Appreciating Life

Ask anyone who has suffered with a chronic illness and I bet they'll agree that living with a chronic illness changes one's perspective on life. When things are bad, they're bad and it feels like they're never going to get better. But when things are good, you see life through a different lense than most people.

Although I've lived with rheumatoid arthritis since I was a baby, this new perspective on life didn't really hit me until about a year and a half ago when I started the process of the j-pouch surgeries. I think I didn't feel this way with the arthritis because it's something I have always lived with - I don't know life without the arthritis. When I was diagnosed with ulcerative colitis my thinking was "well, just another thing to add to the list", meaning that my life changed a little bit but not significantly. However, when the last flare started and I began the process of the surgeries, my life was turned upside down. There have been so many ups and downs within the last year and a half that when I feel good I appreciate every second of it and want to take advantage of it as much as I can. I now appreciate the smallest things that most people don't even give a second thought - eating whatever foods I want, taking a shower, sleeping in my own bed, walking my dog, going to the gym. I find myself on a daily basis savoring that piece of chocolate just a little bit longer, or doing just a little bit more at the gym - because I can. And now I appreciate that I can.

I'm in the News!

A few months ago I was asked to be part of a campaign for UC Irvine Medical Center where I had all my surgeries. There are four of us patients featured and the campaign is finally out! You can see my story at:

www.healthcare.uci.edu/surgery/colorectal/ (the "Spotlight" on the right side)

www.ucihealth.com (the pictures on the top rotate and mine is the second one)

My add is also going to be in the Orange County Register on October 31 and The LA Times-OC section on November 7.

For those who don't live in Orange County, my ad should also be on OC Register and LA Times online on October 24th.

I am so excited to be a part of this campaign and to get the word out about Ulcerative Colitis!

Surgery Number 4

So I got home a couple days ago from the hospital after having surgery number 4: Surgery to tack down my j-pouch to my tailbone. Yep, it was as wonderful as it sounds. I will continue this chapter of the saga from my last post so that I don't have to repeat everything. If you read my last post you will know that I ended up in the hospital because my j-pouch twisted. I am one of the lucky but unlucky ones who apparently doesn't grow a lot of scar tissue. See, most people who have the j-pouch grow enough scar tissue to hold the pouch in place. I, on the other hand, did not so my pouch decided to have a little party in my abdomen, doing the twist all over the place.

Anyway, after my last hospital visit, my surgeon wanted to wait a little bit to see if things would essentially fix themselves so that we could avoid this surgery. Well a couple weeks later I was all twisted up again, so back in the hospital I went and this time surgery was a definite. Four days after being admitted to the hospital, surgery was on. When my doctor opened me up he found that my pouch had basically twisted around 360 degrees, pulling more intestine down with it underneath a fat pad that grows behind the intestines. I know, totally weird! So, my doc straightened me out, tacked down a piece of dissolvable mesh to my tailbone, and sewed my pouch in two different places to the mesh. The hope is that by the time the mesh dissolves, which takes about a year, enough scar tissue will grow in its place to hold my pouch in place. Keep your fingers crossed! While he was in there, my doc also revised the scar where my stoma was so that it's now a flatter straight line instead of an indented circle, which I am thrilled about. So once again, I have four incisions that need to heal, but all of them are incisions that were used in previous surgeries: Two laproscopic incisions, the stoma incision, and the bikini line incision from my second surgery.

I am now home recovering after 12 days in the hospital because my intestine decided to stay asleep longer than it should have and I'm hoping that this will be the last chapter in the J-pouch Saga. I've got some work ahead of me since from the time this mess started until now I've lost almost 15 pounds, so I have a lot of weight to gain, once again. I'm working my way up with food, hoping to try some plain pasta tonight and hoping to be eating some baby back ribs and french fries in a couple weeks!

Another Year, Another Hospital Stay

Yesterday I got home from a 7 day stay in the hospital because my j-pouch twisted. Yep, you read correctly, it twisted. Yet another anomaly that I get to experience. My docs were able to untwist it but I'm still not feeling normal, so we'll see how things go. Surgery to tack down my pouch will probably be in my near future. Le sigh. Anyway, those who have been lucky enough to stay in the hospital know how much it sucks and while I was there I created my list of the suckiest things about staying in the hospital. Here goes:

1. People staring at you like you're an alien when you walk the halls.
2. Docs and nurses watching/waiting for you outside the door while you are going to the bathroom - can you say performance anxiety?
3. For the next year, every time you see someone, "How are you doing?", "You look good", and my personal favorite "Your color looks good".
   
