The Five Stages of Grief for Chronic Illness or Chronic Pain

I’m sure some of you have heard of the five stages of grief developed by Elizabeth Kübler-Ross. Kübler-Ross developed these stages to explain the process individuals go through who are near death. But did you know that these five stages can be used to explain the process people go through when diagnosed with a chronic illness or chronic pain? Below, I will explain how these stages relate to those of us with chronic illness or chronic pain. Along with the “depression” stage, I have added anxiety because I think this is common in most of us who experience a chronic illness or chronic pain. As you read these, think about which stage you may currently be in. Remember, these stages are not linear. You can jump back and forth between stages depending on where you are at in your diagnosis.

Denial

In this stage, the world becomes meaningless and overwhelming. Life makes no sense. We are in a state of shock and denial. We wonder how our life is going to change and how we are going to live with those changes. Denial and shock help us to cope and make survival possible.

This stage can be dangerous for people with chronic illness/pain because at this stage if they are in denial about their illness or pain, they may not take the necessary steps to get themselves the treatment they need.

Example: “It’s not a big deal, it will go away”

 Anger

Anger is a necessary stage of the healing process. Be willing to feel your anger, even though it may seem endless. The more you truly feel it, the more it will begin to dissipate and the more you will heal. There are many other emotions under the anger and you will get to them in time, but anger is the emotion we are most used to managing. Your anger has no limits and it may extend not only to your friends, doctors, your family, yourself and your loved ones.

Example: “This isn’t fair! I didn’t do anything to deserve this!”

 Bargaining

This is the stage where we want more than anything for life to be what it once was. We become entrenched in “if only” or “what if” statements. Guilt is often bargaining’s companion. The “if only’s” cause us to find fault in ourselves and what we “think” we could have done differently. We may even bargain with the pain or illness because we would do anything not to feel it anymore.

Example: “Please just don’t let this ruin my life”.

 Depression (and/or Anxiety)

After bargaining, our attention moves squarely into the present. Empty feelings present themselves, and grief enters our lives on a deeper level, deeper than we ever imagined. This depressive stage feels as though it will last forever. It is important to understand that this depression is not a sign of mental illness. It is the appropriate response to a loss. We withdraw from life, left in a fog of intense sadness, wondering, perhaps, if there is any point in going on. Depression after a loss is too often seen as unnatural: a state to be fixed, something to snap out of. Being diagnosed with a chronic illness or experiencing chronic pain is a loss – a loss of the life you once had. Depression is one of the many necessary steps along the way toward healing.

Having a chronic illness or chronic pain also may bring up feelings of anxiety; anxiety about what the future holds, anxiety about not being able to live up to expectations now that this illness or pain is present, anxiety about social situations, anxiety about medical bills, etc.

Example: “I’m going to be in pain forever so why even bother”.

 Acceptance

Acceptance is often confused with the notion of being “all right” or “OK” with what has happened. This is not the case. Many people don’t ever feel OK or all right about having to live with pain or an illness for the rest of their lives. This stage is about accepting the reality of your situation and recognizing that this new reality is the permanent reality. We will never like this reality or make it OK, but eventually we accept it. We learn to live life with it. It is the new norm with which we must learn to live. We must make adaptations and alterations to our lives. We must find new things that bring us joy.

Example: “I’m not going to let this define me. I will learn to deal with this the best I can”.

10 Ways to Manage Stress with a Chronic Illness

1. Relaxation techniques – Relaxation techniques are very helpful for relaxing your mind and body. The simplest relaxation technique is deep breathing. To do this, sit in a chair or on a couch with your feet planted on the floor. Close your eyes if you would like. Begin by taking a deep breath to the count of 3 or 4, inhaling through your nose. Pause for a second and then exhale through your mouth to the count of four. While you are breathing in and out, focus on your breath and on counting. Repeat this until you feel relaxed.

2. Evaluate your priorities – We tend to have a lot going on in our lives with work, school, relationships, kids, etc. A lot of the time, our health tends to take a backseat to these other priorities. When you have a chronic illness, it is really important to make your health a top priority. Sometimes it takes evaluating the priorities in your life and figuring out how you can rearrange things, where you can ask for help, and what you can hold off on in order to make sure you are taking care of your health.

3. Participate in at least two enjoyable activities per week – It’s really easy to start feeling depressed and anxious when you have a chronic illness. To help avoid this it is important to do things you enjoy. Make it a goal to do two things you enjoy per week. That can be anything, ranging from reading a good book to taking a walk on the beach.

