How To Combat The "Why Me's"

If you have a chronic illness or suffer from chronic pain, you have no doubt asked yourself “why me?” at least once…or more likely, a hundred times. I know I have. This question usually comes when you are not feeling well, when things aren’t going as you planned, or when you are in pain. It is something that is hard to move past. It can be frustrating and all-consuming at times. It can be depressing and can provoke anxiety. Here are a few tips that I hope will help.

1. Learn to accept that you may never get an answer. For the majority of us, there is no answer to “why me?”. Unfortunately sometimes things just happen. Acceptance doesn’t necessarily mean “it’s okay”. I’m not asking you to say that it is okay that you have an illness or pain. When I talk about acceptance, I mean being able to make necessary adjustments in your life, learning your new normal, and learning that despite your chronic illness or pain you can still be happy. Learning to accept that you may never get an answer to why this happened to you will be a process. It is not something that will happen overnight. You may want to resist it and that’s alright. It is not fair that this happened to you but with some hard work, dedication and a little reorganization of priorities, it is possible to be happy and to accept not having an answer to “why me?”

2. Find meaning. Ask yourself what good could come out of your situation. I guarantee that if you are open to that question, if you take the time to think about it, and if you are honest with yourself, you will likely come up with at least one positive thing that has come out of all the bad. For me, the meaning in my situation is that I am able to counsel others with chronic illness and chronic pain. It is what I love to do and I have been able to take my own experiences and knowledge and help others. For you it doesn’t have to be something as big as a career decision. It may be something as simple as the fact that you now have more compassion for others, you don’t judge people as quickly as you used to, or that your illness or pain has taught you to appreciate the small things in life.

3. Find a passion for something. Try to focus your attention on something other than “why me?”. Find a hobby or a passion that will make you happy and take your mind off of “why me?”. It is okay if the question comes into your mind once in a while. When it is constant or interrupts your quality of life, your focus, or your happiness, that is a problem. Finding something that brings you joy will help you to cope.

4. Find support. You are not alone. As I stated above, the majority of us with a chronic illness or chronic pain have asked ourselves “why me?”. If you find that you are having difficulty with this question, find support, either with friends, family, a support group, or a therapist. Talking about what you are thinking and feeling can help greatly.

My Invisible Illness is Real

Most people who have an invisible illness (a chronic medical condition that shows no outward signs) have experienced these words at one point and time: "But you don't look sick." These words can be extremely frustrating. I often ask my clients, "What is the most difficult thing for you about having (Crohn's Disease, ulcerative colitis, IBS…)?" I can't tell you how many times I have heard the answers "It's hard to talk to people about what I'm going through because they tell me I don't look sick", or "My family doesn't always believe how bad I feel because I don't look sick", or "I've been told it's all in my head". I could go on. This is one of the difficulties those of us with chronic illnesses need to learn to overcome. The idea that people don't believe us because they cannot see our illness like they can see someone in a wheelchair or a like they can hear a chronic cough can feel isolating and depressing. Sometimes it can make us feel like maybe it really is in our heads. Maybe we aren't really as sick as we think. Instead of giving in to this, we need to fight back! Understand that these people aren't saying these things to be insensitive. They just don't get it. So educate them! Explaining to them what you are going through and why you don't look sick will not only educate them on something they are unfamiliar with, it can be empowering for you too. Also, trust yourself. You know how you feel. You know your illness. You know that it is not in your head. It is real.

The Psychological Epidemic in Patients with Gastrointestinal Diseases: Help is Needed for Patients Suffering from Suicidal Thoughts, Depression, Stress and Anxiety

I don't know how many of you have read about the suicide of Aaron Swartz. While their may have been many factors that lead to his decision to take his life, many of the articles written about him mentioned the fact that he had ulcerative colitis and that this may have contributed to his depression. After I read some of these articles I couldn't stop thinking about it. I decided to put my thoughts into words. Below is the link to an article I wrote about the psychological problems many people with gastrointestinal problems face. While suicide is a drastic measure, it is not unheard of.

If you cannot open the link directly, please copy and paste it into your browser.

http://voices.yahoo.com/the-psychological-epidemic-patients-gastrointestinal-12196127.html?cat=5

Irritable Bowel Syndrome and Inflammatory Bowel Disease: What's the Difference and Which One Do I Have?

Many people get confused between the terms Irritable Bowel Syndrome (IBS) and Inflammatory Bowel Disease (IBD), and understandably so. Many of the symptoms of these diseases are similar and, in fact, may people who have IBD are first diagnosed with IBS before receiving the correct diagnosis. So, what are the differences?