4. Feeling dirty and disgusting
   
5. Everyone you know, plus their friends and family, plus their friends and family, ect. knowing your business.
6. Feeling like you are part of some science experiment gone wrong when all the docs are standing over your bed.
7. Which is worse? NPO or cafeteria food?
8. "Have you had a BM yet today?" "Yes" "Next time don't flush I want to see". Is there any question as to why I kept "conveniently" forgetting to do this? Yuck.
9. IV lipids
10. Being woken up every few hours for vitals, IV fluid changes, yatta, yatta, yatta.
11. NG tubes
    
    

Needless to say, I'm still a little bitter :-)

We Did It!

Well, my j-pouch and I made it to Massachusetts and back with absolutely no problem! In fact, we did great!

We walked all over Boston.

We ate Bobby Flay's favorite sticky bun at Flour Bakery and Cafe. Yes, it was as delicious as it looks. In fact, I'm drooling right now just thinking about it.

We stayed out late at a bar and had a few drinks.

We watched my brother get married. *tear*

We partied the night away at the reception.

We met George the mustache cat.

And we kicked ass at Baggo.


I'd say it was a successful trip!

My J-pouch and I Are Flying for the First Time

On Tuesday my J-pouch and I will be flying for the first time together to go to Massachusetts for my brothers' wedding. I have to admit, I'm scared. After all, it hasn't been that long since I had to think about the "what ifs" before every outing. I know there should be no problems and my mind is still probably in UC mode but I can't help but freak out a little. What if something goes wrong? What if the change in pressure makes me uncomfortable? What if I have to go to the bathroom on the plane and people are waiting? What if I don't feel well while I'm there? I know I just need to stop worrying about things that most likely are not going to happen and focus on the exciting fact that my brother is getting married and I'm actually able to go, but I'm sure you IBDers can understand. Anyway, I'll update when I get back. Wish me luck!

Frustration...

Living with a chronic illness can be incredibly frustrating. As I sit here writing this my knee is swollen and hurting and my insides are rumbling from the bagel and cream cheese I ate for breakfast. Life with a chronic illness means doctors appointments, medications, diagnostic tests, sometimes surgeries, pain, feelings of loneliness, and uncertainty. I think that when you have a chronic illness, it’s important to learn how to live successfully. What I mean by this is that it’s important to take control of your life and to learn what you can do to make things a little easier for yourself. Here are some things that might help:

• Find a support network: Many people who have chronic illnesses find that going to a support group is incredibly helpful…myself included. The reason being that it is wonderful to have people to talk to that genuinely understand what you are going through. Family and friends can be of great support, but frankly, they just don’t understand.
• Find a doctor you gel with: No matter what illness you have, there are many doctors around to treat it. It’s important however, to find a doctor you feel comfortable with and who matches your personal style.
• Educate yourself: Learn everything you can about your illness and the medications you are taking. That way you have some knowledge of what you can expect and you can be an active part of your treatment.
• Ask a lot of questions: Ask your doctor what you can expect to happen down the road with your illness. Ask your doctor a little bit about the new medication you are about to start taking. Ask if there is anything you can do in your daily life to make yourself more comfortable (i.e. diet, exercise).

Life with a chronic illness means a new normal. Things are never going to be like what they were before you were diagnosed. However, that doesn’t mean that life can’t be good. Having a chronic illness forces you to take a good look at yourself and to appreciate life in a whole new way.

8 Things to Avoid When You Have IBD

There are so many things to do and not to do when you have IBD (inflammatory bowel disease). In my experience, these are the top 8 things to avoid when you have IBD:

1. Stress - While there is no known cause of IBD stress can definitely be a trigger. Now you are probably thinking "How in the heck am I supposed to avoid stress? That's impossible!" While I know it's hard to avoid stress completely, reducing stress can be a great benefit to you. Everyone has different ways of reducing stress. For some, including myself, it's by exercise. Others reduce stress by reading or watching TV. Find something that works for you.

2. NSAIDS (Non-Steroidal Anti-Inflammatory Drugs) - This is a big one. Many gastro's advise their patients to avoid long-term NSAID use because they can cause serious adverse affects in people with IBD. They can cause ulcers in the stomach and first part of the small intestine, and they can worsen bleeding and inflammation. I have firsthand experienc with this, and let me tell you, it's not fun.

3. Certain Foods - Now this varies from person to person. While certain foods don't cause IBD they can trigger a flare or cause discomfort and worsen diarhea. It's important to find what foods work for you and what don't. While you are trying to figure this out, keep a food journal to help you out.