4. Make lists – Make a list of the things you absolutely have to do on a certain day and a list of the things you would like to do but don’t necessarily have to do. Focus on doing the things you have to do. If there is time and you have the energy, then you can start on the list of things you would like to do.

5. Enjoy the days when you feel good – Whether there are many of these days or they are far and few between, enjoy the days when you feel good and be grateful for them. It’s really easy to focus on the negative things about having a chronic illness. Instead of doing that, focus on what you can do when you feel good.

6. Be proactive with your medical treatment – Make sure you stay on top of doctor appointments and medications. That way you won’t fall behind, which will only make you more stressed out. Plan appointments far ahead of time so that you make sure to get a day and time that is convenient for you. Order prescriptions early so you aren’t rushing to the pharmacy the day you run out of medication. Make sure to report new symptoms to your doctor as soon as possible so that something can be done about it. You see where I am going with this…

7. Find social support – Whether it be with family or friends, or a support group for people with chronic illness, having support is extremely important for managing stress.

8. Exercise – Do what you can when it comes to exercise. Swimming, yoga, or even taking a short walk can do a lot for stress management. If you are having a difficult time thinking of exercises you can do, talk to your doctor and brainstorm together.

9. Make time for yourself – With everything going on in our daily lives, it is important to schedule in some “me” time. Even if it’s only a short amount of time per day.

10. Try not to put so much focus on the things that are out of your control – We only have control over so much. We do not have control over the fact that we have a chronic illness. But we do have control over what we are going to do about it. We can choose to let it affect us negatively every day, or we can choose to learn to make alterations and accept it. We can choose whether or not we are going to be on top of our medical treatment so we can get our illness under control as much as possible. We can choose to focus on the negative things about our illness, or we can choose to try and find a positive. We can let our illness become who we are or we can choose to let it be something we have.

Why Don't Medical Professionals Know What a J-Pouch Is?

It’s amazing to me how many medical professionals have absolutely no clue what a J-pouch is. I can’t tell you how many times I’ve had a doctor or nurse ask me to see my pouch. Really?!? I don’t know why it surprises me anymore but it still does. I don’t know what it’s going to take to educate these people. Shouldn’t they know?

A few days ago I had a pouch endoscopy because of the prolapse of my intestine into my pouch that happened a couple weeks ago. Because my surgeon was out of town while it happened (story of my life) he was unable to take a look while I was at the hospital so he wanted to take a peek to see if he could see anything that may have caused the prolapse. I went to the GI LAB at the hospital to have this procedure done. Did you happen to notice that I capitalized GI LAB? While I was there, I once again had a nurse ask if she could see my pouch…at a GI lab!! This amazed me. I again had to explain that it is an internal pouch and you can’t see it. Luckily, shortly after she asked me that question she gave me a hefty dose of Versed which saved her from a slap in the face, just for asking that question. Just kidding, but really, it kind of annoyed me. Anyway, the good news is that my surgeon said my pouch looked normal and that he couldn’t see anything that would have caused the prolapse. I guess now it’s just a wait and see game. If it happens again, we’ll deal with it then.

All of these experiences with these doctors and nurses make me wonder how or if we can educate the medical world about J-pouches so we aren’t constantly being asked about it. Any ideas?

Accepting Your Chronic Illness

ac•cep•tance:

1. The act of enduring without protest or reaction.
2. The act of recognizing as true.

One of the hardest things to do when you have a chronic illness is to accept your situation. It is something that usually takes time and a lot of hard work to achieve. Why is it so hard to accept having a chronic illness? There are many reasons. Having a chronic illness may mean a complete change in lifestyle. It may mean taking several medications daily. It may mean the inability to do things you once enjoyed. Having a chronic illness may mean not knowing when you are going to feel good and when you are going to feel bad. There are a lot of unanswered questions that come along with having a chronic illness: “Why me?”, “What did I do to deserve this?”, “What is in store for my future?”.

When I talk about acceptance with my clients, I don’t mean that it is okay that you have a chronic illness. What I mean by “acceptance” is recognizing that your situation is long-lasting and making alterations in your life that will enable you to live the happiest, fullest life possible. You can’t avoid your illness but you can learn to live with it without struggling. It also means the ability not to let your illness define who you are. Your illness is something you have, it is not who you are.