Main Differences between IBS and IBD

The biggest difference between IBS and IBD is that IBS is a syndrome, not a disease. IBS does not lead to colon cancer and it does not cause bleeding. IBD, on the other hand, is a disease, can lead to colon cancer and bleeding is one of the main symptoms.

IBD includes a group of diseases in the gastrointestinal tract. The two main diseases are Crohn's disease and ulcerative colitis. Crohn's disease can affect the entire gastrointestinal tract, from the mouth all the way down to the anus. Ulcerative colitis is limited to the rectum and large intestine (colon).

Symptom Differences between IBS and IBD

General symptoms of IBS include:

•Abdominal pain
•Bloating
•Cramping
•Diarrhea or constipation

For people with IBD, all of the above symptoms apply in addition to:

•Rectal bleeding
•Fever
•Weight loss
•Inflammation/ulcers of the gastrointestinal tract seen during colonoscopy and/or endoscopy

Treatment Differences

The difference in the treatment of IBS and IBD is that with IBS, the focus of the treatment is on the symptoms. Anti-diarrhea medication is given if diarrhea is the main symptom. Diet change may be necessary if offending foods are causing the problem. Changes in stressful activities may be required if stress is a culprit.

When the diagnosis is IBD, treatment focuses on controlling the inflammation that is causing the symptoms. Anti-inflammatory medications or immunosuppressant medications are often used. In severe cases, surgery may be needed.

Which One Do I Have?

To confirm your diagnosis, it is extremely important to visit your doctor. Your doctor will take note of your symptoms and perform certain tests and/or procedures in order to make the correct diagnosis. Keep a journal of your symptoms and bring it to your doctor to make sure you aren't leaving anything out. If you think certain foods are causing a problem, keep a food journal of the offending food and the symptoms created by eating that food and bring that along as well.

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.

Website!!

I now have a website that focuses on Inflammatory Bowel Disease and the psychological effects associated with it. Check it out!!


www.ccddsupportnetwork.com

NSAIDS and IBD

While it is said that there is no “cause” of IBD, it is known that there are triggers that will exacerbate symptoms. Though I will never know for sure, I am convinced that my genetics and my long-term use of NSAIDS (non-steroidal anti-inflammatory drugs) were the trigger to my ulcerative colitis.

When I was 18-months old, I was diagnosed with juvenile rheumatoid arthritis. For most of my life, except for a few years while I was in remission, I was taking NSAIDS daily, twice per day. While at the time I didn’t think there was anything wrong with that, I now want to know what the heck my doctors were thinking keeping me on NSAIDS for so long!! I mean, it says right on the bottle that NSAID use can cause gastrointestinal effects, gastrointestinal bleeding and ulcers! I could kick myself for not paying more attention to those warnings but when you’re young you think you are invincible and that nothing bad could ever happen to you. I understand the whole risks versus benefits thing, but you would think that risks like that would be paid a little more attention.

Another reason I think NSAIDS were a trigger for my IBD is because now that I have a J-pouch I am told to stay away from NSAIDS…for obvious reasons…because they can cause gastrointestinal problems! So, why was is okay for me to take NSAIDS for so many years when I had a colon but now that I don’t have a colon I need to avoid them like the plague?

I get that there is no use in dwelling on these facts. My only wish is that doctors who have patients on long-term NSAID use would consider the fact that there are side effects that could affect their patients for the rest of their lives. And I am sure there are many doctors who do. My intention is not to bash doctors. I just want those of you who may be taking NSAIDS to be aware of the side effects, educate yourself about the medications you are on, and talk to your doctors about the possibility of an alternative.

Anxiety and Inflammatory Bowel Disease: How to Cope

Anxiety...if you have Inflammatory Bowel Disease (IBD) you probably know this word very well. It's the feeling of having to worry about whether the bathrooms will be accessible everywhere you go. It's the feeling of not wanting to leave the house for fear of having an accident in public. It's the feeling of urgency that comes right before you have to run to the bathroom. It's the feeling of wondering when the next flare is going to rear its ugly head. Feelings of anxiety are hard to get away from when you have IBD, especially during a flare. Here are a few tips to help reduce that anxiety...even if just a little bit.

Check out the rest of my article at...

http://www.associatedcontent.com/article/8116483/anxiety_and_inflammatory_bowel_disease.html

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.

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...