The Mind-Gut Connection and IBD

Do you ever wonder why you get “butterflies” in your stomach when you get nervous, or wonder where the term “my stomach is tied in knots” came from? It’s because we have a second brain! Yep, you read correctly, we have two physical brains. Everyone is familiar with the brain enclosed in our skulls but most people do not know that we have a second brain in our gut. In fact, over one half of our nerve cells are located in our gut. Our “gut brain” also contains neurons and neurotransmitters just like those found in our head.

Our two brains communicate with each other via a major nerve, called the vagus nerve, that extends down from the base of our brain all the way into our abdomen. Because of this, our two brains directly influence each other. This is why when we are nervous or stressed out about something we feel it in our stomach as well.

How is it that we have two brains?
During early fetal development, both our “gut”, which consists of our esophagus, stomach, small intestine, and large intestine (colon), and our primary brain start to develop from the same developing tissue. Once that piece of tissue divided, one piece grew into our central nervous system (our brain and cranial nerves) and the other piece grew into our enteric nervous system (the “gut”). During later stages of development, these two brains became joined via the vagus nerve. The vagus nerve is the longest of all our cranial nerves and is responsible for carrying a wide assortment of signals from our brain to our gut.

Because of the direct connection between our brain and our gut, the condition in which our gut is in has a profound effect on our psychological state. If our gut doesn’t feel good, usually our mind doesn’t either.

Your emotions and your “gut brain”
Feeling stressed, anxious or depressed can have a significant effect on our “gut brain”. Everyone at some point has experienced the connection between our emotions and our gut. When we are stressed, our stomach “ties itself in knots”. When we are nervous or anxious we get “butterflies” in our stomach or our stomach gets “fluttery”. The connection between our emotions and our “gut brain” can also lead to stomach upset, including constipation and diarrhea, indigestion, ulcers or spasms.

How does the mind/gut connection affect your inflammatory bowel disease?
Some of the research related to the mind/gut connection has found that dysfunction along the pathways between the mind and the gut may contribute to some of the symptoms of IBD and IBS such as the abdominal pain and diarrhea. When nerves in the gut experience excessive sensitivity they can trigger changes in the brain. Thoughts and feelings as well as activation of the parts of the brain that have to do with anxiety or arousal can stimulate exaggerated gut responses.

So, how can you control your mind/gut connection to help improve the symptoms of your IBD?
Although it is known that Crohn’s disease and ulcerative colitis are definitely physically based and not psychologically based, there are actions that can be taken that may have a direct impact on the communication between the brain and the gut. One of these is cognitive behavioral therapy, which concentrates on the relationship between our thoughts and feelings. Connected with cognitive behavioral therapy are relaxation techniques, which can help to turn off the stress response that contributes to our mind/gut connection. So read about the relaxation techniques in my last post and start putting those to good use!

Tips for Caregivers

Being a caregiver to someone who has a chronic illness can be a difficult role. You want more than anything for your loved one to be healthy again but there is nothing you can do to make that happen. You may feel helpless and frustrated and unsure of what you can do to help your loved one. Here are a few “do’s” and “do not’s”:

1. DO listen – Sometimes your loved one just needs you to listen without offering advice or telling them what you think they should or should not be doing. Having a chronic illness can be frustrating and sometimes they will need to just vent. If there is something they are or are not doing that is concerning you, think about talking to their doctor about it to see what they think. If the doctor agrees with you, have the doctor talk to your loved one about it. As unfair as it may seem medical advice will mean more coming from their doctor than coming from you. They need you to act as their support system, not as their doctor.
2. DO NOT neglect your needs – Acting as a caregiver to someone who is chronically ill can be all consuming at times. Even if your loved one is feeling better at the moment, you may still be thinking about their illness. I can’t express how important it is for caregivers to take care of themselves. You cannot be helpful to your loved one if you are stressed out, tired, overwhelmed, or upset. Believe me, your loved one would rather you take a break in order to do what you need to do for yourself, whether it be going to the gym or spending an evening with friends, if it is going to help you to take better care of them.
3. DO ask what they need – Sometimes it’s hard to tell what other people need unless you ask. One day they may need something completely different than the next. It is best to talk with your loved one about what their needs are so you are not in the dark.
4. DO educate yourself about their illness – It is really important for you, as well as your loved one, to be educated about their illness. That way, if they are not feeling up to it you can be their advocate. Read books or articles about their illness, talk to others who suffer from the same illness or ask their doctor questions.
5. DO NOT constantly ask how they are doing – Every day is a reminder to your loved one that they are sick. People who have a chronic illness usually do whatever they can to make themselves feel more “normal”, whether it be doing as much as they can when they feel well or just trying not to think about it when they don’t feel so well. By constantly asking how they are doing, you are just giving them another reminder that they are sick. I know this can be difficult for a caregiver because all you want is to hear your loved one say they feel okay. One thing you can do is have a conversation with your loved one about how many times per day, per week, per month it is okay for you to ask them how they are doing. Everyone’s different. Some may not mind it so much. For me, I absolutely hated it when people were constantly asking me how I was doing.