So, how do you begin the process of accepting your chronic illness? Step one is acknowledging the fact that you may never get the answers to all of your questions. You may never find out why this happened to you or if there was something you could have done to prevent it. Sometimes it just is. Asking why can leave you feeling helpless. Step two is making alterations in your life. For example, if exercise is something you really enjoyed before you got diagnosed and you are now unable to exercise to the extent you could before, think of ways in which you are still able to exercise. Maybe yoga would be a better option, or if running is too strenuous now, take long walks instead. The third step of moving toward acceptance is to find meaning in your situation. You may never find the answer to why this happened to you. Instead of focusing on that aspect of your illness or on the negative parts of your illness, find a sense of meaning in your situation. Maybe that means leading a support group for others who have the same diagnosis as you do, or volunteering at a hospital, or maybe you have decided that you want to become a doctor because of your experiences. Whatever that meaning is for you, it is important to find something positive to focus on. Lastly, make it a goal to participate in at least one enjoyable activity per week. Having a chronic illness can be life changing. In order to avoid depression and in order to learn to live with your illness, it is important to continue to do activities you enjoy. Maintaining a sense of normalcy in as many areas as you can while making alterations in those areas that are necessary will help you to feel more in control of your life.

Remember, having a chronic illness does not have to be solely a negative experience. Along with the negative feelings and experiences derived from triumphant feelings and strength that come with overcoming obstacles. With each success comes the confidence that you're able to live a full, rewarding life and maybe even a more meaningful life than if you hadn't been diagnosed with your illness.

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.

Proving Everyone Wrong...Including Myself

Having a chronic illness comes with a lot of stigmas…you’re weak, you’re fragile, you can’t…

I was diagnosed with rheumatoid arthritis when I was 18 months old. Although I played several sports when I was young, for a long time I had the mindset of “I can’t”, especially when it involved being physical. That mindset stayed with me as I grew older and while I have always loved working out at the gym, I would stay away from things I thought I couldn’t do, like running or certain leg exercises that would hurt my arthritic knee.

After I was diagnosed with ulcerative colitis, and especially after my four surgeries, I started noticing that other people thought that I “couldn’t” as well. I started to see that they had this impression of me that because of everything I had gone through I was fragile. I know of course that this mindset of theirs wasn’t intentional and it wasn’t meant to make me feel bad but it did. I have never seen myself as a weak person and I didn’t want others to think of me that way. I noticed comments people would make including that I could sit out while the others did something physical, or asking me what I actually did when I worked out and then being surprised at the answer because for some reason they didn’t think I actually worked out when I went to the gym.

Lately all of this has been bugging me more and more so I’ve decided to do something about it, not only to prove others wrong, but to prove to myself that I can do it. So, last weekend I did my first 5k mud run and let me tell you, it was a blast! Sure, my arthritic knee hurt while I was training for it. I was one of the slowest on our team. But I did every obstacle, ran/walked the whole thing, and I finished. I know for some people a 5k is simple. But for me it was a challenge. When I told some people I was doing a mud run, I know they were surprised and didn’t think I’d be able to do it. But I proved them wrong. And I’m not stopping there. I’m signed up for another 5k in three weeks and I’m determined to finish it even if it means walking most of it. And I’m not naïve. I know I probably shouldn’t be doing these runs because it’s not good for my knee (and I know my rheumatologist would have a fit if he knew what I was doing) but I’m determined at least to finish the 5k that’s coming up. After that, maybe I’ll think of something else to do to challenge myself and to keep proving to myself and others that I can. There are so many things I’d like to do that I never thought I could before: Rock climbing, biking, long hikes…Who knows what it will be but I know now that as long as I take care of myself and listen to my body, my possibilities are endless.

