I’m headed to Philadelphia!

I actually can’t believe it’s just a couple of weeks away, but I am excited to attend this year’s UOAA conference in Philadelphia! This will be my first time getting to attend in the conference, so I am looking forward to that by itself, but especially so since I have been given the opportunity to speak this year. 

I will be talking about relationship considerations and having a family with an ostomy. I will be specifically sharing about my experiences with pregnancy and raising young kids while living with an ostomy. This subject is very important to me and I remember when I was faced with having surgery that one of my main questions was about my ability to have a family. I feel blessed to have been able to experience two pregnancies since having surgery to get an ostomy and I feel honored to be able to share that experience with others. 

So there are two things I wanted to put out there. First, I would love some feedback on specific questions you have about relationships, pregnancy and raising a family with an ostomy. I want to make sure that what I share resonates with those who attend, I would be grateful to hear some of the topics that you think would be interesting and beneficial. 

And secondly, if any of you are close to the Philadelphia area, I would love to see you there! Nothing brings me more joy that the opportunity to meet others in this community and to get an opportunity to hear your stories, as well. I will be speaking on Friday, August 8 from 10:00-11:30 a.m. If you are there, please come find me, because I would love a few minutes to get to chat with you. 

You can still register for the conference. Check out the UOAA’s website for information on what other great topics will be discussed and how to register to attend. 

Finally, I’m sure there are many of you who may have attended in the past. What was your experience like at the conference? Anything in particular worth knowing as a first time attendee? 

I look forward to getting to meet some of you in just a few weeks! 

Back to barrel racing after ostomy surgery

Terra’s story

January 25, 2012: The day my life changed…

A year and a half before, I was in a bad flare from Crohn’s Disease. I literally shrank to half the person I had been for 20 years. My hair was falling out, my face was turning gray, dark circles around my eyes and lips. Joint pain, terrible muscle cramps, no control of bowels and probably the worst thing was the large baseball size abscesses on my bottom. 

ostomy horse riding barrel racing

I forced myself to go to work as much as possible to keep my job. The hardest part about being sick for me was missing out on spending time with my horses. They have played a huge role in my life, even before I could walk. The Crohn’s made it difficult for me to take care of them, much less ride and compete. I AM A BARREL RACER! That is what brings me a ton of joy! But the Crohn’s had nearly taken it all away from me. I would have “OK” days and I would try to ride, but once my run was over I would be completely exhausted to the point that I would have to get help getting off my horse and I would crumple to the ground and have to sit there for several minutes.

Mid-December 2011, I went to my gastroenterologist and he said he thought it was time to take my colon out. This was something I truly did not want to do, but when the doctor said that I would continue to decline until I was no longer here, I realized that there was no other choice. My only question was: “Would I be able to ride once I was healed?” He assured me that I would still be able to. 

The colonoscopy before surgery showed that my colon was closing off in 3 places and in one spot had closed up so much that they couldn’t get the scope though. Not even the small one for the children.

January 25, 2012, was my surgery day. The plan was to remove only my colon, but once inside the surgeon saw that everything was so damaged that I ended up loosing everything—colon, rectum, and anus.

horse ostomy barrel racing rodeo

I went back to work 6 weeks later, but then had issues with the Crohn’s trying to attack the skin next to my stoma. This resulted in getting steroid injections directly into the skin. I had a very hard time getting the right appliances and sealants, and just wrapping my head around this whole situation. I had leaks all of the time, allergic reactions to adhesives, and I started to convince myself that I had made a huge mistake by letting them do this surgery. It took a full year to get things figured out and for my bottom to completely heal up. 

I certainly can’t say that I am “OK” with this ostomy, but it has improved my quality of life and given me back my ability to ride again. I rarely have a leak anymore and the only things that need done to prepare myself to ride is to wear snug fitting jeans and to make sure my pouch is emptied out before I get on. 

Never give up on the things that bring you joy and happiness. Hope is being able to see there is light despite all of the darkness.

#OstoMYstory

Baby wearing with an ostomy

I have two young kids, both of which have been fairly clingy. Basically, they like to held All. The. Time. So what’s a mom to do when her kids don’t like to be set down? Wear those babies! But since most carriers cover your front torso, it can bring up concerns of whether or not it’s possible with an ostomy. And since I desperately needed the use of my hands from time to time, I am thankful that I found ways to make baby wearing with my ostomy possible. Of course some carriers are easier to use than others, and some may require adjustments while others do not. This video shows the carriers I have used and had success wearing with both of my kids. 

Links to carriers used:

Ring sling (Sakura Bloom)
Wrap (Moby)
Structured carrier (Tula – standard)

This is not a sponsored post and I do not receive anything if you decide to purchase one of these product. I do not necessarily recommend these carriers over any others, but they are good options to consider. These carriers are simply the ones I used with my kids based on research and recommendations and I have included links to the products purely for reference. This list is not exhaustive of all styles or brands suitable for using with an ostomy. If you are interested in baby wearing with an ostomy, I encourage you to try out different options to figure out what works best for you!