Is there anything else you can think of that should be on the "do" and "do not" list?

Relaxation Techniques and IBD

We all know that stress does not cause IBD, but that stress, along with anxiety and depression, can make symptoms worse. It is really important to find a way to cope with the psychological aspects associated with IBD. One way is to use relaxation techniques to calm your mind and body. So, next time you are feeling stressed, anxious or depressed try one of these...they really can help:

1. Slow breathing: This is probably the simplest thing you can do, but it really does work and the best part…you can do it anywhere. If you are by yourself, close your eyes. Then, relax your body. Take a deep inhale in, slowly counting to four or five. Hold the breath for a second, and then slowly exhale over four or five seconds. Rest for a second, and then repeat. While you are breathing, concentrate either on counting the seconds while you are inhaling and exhaling, or think of something peaceful, like the ocean. This works great if you are by yourself and can lay down and close your eyes, but it also works if you are out in public and start feeling some anxiety because it will make you concentrate on something other than what you are anxious about.
2. Progressive Relaxation: This is a great technique that works best if when you are alone. Start by either lying down or sitting in a comfortable chair and closing your eyes. Take a couple deep breaths. Then, tense the muscles in your feet. Hold the tension for a few seconds and then let it out. Move to your calf muscles. Tense the muscles and hold for a few seconds. Then release. Move to your quadriceps muscles. Tense your quadriceps muscles and hold for a few seconds before you release. You are going to repeat this procedure, moving all the way up your body including your buttocks, hands, lower arms, upper arms, whole arms, abdomen, chest, and facial muscles. After you have finished, tense your whole body, hold for a few seconds and release. Then take a few deep breaths.
3. Guided Imagery: Start by either laying down or sitting in a comfortable chair. Close your eyes and picture yourself in a peaceful, relaxing place. This could be either at the beach, lying in a hammock…anywhere you like. Look at your surroundings. Notice the colors and textures around you. Hear the sounds, smell the ocean or the flowers, feel the sun. Notice any other sensations. Relax and enjoy. The more you do this, the easier it becomes.

There are many other relaxation techniques, but these are the three I like the best. Remember, the less stressed, anxious and depressed you are, the better you will feel. Enjoy and remember they all take practice. I hope these help!

LinkedIn Group

If any of you are on LinkedIn, I started a group yesterday called Crohn's, Colitis & Digestive Disease Support Network. It is for people suffering from digestive diseases, caregivers and health professionals to share stories, advice and support. I know there are other groups like this out there, but I just thought I'd start another one for some place else to go for support!

Here's the link:

http://www.linkedin.com/groups?mostPopular=&gid=3781587

I'd love for you to join!

Depression and Inflammatory Bowel Disease

Understandably, any chronic illness can trigger depression. Nobody wants to deal with the pain, the medications, the doctor visits and/or hospital stays, the everyday struggles, or the uncertainty of what comes next. Having a chronic illness can take a toll on a person both physically and mentally.

When it comes to Inflammatory Bowel Disease, there is an increased risk of anxiety disorders and depression in people who have IBD compared to those who don’t. Now this makes sense right? There is the anxiety of having to know where a bathroom is at all times or when the next flare is going to kick in. In terms of depression, there is so much to deal with when it comes to IBD in your personal and professional life that sometimes it just becomes too much. So what can you do if you have IBD and are feeling depressed?

1. Seek professional help – I know this is something that a lot of people don’t feel comfortable doing, but it really can help. Currently, I counsel people who have a range of digestive disorders and a lot of them tell me that just venting to someone who understands what they are going through helps them to feel better. Seeing a therapist doesn’t mean that you will automatically be put on more medication to treat your depression. Most of the time, talking about your depression with your therapist and jointly coming up with strategies to help you feel better is enough.
2. Join a support group, either in person or online – As I mentioned above, talking with others going through similar situations as you can be a life saver. It really helps to know you are not alone.
3. Get out of the house – Sitting at home thinking about your illness is not going to help you to feel better. Getting out of the house, even if only for a short period of time each day will help to distract you from your sadness. Take up a hobby, something that makes you happy, to keep you distracted.
4. Surround yourself with loved ones – Being alone when you are feeling depressed is only going to make things worse. Family and friends are there to support you. Talk to them about ways they can help, whether it be helping with small chores, making you laugh, or not talking about your illness at all!
5. Remember that you are not always going to feel this way – When you are living with any chronic illness, some days are going to be worse than others. But your symptoms will improve, given time and treatment. It’s important not to get stuck in a rut of negative thinking. Instead, when you are feeling down, think of some of the things you would like to do when you start feeling better. Having ideas of positive things you want to accomplish will give you something to look forward to.

Remember, as hard as it is, it’s important to stay positive when you are feeling down. A negative outlook is only going to exacerbate your symptoms and make it harder for you to get well.

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...