The Big 3-0

Tomorrow’s my birthday…the big 3-0 and I can’t help being depressed about it. I know it probably sounds silly to most of you because 30 is still young, but it’s just one of those feelings I can’t help. All of my friends and family pretty much think I’m being ridiculous. I’ve been told “Just be happy you’re alive”, “It’s just a number”, “At least you still look young”, blah, blah, but here’s the thing…I hardly ever get angry or pity myself about what I have been through with my IBD and my four surgeries. I’ve tried to make the best of it and think I’ve done a pretty good job at it. Sure while I was going through my surgeries, particularly surgeries number 1 and 2, there were times I felt depressed and thought that what I was going through was completely unfair. But other than that I think I’ve been pretty good. During the literally hundreds of blood tests, I never complained. When I had to go back to the hospital after my takedown, have two blood transfusions and spend 4 days in ICU because I was severely anemic, I didn’t complain. When I had to have my fourth surgery because my J-pouch twisted, I took it in stride. So the reason I’m so unhappy about turning 30 is because I feel like ulcerative colitis stole almost 3 years of my life. During those 3 years I had thought I was going to build my career and have a baby. Now because of UC, I’m farther behind in my career than I had wanted to be and I don’t even know if I’m going to be able to ever have kids. I realize that life doesn’t always happen the way we plan it. But aren’t I allowed to be angry for at least a couple days? So to everyone who has had to listen to me complain about turning 30, it’s not because of the number, it’s because I feel like a few years of my life have been stolen and I’m just a little bit pissed off about it. I’ll be fine by the weekend :-)

8 Ways to Combat Stress During the Holidays



With the holidays around the corner, times might be starting to get a little stressful. There’s last minute gift shopping, menu planning, travel plans, etc. We all know that stress can make symptoms of IBD worse, so I wanted to give you a few ways to try and alleviate some stress this holiday season.

1. Make lists – Before you go shopping, try and figure out what it is that you want to buy the people you have left. Write down their names and the gift you are planning on buying so you know exactly who you have left to buy for and where you need to go. If you’re not sure yet what to buy, at least write down their name so you don’t need to think about it later. If you are cooking the holiday dinner, write out separate lists for what dishes you are planning to make and ingredients you need to get. While you are cooking, cross off each dish after you complete it so you know what you have left to do. If you are traveling, make lists for what you have left to do to plan your trip, things you need to pack, etc. Being organized will reduce your stress level tremendously.
2. Have you been invited to a ton of holiday parties? Are you wondering how you are going to attend them all? Don’t worry about attending everything! Prioritize the parties you really want to attend and tell the others you are sorry you can’t make it. Everyone knows this is a busy time of year so they will most likely understand if you can’t come this year.
3. Take time out for yourself – In order to reduce stress during the holidays, take some time out for yourself, even if it’s only for a few minutes per day. Read a book you enjoy, take a yoga class, watch your favorite TV show…whatever it is that helps you to relax.
4. Make a financial budget and stick to it – Most people tend to over spend during the holidays which then can create more stress once you get the credit card bill. Come up with a reasonable budget for yourself to spend on gifts, decorations, food, etc. and then stick as close to it as you can.
5. Delegate – If you need help shopping for presents, cooking, decorating, or cleaning, ask for help! You don’t need to do everything yourself!
6. Keep your regular routine – During this time of year, things are so hectic that it’s hard to get everything in. In order to reduce stress on yourself and your family, try to stick to your regular routine as much as possible, at least during the week. Have regular meal times, stick to your regular work-out schedule, and go to bed at the same time you usually do.
7. Make sure to keep your doctor’s appointments and take your medications at your regular times – Sometimes when we are so busy, it is easy to cancel doctor’s appointments and forget medications but doing so may exacerbate symptoms.
8. Enjoy the time you have off from work and enjoy the time you are spending with your family.

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.

PTSD After J-Pouch Surgery

I have come across so many people, clients and others, who have experienced PTSD after the J-pouch surgeries that I felt it was time to finally write about it. This is not intended to scare anyone who may be facing these surgeries. I think that in these circumstances it is best to be prepared from all angles about what may or may not happen before, during and after these surgeries. Being prepared is the best defense because then you can deal with it before it becomes a problem.

When people think about PTSD, the first thing that usually pops into their heads is that it is something that war veteran’s experience. But really take a look at what PTSD stands for: Post-Traumatic Stress Disorder. So it can happen after experiencing any kind of traumatic event…and from my own experiences and from those of the many people I’ve talked to who have had these surgeries, they can definitely be traumatic, especially if you’re not well prepared. Unfortunately, PTSD, depression, anxiety, and all the other crazy emotions that a lot of people feel during and after these surgeries is not something that any doctors to my knowledge talk about…at all. They only talk about the medical side of it, which I get because they’re medical doctors, but at least a mention of the potential emotions that one might experience would be helpful!

