J-Pouch Surgery and Getting Pregnant

When I was told I would only have an 80-85% chance of conceiving on my own after the J-pouch surgeries, I was devastated. I cried for three days. My husband and I had only been married for six months and we both wanted children. I couldn’t believe this was happening to me and questioned what I had done to deserve this.

It took me the three days of crying to come to terms with the fact that I didn’t have any other choice. I was so sick that it was either I had these surgeries or I died. I had to realize that whatever was in store for me I could handle. Whether or not I could conceive on my own or through in vitro fertilization, I was going to have a child. The most important thing was to get healthy first.

I think that for most women facing this surgery, the idea that they may not be able to have children without help is one of the most difficult parts. Also, the decision of whether or not to try to get pregnant with the ostomy before the final take down surgery is a big one as well.

It is important to go into this situation as informed as you can. Know your options. Talk to other women who have tried getting pregnant after the surgeries and find out what their experience was. Talk to your partner about what you will do if you are not able to get pregnant on your own so you are prepared. As scary as the statistics are, it doesn’t mean it’s not possible. Our bodies are made to bounce back. It is important to remain positive and remain hopeful.

Just to prove that it is possible, here is a picture of my beautiful 16 week old baby boy.

Giving Thanks

Since it’s that time of year I thought I should write about thankfulness. When you have a chronic illness, sometimes it’s hard to see past the negatives and really take a look at what there is in your life to be thankful for. For me, when I was really sick with ulcerative colitis, it was hard for me to think of anything to be thankful for. I just couldn’t understand why this was happening to me and I began to look at life through a negative lens. I was so sick, I had to put my life on hold to have major surgeries, I had to wear an ostomy bag, I was in terrible pain, I had complications from the surgeries…nothing seemed to be going right. Now that I am healthy again, I look back on my whole experience and realize that I had, and still have, a whole lot to be thankful for. I have an amazing husband, family, and friends who were there for me throughout everything and I have fantastic doctors who gave me my life back.

Although my experience was a rough one, I remember during one of my many hospital visits I was staying on the cancer floor. Every day I could hear the patient across from me coughing and vomiting because of the chemotherapy. This went on pretty much nonstop. I remember thinking that as bad as my experience was it could be worse and that there were people who had it much harder than I did. It put things in perspective.

Having a chronic illness can be an eye-opening experience if you let it. It can make you more empathetic to others who have an illness. It can teach you to appreciate what you have, even the little things, like going outside for a walk, eating a good meal, or spending a night out with friends. It can help you to realize that you are strong and can deal with anything. It helps you to focus on the things in your life that really matter. So, I urge you to try and think about the things in your life that you are grateful for, despite your chronic illness and despite how hard it can be sometimes.

Rollercoaster of Emotions

Last Friday I had my annual flex sigmoidoscopy to take a look at my J-pouch. After a whole year of doing fantastic and feeling great I went into this appointment a little nervous but very confident. So after two hours of waiting (no fault of my doctor’s but still very annoying) my nerves kept building. Throughout the exam everything was looking great, until the very end when my doctor found a small piece toward the top of the pouch that was a little inflamed with a small ulcer. One ulcer. Upon seeing that my mind started racing and I started freaking out inside but remained calm so my doctor wouldn’t think I was a crazy person. After he took a biopsy and I got my pants back on, I asked him “what could it be?”, “is it Crohn’s?”, “when will the results be back?” After giving me a smile and trying to calm me down a bit he told me that he didn’t know what it was, it could possibly be Crohn’s but he didn’t think so and not to worry (REALLY?!), and that the biopsy results should be back within a week or two.


