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.


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...


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!
  • The Mind-Gut Connection and IBD

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

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

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

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

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

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

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

    Tips for Caregivers

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

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

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

    Relaxation Techniques and IBD

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

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

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

    LinkedIn Group

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

    Here's the link:


    I'd love for you to join!

    Depression and Inflammatory Bowel Disease

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

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

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

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

    Appreciating Life

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

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