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.

Cosmopolitan Magazine

Recently I had the pleasure of sharing my story with one of the editors at Cosmopolitan Magazine. Here is the link to the story:


http://www.cosmopolitan.com/advice/health/jennifer-kaplan-ulcerative-colitis-story?click=cos_latest

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.

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.

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.