know exactly when I’ll be able to return, but I’m hoping and praying that they will hire me back with no problems after I’m ready to work again, because the employees there are like a second family to me.

Now I only have 2 more exams left this semester, then I can rest until my operation. My health has really suffered this semester, and I’m struggling to pass at least one class, but I just want it to be over now.

In a week, my mother wants me to have one last vacation with her in Myrtle Beach, South Carolina before I get my surgery. I am only going because she really wants me to. I am honestly not looking forward to the long drive. Hopefully, this will be my last vacation ever as a sick person.

I have been feeling the worst in the mornings, which is the usual for me. Sometimes it is difficult just to stand up straight or to walk. I don’t ever want to eat in the morning either. I’ve also been sleeping in later to help get past the early morning woes.

I still don’t have an exact date scheduled, but I can’t wait. Waiting always stresses me out. I’ll update when I get my appointments scheduled, and after meeting my ostomy nurse.

Meeting My Surgeon

May 5, 2010

I got a voicemail on my phone today as I was driving to school that said I could get an early appointment with the surgeon at 2pm today if I could make it. I got the message at about 12:15pm, and I decided that it would be worth it to skip my class and call out of work so I wouldn’t have to wait another month to get the ball rolling.

My surgeon was very helpful and explained things very clearly. She was very willing to let me ask as many questions as possible and made me feel very comfortable about everything. At this point, I don’t feel like this whole thing is going to be a very big deal, but I don’t think I will fully realize what it is going to be like until it happens. Everything is pretty surreal at this point.

According to the doctors, I’ll have to have a permanent ileostomy. My rectum is pretty diseased and unhappy, so they have to take that out as well as the rest of my colon. I won’t be able to have the opportunity to have a J-pouch, but I am not sure I would want to go that route anyway. Something about creating a pouch that could fail out of my remaining healthy intestines is kind of scary. A K-pouch might be convenient if it was successful, but it’s not really for Crohn’s patients. Therefore, permanent ileostomy is the path we are taking.

I’m kind of happy that this is when it is happening; it could have been a really inconvenient time. I can finish out the last couple weeks of school and final exams and recover over the summer. I want to go to veterinary school eventually too, so at least it is not interrupting something like that.

They are going to call me soon and set up an appointment with an ostomy nurse and a date for surgery. I’ll probably be in the hospital for about a week afterwards, then I’ll probably be recovering for 6-8 weeks. Crossing my fingers and hoping this is my “cure.”

I lived a great deal of my young life as a normal child. Well, I wouldn’t go so far as to say “normal”… but I was healthy. I enjoyed playing outside, running around, eating pizza and ice cream, and living in my imagination. I thought I could do anything; nothing could stop me.

Then, I was diagnosed with Crohn’s Disease. It was January of the year 2000, and I was 12 years old. The times surrounding being ill before actually being admitted to the hospital are a little blurry, but I believe that I was living with the symptoms of Crohn’s for a good period before that. I was NOT enthusiastic to share the details of my excrement with anyone, so I struggled along for a while hoping it would just go away. I hid my symptoms from everyone; my doctor would often later describe me as stoic. I had severe bloody diarrhea and anemia and couldn’t eat when I finally went to the doctor.

My pediatrician recommended that I go to the emergency room. Young and afraid, I actually lied about the severity of my symptoms, something I’m not proud about. It’s hard to lie about having blood in your stool when you’re forced to poop in a cup and show it to someone though. I was referred to an awesome pediatric gastroenterologist, and had a colonoscopy done which confirmed that I had severe inflammation in my colon. Diagnosis: Crohn’s Disease.

I was in the hospital for about a week. I was put on a ton of drugs including high doses of the dreaded prednisone. I suffered with the social stigma of having a moon face and gaining a ton of weight, but I felt better. Some kids asked questions or poked fun at my ballooning cheeks, but it was a temporary issue… or so I thought.

Year after year, I tapered off prednisone, flared up again, started taking prednisone again, felt better, tapered off, and started the whole vicious cycle over again. I had multiple hospital stays (each lasting about a week) in my young life, and my doctors kept changing my drug of choice, but the only thing that really seemed to make me feel better was the prednisone. Prednisone with nasty side effects, unrecommended for long term use.

Some relief did eventually come when I was around 18 or 19 years old, but it didn’t last very long. My doctor suggested that I try remicade (also known as infliximab). Taking remicade meant that I would have to take a few hours every 6 to 8 weeks to get an IV infusion as an outpatient. They would pre-medicate me with benadryl that would really knock me out, so I was useless for pretty much the whole day. However, I felt like remicade was a MIRACLE drug. I felt amazingly better just hours after the infusions, and I would have almost normal-person bowel movements! I could eat whatever I wanted and felt great! Infusion days were almost like a vacation. I got to sleep in a big, comfy chair, my nurses were amazing, and it refreshed and regenerated me. I did this for two years; then, the medication stopped being as effective. I started having to get a higher dose at shorter intervals. Eventually, it was only making me feel okay for about a week before I would start having the same old symptoms. Medication was failing me again.

I ended up being hospitalized again, being referred to an adult GI, and trying even more medications. I tried humira, which involved giving myself an injection, and cimzia, which involved a home nurse giving me injections. I noticed absolutely no improvement from these two medications at all. Well, crap. Literally.

Currently, I am 22 years old. I am on flagyl, ciprofloxacin, and colazal, but I honestly see no improvement whatsoever from these either. I was on 10 mg of prednisone a day, but still experiencing stomach pain, diarrhea, and loss of appetite, when my doctor suggested that I should have surgery to remove my colon to alleviate my symptoms. Some days, it was a struggle just to get out of bed and WALK. I felt like my colon was going to fall out.

I have an appointment scheduled with a colorectal surgeon on May 28th to discuss my options. I almost felt like I wasn’t going to make it until then, but my doctor allowed me to increase my prednisone dose to 20 mg a day. I am feeling some prednisone side effects such as hot flashes and inability to sleep, but I think my colon will hold out until I get everything situated.

I will update further after my appointment with the surgeon. I certainly have my doubts about the possibility of a permanent ileostomy, but really what am I holding on to? My colon has been severely inflamed for years, I can’t stay on prednisone (and don’t want to), and I’m sick and tired of feeling sick and tired! And wouldn’t it be better to get this operation done the right way by a doctor I trust and on my terms, when the alternative could certainly be ending up having¬† emergency surgery in the middle of the night at a random hospital after a bowel perforation?

So, here’s to taking risks and making major life-altering decisions. Here’s to good health and taking my life back. Hopefully, with this blog, I can document my transition from my life as a sick person to my life as a healthy person.