In our continuing series of patient stories, we would like to introduce you to Joshua L, diagnosed with Crohn’s Disease at age 23.

Dear 11 health
My name is Joshua L. and Crohn’s Disease has welcomed me with open arms.

Here is my story. I was diagnosed with Crohn’s at the age of 23. I can remember the moment. I went to use the restroom and I was in pain like nothing I had ever felt before. The countless colonoscopies, 14 different medications tried, blood work nothing could get my symptoms under control. I can remember the utter panic of simply having to know where a restroom was no matter where I was and wondering whether I would make it in time. I thought this was how simply life was going to be and I had come to terms with that.

Now, 15 years later I began multiple surgeries in hopes of having a better quality of life. From 2011-2014 I’ve had my colon, rectum and rectal stump removed and have an ileostomy. During the last surgery when I was having my rectal stump removed I developed an infection at the surgical site. After the infection was cleaned out I had to heal naturally from the inside out. This left an 8 cm deep wound that had to be packed daily by a home health care nurse in order to heal.

A lot of life changing moments of weighing 100 lbs to now a healthy weight of 195 lbs. From the days of being moved to a rehabilitation center for three months after the colon and rectum were removed because I was too weak to go home. To the bouts of dehydration when learning to care for the stoma with hospital stays. Through all of this now my quality of is 1000x improved! Currently, no medication is taken and I can eat whatever I want.

I have a passion to help others who are going through similar experiences that I have gone through. I want to make a difference in other people’s lives. We need to erase the stigma and shame surrounding sometimes how people with ostomies feel. It’s ok to have one after all it saved my life!

Sincerely,
Joshua L

Anyone who has undergone ostomy surgery knows just how life altering it is. After having ileostomy surgery there were many things I had to adjust to, especially within the first 2 years after having my surgery. Learning the new process of my newly fashioned anatomy, I began to alter certain habits of my life to accommodate how my body functioned. I had to ask myself questions like, “How long after I eat this will I need to use the restroom?”, and over time I learned what types of foods and drinks caused my pouch to fill up more quickly. Forming new eating habits took some time, but I think what took the longest was learning how to avoid dehydration.

Forming new eating habits took some time, but I think what took the longest was learning how to avoid dehydration.

You might be thinking – “Just drink more water…it can’t be that hard?”. And you are right, drinking more wasn’t the hard part. Actually, drinking large quantities in short spans of time caused some of my biggest issues with dehydration. Allow me to clarify so there isn’t any confusion. I would drink, and drink, and drink, large amounts of fluids in a very short amount of time and my ostomy output would be out of control. I went to the Emergency Department numerous times because I could not seem to slow down my ostomy output. It took me years before I could appropriately manage my hydration, but I learned what contributed to high output levels.

It took me years before I could appropriately manage my hydration.

This is a picture of me in a Med-Tent at the Stagecoach Country Music Festival. I had become severely dehydrated during the festival weekend and needed IV fluids.
This is a picture of me in a Med-Tent at the Stagecoach Country Music Festival. I had become severely dehydrated during the festival weekend and needed IV fluids.

Some of the contributors to my increased output included sports drinks, fruit juices, soda, and even alcohol. Now this doesn’t mean I had to completely cut these items out of my diet, but there are little tricks I picked up over time. Diluting juices with water, switching to diet or sugar free drinks, and ultimately to SLOW DOWN and not guzzle my drinks down, these all help to manage my output and allow me to maintain my hydration. Hydration is important for everyone, but especially for ileostomy patients; so tune into your body’s habits, learn what effects your output, and utilize any resources available to help keep you hydrated and aware of your output.

…tune into your body’s habits, learn what effect your output, and utilize any resources available to help keep you hydrated and aware of your output.