So what does this PTSD look like? Mostly, it’s the anxiety and fear of getting sick again and having to go through anything remotely similar to what has already been experienced. I wouldn’t say that I’ve had full on PTSD after my surgeries, but I definitely experience some parts of it. The fear of getting sick again, having to go back to the hospital again or going through another surgery can be terrifying sometimes. Also, being away from my doctors can be really scary. I recently got back from an almost 2 week trip to Europe. The anxiety and fear of something going wrong while I was away and not being able to see my doctors was so overwhelming that I almost didn’t want to go. Another symptom of PTSD after these surgeries is flashbacks. A lot of people that I’ve talked to say that sometimes out of the blue they will have flashbacks of a certain time while in the hospital or during recovery and that it brings back all the emotions they were feeling at the time. Sometimes, just thinking back on everything you have gone through can be emotionally draining. For most people, the period of time from when they were sick enough to need the surgeries until after the takedown is kind of like a “do or die” situation. Nothing else matters during that time other than getting through it and getting healthy again. So for a lot of people, dealing with emotions at that time is just not an option. They just need to be focused on getting through it. So after the takedown, when things are finally starting to get a little bit back to normal, these emotions can come on like a flood…uncontrollable and overwhelming.

So for those of you who have experienced PTSD or are experiencing it after your surgeries know that you are not alone and that this is completely normal. The best thing to do is to find someone to talk to about all the feelings you are experiencing. That way you can find a way to cope with your feelings, accept what has happened, and live your life again. For those of you who may be facing these surgeries, please don’t let this scare you. It is better to be prepared going into the surgeries so that you are better equipped to deal with these emotions if they arise. Even after all the things I’ve dealt with during and after my surgeries, I would still recommend the J-pouch surgeries to anyone. They were life-saving and they have only made me stronger.

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.

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.

Mourning After J-Pouch Surgery

I have been asked quite a few times "Dr. Martin, why is it that I feel so sad after my takedown surgery? Aren't I supposed to be happy? Is this normal?" My answer...Yes, it is completely normal. I wondered the same thing after my takedown. When I went in for my surgery, I felt so relieved. I thought "Finally I'm going to be done. I can get on with my life, be happy again, and not think about this anymore." About a month later, I started feeling sad and angry and I didn't know why. I finally realized that I was feeling this way because of all of the trauma I had been through in the last year. I mean, being incredibly ill, spending more time in the hospital than out, having three major surgeries, and losing an organ is a lot to deal with! I realized that I was in what I call my "mourning period" and that I just needed to give myself time to deal with everything that I had been through.

So for those of you who may be experiencing the same emotions after your surgeries...you are not alone. You are not crazy for feeling this way. It will get better. Give yourself time to deal with what you have been through. If you feel it would help to talk to someone about what you are going through, do so. Find a support group in your area or a therapist who gets what you are going through. Just remember that this is part of the process and that you will be happy and able to live life again. Sometimes it just takes a little longer than expected.

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

Travel Tips for IBDer's

I recently went on a vacation to Mexico. It was only the second time I had travelled since my J-pouch surgeries and the first time out of the country since my surgeries and boy was I nervous! I've learned a lot about travelling with my new digestive system so I thought I'd share some tips:

  • Eat only foods you know agree with you. When you are away from home it is not the time to experiment.
  • Keep a piece of paper with a list of your medications and your doctors names and phone numbers in your wallet. That way, in case something does happen everything will be in one spot.
  • Be sure to keep yourself hydrated. Stock your room full of bottled water and Gatorade.
  • If you have an ostomy, take PLENTY of extra supplies. It’s better to have too much rather than not enough.
  • Take a break when you need to. If you are on a trip where you are doing a lot of activities, don’t feel like you need to constantly be on the go with everyone else. Listen to your body and take a rest if necessary.
  • If you are going to a foreign country and you have had surgeries, consider taking your surgical notes with you…just in case.
  • Double check that you have packed all your medications and bring them in your carry-on luggage in case your checked bags get lost. You don’t want to be without your meds!
  • If you have a J-pouch, ask your doctor for a prescription for Cipro and/or Flagyl and bring them with you even if you’re not prone to pouchitis…it’s better to be safe than sorry.
  • If flying with a J-pouch, I find it helpful to eat light the day of the flight and go to the bathroom right before you board.
  • If you are going to a foreign country always have change in your wallet. Some countries charge a small amount to use the bathrooms.
  • Know the bathroom situation in every restaurant, museum, store, etc. you go to.
  • Try to have fun and not to worry!