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.

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!

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?