My Invisible Illness is Real

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

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.

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!

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!