So since Friday morning I’ve been able to think of nothing else. I’m trying to remain positive, but having that camera up my butt again and seeing an ulcer again has really played mind games with me. It’s brought back that whole flood of emotions that I felt when I was sick with UC and while I was going through my surgeries. The thing I’ve realized is that those emotions and these experiences will never go away. Even if the results come back and it’s not Crohn’s , this is something I’m going to have to go through every year when I have that exam. The nerves beforehand and the praying to God that nothing shows up during the exam. So it makes me think. For those of us who have had J-pouch surgery as a “cure” for UC, is it really a cure? Possibly it is a cure for the actual physical ulcerative colitis (although not always for those who find out after that they really had Crohn’s all along, or the small percentage who have complications after the surgeries). But emotionally, having these surgeries is definitely not a complete cure. It is something that will always be with us. Those emotions, those memories, that fear. I’m not saying I wouldn’t have had the surgeries. Not that I had a choice, but if I had, I still would choose to have them and I would still recommend them to anyone. They saved my life and gave me a better quality of life. For that I’m definitely grateful. I guess I’ve just realized that for most people it doesn’t end once the surgeries are over. It’s a process. Which is why I think it is so important to take care of yourself both physically and psychologically, during the illness as well as after. I think it’s also the reason I’m so passionate about counseling people with IBD…because I GET IT. And you can’t get all the emotions and fears unless you’ve been through it. So for now, I’m going to do some of the things I tell my clients to do…try and remain positive, deal with my emotions, and since I’m feeling good, enjoy life…and pray that the ulcer is nothing.

J-Pouch Surgery Basics

I know the possibility of surgery is really scary for some people. It definitely was for me. I recently heard from another J-pouch buddy of mine that before she had surgery some people were actually trying to talk her out of it and were telling her that she was weak for having the surgeries. When I heard this I absolutely couldn’t believe it! I know for a lot of people who have the J-pouch surgeries, myself included, it is not an option. If I had not had these surgeries I would have died, plain and simple. Because there is so much misinformation out there and because of the negative ideas that some people have about these surgeries, I wanted to share some information about the J-pouch surgeries.

J-pouch surgery is an option for people with ulcerative colitis as well as for people with FAP. For people with ulcerative colitis, it is typically done when all other medical options have failed, which was the case for me. These surgeries can be done in one, two, or three different surgeries, usually depending on how sick the patient is. In my case, I had three surgeries because I was so sick and malnourished. The first surgery was simply to remove my colon. After my colon was removed, I had a temporary ileostomy, which is a small opening in the abdomen where a piece of small intestine sticks out in order to remove waste into a bag attached to the abdomen. Three months later was surgery number two in which the J-pouch was formed out of small intestine. The J-pouch’s job is to essentially act as a “new colon”. After this surgery, I still had the ileostomy. The third surgery is called the “takedown” and consists of removing the ileostomy and attaching that piece of intestine to the newly formed J-pouch. After this surgery the person will be able to go to the bathroom normally again.

After takedown surgery, the patient will most likely have to go to the bathroom several times per day until their body adjusts to the J-pouch. Some people say that it’s almost like having ulcerative colitis again at first. It does get better though! After the body adjusts, which can take up to one year but is usually much sooner, the average person uses the bathroom around six times per day.

What’s hard about these surgeries is that everyone is different. One person may have a lot of problems and go to the bathroom a lot each day, whereas another person may do great and only go to the bathroom three times every day. You just never know. I think maybe that’s what scares people so much about these surgeries.

In my opinion, J-pouch surgery is a fantastic option for people with ulcerative colitis. Yes, as with any surgery, there are risks and things that can go wrong (obstructions, pouchitis, cuffitis…) and there’s always a risk that the J-pouch will not work as it should. But these risks are rare and for most people, life with a J-pouch is a million times better than life with UC.

Life after J-pouch surgery…for most people, including myself, is great! There are things that are a little different, like going to the bathroom more often, but they are completely manageable and although there are more bathroom trips, unlike with UC you can hold it until you can find a bathroom. For me, there is nothing I can’t eat and nothing I can’t do.

I want people to know that J-pouch surgery is not the end of the world. If you have to have surgery you are not weak and you did not do anything wrong. It is possible to live a normal life and a good life after these surgeries. For more information you can visit my website at www.ccddsupportnetwork.com.

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!

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!

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!

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...