4. Dehydration - It is so important to be aware of dehydration when you have IBD. Because of all the lovely bathroom trips that come along with flares, it's essential to make sure you are getting enough liquid every day.

5. A sedentary lifestyle - This is going to vary from person to person, and it's also going to depend on whether you're having a flare or not. For me, before I had surgery, I was very active. I went to the gym 3-4 times a week and also did yoga. When I had a flare though, I couldn't do as much and cut back on most of my exercise until I felt better. Find what works for you. Some sort of exercise is important though, not only because it's good for your body, but because it's good for your mind too. When you exercise, your body releases endorphins which not only put you in a better mood, but help with stress as well.

6. Malnutrition - When you have IBD and are having a flare, it is really easy to become malnourished. You don't have an appetite. You are in pain. You are constantly running to the bathroom. Because it is so easy to become malnourished it is essential to get the nutrients you need in some way. It helps to eat small meals throughout the day. Find nutritional food you can tolerate. Drink protein drinks. Take supplements in pill form.

7. Isolation - Having a disease like Crohn's Disease or Ulcerative Colitis can be very isolating. People who haven't experienced these diseases just simply don't understand what it's like. Not only that, quite frankly, it can be embarrassing! However, isolating yourself will only make things worse. Find an IBD, J-pouch, or Chronic Illness support group. I go to one, and let me tell you, it is so helpful to talk to other people who understand what you are going through!

8. Smoking - Especially if you have Crohn's. People who smoke, or who have smoked in the past, have a higher risk of developing Crohn's than those who don't smoke. Crohn's disease patients have a higher risk of relapses and repeat surgeries. Interestingly enough, in patients with ulcerative colitis, nicotine has been shown to have a positive short-term effect on those having a flare. I AM NOT TELLING YOU TO SMOKE PEOPLE! I'm just saying, there is research going on now on the effectiveness of nicotine patches in controlling flares in patients with UC.

Well, that's all I've got for now...stay tuned for more.

The Beginning...

If I had a dime for every time I have heard the phrase "Your color looks good" in the last year I think I'd be rich! Since this is my first post, I guess I'll start with a little background:

My story began about 3 years ago when I was diagnosed with ulcerative colitis. I was 25 years old. Since then, life has been a little bit of a roller coaster; mostly good, with the last year being the most challenging time of my life. So that I don't go on and on I'll just give you the short version (well at least I'll try). On April 14, 2009 I was admitted into the hospital with a flare that I had been trying unsuccessfully to get under control for the last 2 months. By that time I had lost almost 30 pounds (I started at only 108 lbs so losing 30 pounds was not a good thing!) and was extremely ill. On May 5th, I had my first of 3 surgeries, which was a total colectomy (in layman's terms, I had my colon removed). Yes, you can live without a colon! For the next 5 months I was to live with a temporary illeostomy and endure 2 more surgeries. If you don't think that's bad enough, wait there's more! After my first surgery, I had lost so much weight that a fat pad that allows food to pass into your stomach closed and I had to have a tube down my nose into my stomach for 3 weeks so I could "eat" through the tube. Oh, I almost forgot the two blood clots from picc lines and the three months of blood thinners I'd have to take because of those suckers. How could I forget that?

Three months later was my second surgery where the doctors created my J-pouch, an internal "pouch" made out of my small intestine that would essentially act as my new colon. I know... weird. From the beginning, my body did not react well to this surgery. I was vomiting the day after surgery which meant...yep, you guessed it...another tube down my nose into my stomach. I only had this one for 3 days though. Three weeks after surgery I became sick again. For the next month, I had no appetite, was nauseous, incredibly weak and was losing weight. Basically I felt like hell. And to top it all off, my incision wasn't healing correctly so my surgeon had to cut part of it open again and I had to pack it with gauze for 8 weeks. Yes, it's as gross and painful as it sounds. After an ER trip, 3 day hospital stay, and a tube in my stoma (aka Stomie the Clown), I had my final takedown surgery a month early. My surgeon found that I had scar tissue that was not letting food completely pass through which was causing all my problems.

My takedown surgery went off without a hitch! It's now been 8 months since my final surgery and I'm doing great! I've gained back almost all my weight, I'm active, and lovin' life. My purpose for this blog is to use my experiences to get the word out about IBD (inflammatory bowel disease) and other chronic illnesses and to help those suffering from them. IBD and chronic illness can create so many emotions including anxiety, depression, fear, and helplessness. I found that it helped tremendously to have someone to talk to who had been through what I was going through and to get educated (just not too educated...you don't want to scare yourself with what could possibly, but probably won't, go wrong).

Anyway, that's all I got for now...stay tuned for more...