Extra-intestinal IBD symptoms

I had someone ask me recently what symptoms I have experienced from IBD and, y’all… the list is long. An important part of IBD awareness is sharing knowledge about the different ways these diseases can affect any given individual. There are the typical symptoms of urgent-and-often bathroom trips, malnutrition and weight loss, and fatigue. But the physical manifestations of inflammatory bowel disease go far beyond this. There are symptoms due to the presence of inflammation in the body, as well as symptoms stemming from the medications taken for the treatment of IBD. Here is a rundown of a few of the potential manifestations outside of the digestive system, but is by no means an exhaustive list. 

stolen colon crohn's disease ulcerative colitis inflammatory bowel extraintestinal manifestations symptoms

Eyes

Inflammation in the eyes is often called iritis or uveitis. This is something that I have dealt with multiple times in the past. The symptoms of this inflammation are eye discomfort, redness, sensitivity to light and decreased or blurred vision. For me, it usually started by feeling as if there was something stuck in my eye, usually bothering me when I would blink, and soon my vision would begin to blur. It is most often treated by a steroid eye drop that can be prescribed by an ophthalmologist. In my experience, after a diagnosis by the eye doctor, the inflammation would clear up quickly after I began using the drops.

Joints

Outside of the intestinal IBD symptoms, joint pain has been the most difficult part for me to deal with. This pain may be caused by inflammation in the lining of the joint (arthritis), but sometimes the pain occurs without inflammation (arthralgia). The most commonly affected joints are the knees, ankles, wrists, elbows, and hips. As opposed to rheumatoid arthritis, the arthritis most commonly seen in IBD patients is not degenerative.

Skin

One of the strangest IBD-related symptoms I’ve ever experienced has got to be erythema nodosum, which manifests as painful red lumps. It’s actually caused by inflammation in the fatty layer of your skin. The lumps can appear on almost any part of the body, but are most common on the front of your shins, as mine were. Erythema nodosum is most often treated with the same methods as IBD, so usually your current treatment will help to reduce these lumps.

Bones

Your bone health can be affected by IBD. Like the rest of your body, parts of your bones are continuously broken down and regenerated. Osteoporosis occurs when the regeneration can’t keep up with the breaking down, causing your bones to become brittle and weak. I have been told I have osteopenia, which is often a precursor to osteoporosis, where your bones are weaker than average, but not to the same extent. This manifestation of IBD is not as directly related as many others are. It most often occurs as a secondary symptom due to either malnutrition or prolonged use of corticosteroids or a combination of both. 

Circulatory system

Anemia is probably one of the most common extraintestinal manifestation of IBD. It means that your blood is not carrying enough oxygen throughout your body and is usually due to low levels of iron, B12 or folate. Patients with IBD often become anemic due to blood loss, malabsorption by the intestinal tract, and diet. Anemia is a major cause of fatigue in IBD patients, and can also cause dizziness, increased heart rate, poor circulation, even hair loss. 

Mental health

Patients with IBD are at a greater risk for mental heath conditions, specifically depression and anxiety. It’s not a surprising statistic, especially considering everything discussed thus far. Depression often involves feeling persistently sad or “empty”; feelings of hopelessness, worthlessness, negativity; loss of interest in activities once enjoyed; difficulty concentrating; insomnia or oversleeping; restlessness and irritability. Anxiety is often experienced as feeling nervous or on edge; not being able to control worrying; trouble relaxing; constant dread. These mental health conditions are commonly underdiagnosed in the IBD community, which is very sad considering they are often treatable, either via therapy or medical treatment. I was one who dealt with a lot of depression as a kid when first diagnosed, but I never spoke with anyone about it or entered into any kind of treatment. I regret not seeking out help at the time. 

As you can see, there is so much more to inflammatory bowel disease than just symptoms of the digestive system. And this is just a small sampling of symptoms that I have experienced personally, but there are other symptoms and manifestations that I have not covered here. Any time you are dealing with a strange symptoms outside of the digestive tract, I urge you to bring it up with your gastroenterologist, because there may be a link between that symptom and your IBD that you may not have realized.

Citations:
Levine, J. S., & Burakoff, R. (2011). Extraintestinal manifestations of inflammatory bowel disease. Gastroenterology & hepatology7(4), 235-41.
Loftus, E.V., Jr., Guérin A., Yu, A.P. (2011). Increased risks of developing anxiety and depression in young patients with Crohn’s disease. Am J Gastroenterology, 106(9), 1670–7. 
The Crohn’s & Colitis Foundation. (2017, April 10). Signs and Symptoms of Depression. Retrieved from http://www.crohnscolitisfoundation.org/resources/depression.html
The Crohn’s & Colitis Foundation. (2016, December 5). Stress and Anxiety. Retrieved from http://www.crohnscolitisfoundation.org/resources/stress-and-anxiety.html