My Life with Crohn's

[Image shows three spoons on a laptop keyboard. Overlaid is a clip art of torn white notebook paper with a red paper clip that reads “#This Is My EDS Part 2” with a zebra head. In the bottom left corner is the banner for Thee Crohnie Grace]

Part two of the #ThisIsMyEDS Tag is all about Diagnosis with Ehlers Danlos Syndrome since diagnosis often doesn’t occur until later in life and is under diagnosed since it can cause an array of different problems per person.

1) How Long Did Your Diagnosis Take? When and how were you ultimately diagnosed?  It took 18 years before I was diagnosed. Due to having Crohn’s since I was little, many doctors blamed my problems on Crohn’s and it’s related issues. At one point my GI had put on me Celebrex because he believed I had Juvenile Rheumatoid Arthritis because it is common with Crohn’s. When the joint pain and joint related issues began to get worse they finally sent me to a Rheumatologist who told me I had Ehlers Danlos Syndrome and no arthritis, and after a genetic study it was determined I had the COL5A2 mutation that is linked with Classical Ehlers Danlos.

2) What was your emotional reaction when you were diagnosed? And Now? Honestly it was a huge relief to know it wasn’t all in my head, that I had validation, and relief to just have an answer. Of course then there was a bout of sadness over the lack of treatments and the fear of getting worse. Now I’ve just kind of accepted things and am at peace with my health overall.

3) When did you first start experiencing symptoms? When did you acknowledge them as symptoms? When I was 9 I started getting bad joint pain, around the same time I started Remicade for my Crohn’s disease, I assumed it was just a side effect of medicine and wasn’t until other problems surfaced that I began to suspect something was off.

4) Was there a specific age where your head drastically changed? If so, when was that? My junior year and that summer were when things really started causing problems. I had lost a lot of weight from a bad Crohn’s flare and the weakness and fatigue made the pain even worse, things were subluxating and dislocating more frequently and I started using a cane because I found standing and walking to be incredibly painful and I felt off balance quite frequently because I put all my weight on whichever side hurt the less.

5) What medicines, treatments, and/or devices do you typically need? Do you have access to all your needs? I have access to all my needs really. Medicine wise I rely on pain medication and lots of medication for comorbidities such as gastroparesis and POTS. I have an NJ feeding tube that keeps me nourished and keeps my medicine in my system. Mobility device wise I use a walker on a every day basis and a wheelchair as needed for longer events or things that require a more extensive amount of walking. I also use braces and KT tape on a regular basis due to joints dislocating or subluxating.

[Image shown at the top left shows my thighs and knees sitting in a car, my left leg has a brace and my right leg is taped with pink and purple KT tape. Image shown at the top right shows me sitting in a wheelchair in a cafeteria with my brother standing behind me holding his phone down for me to see while our friend stands to the left looking at his phone. Image at the bottom shows me in my dining room from the thighs up, my hands resting on the handles of my walker, I’m in white shorts and a pink shirt with some planets and text that says “Far Out”]

6) How often do you go to the hospital? How comfortable are you in medical environments?  I go to the hospital for follow ups with specialists and procedures as necessary, I tend to avoid the ER unless it’s for something that can be handled locally (like my kidney stones) because all my main doctors are 4 hours away at Cincinnati so we can usually schedule a direct admit to avoid the hassle of dealing with an ER since they are not usually equipped to deal with chronic issues. Honestly in a hospital I am pretty comfortable now (I used to not be) but I still get very uncomfortable in ERs due to many ERs not knowing how to handle chronic illnesses and such.

7) What kind of resources and support do you use?  My family and friends are really my main support. There’s not many sources around here so I rely on doctors and in depth research when it comes to questions and resources.

  And that concludes part 2! We are nearing the end of May and there is still one segment left so stay tuned and remember that when the month ends, awareness shouldn’t stop there. Spreading awareness can help by gaining the attention of others, raising money for research which could lead to treatments or resources for EDSers everywhere.

[Photo shows three spoons laying on a laptop keyboard, overlaid is clipart of torn white notebook paper with a red paper clip. On the paper in black text reads, “#ThisIsMyEDS Part 1: What EDS Is Like On My Body”. Below the text is a picture of the profile of a zebra head. In the bottom left corner is the blog banner that reads “Thee Crohnie Grace”]

“For EDS Awareness Month I’d like to try and…

It has been a while since I have gotten to post because college keeps me extremely busy and I have to ration my energy to high priority things like college, homework, self care, etc. As finals are nearing I have been even busier and struggling with headaches and vomiting a lot more here lately, no real reason except probably a mix of stress and the changes in weather.

I hit a bit of a low point this weekend. Most of the time I am an extremely upbeat and positive person with everything that is going on, but every once in a while it hits me harder and I start to get a bit maudlin. It’s hard to accept my own limitations sometimes. There was so many things I used to be able to do that I no longer can. I have to put my health before things I love far too much it seems. And while I know things could always be worse, they could be better.

This weekend I was supposed to attend my spring LARP event in Maryland, but thanks to a hip dislocation and headaches and nausea I stayed home because I knew I would be miserable. Even if I did have fun, I would suffer from it for twice or thrice as long as the event itself. It was going to rain which meant pushing myself around in the mud and it’s hard enough to navigate rough terrain in a wheelchair when it’s dry, let alone wet. And while I could have taken my walker then I would be in pain from stressing my joints even more after various dislocations the week before. So I stayed home.

At first it was a moment of relief because I knew that I would feel better physically staying home, but emotionally it took more of a toll. A lot of frustration and tears, and watching Moana on repeat for 2 whole days.

I was eagerly awaiting my PT (physical therapy) which was today. I was anxious because not many doctors know or understand Ehlers Danlos Syndrome, so I was afraid of getting a doctor who had no idea what to do, or get a doctor who was unwilling to listen or would push things too fast.

[Image shows me standing with my walker in khakis and a blue and grey striped shirt, feeding tube not hooked up]

I was happy to find out that my PT knew about EDS, knew not to push the movement but that I needed to do non weight bearing muscle strengthening exercises. She was incredibly nice and funny and talked to me like a friend while we did evaluation of my joint strength and did a few chair practices and had me walk a bit so she could see how I walk so she could better evaluate what braces would work best for me.

She told me to let her know when my pain was too bad and we could stop, but I pushed through because I was a bit excited and it felt so good to know I was making an effort. I often feel like people think I do not make an effort because I use mobility aids and because I’m not up moving all the time. So it felt validating to know that my PT acknowledged my pain and weakness and we worked with that to still get some exercises as well as she encouraged the continue of KT tape because it is good at helping with stability.

[Image shows my legs covered in KT tape laying across a couch with a white blanket with owls and a green blanket down towards the feet]

We only had a bit of issues with some buckling of knees when she had me walk with the bars which caused a bit of a sharper pain in my right knee and some bruising but overall I was extremely pleased with my first day of PT and she wants me to come back twice a week and she gave me some chair exercises to do at home.

[Image on the left shows me sitting in lavender shorts with my knees with KT tape and then using a belt to do some strengthening exercises from today. Image on the right shows a paper with a fold in the middle, it has little images of people sitting on chairs doing exercises and text explaining those but it’s not very visible]

After PT I went home and ended up taking a nap once I set up my feeds because I started getting a really bad headache. I woke up throwing up so I missed my class of the evening. I did some PT exercises while watching Moana for probably the 100th time (seriously the best movie ever).

Finals coming up have me a bit stressed out so I’m trying to remember to allow myself time to relax, hence this blog post, because if I stress too much I will become overwhelmed, I’ll get sick and it will make the things I stress about even harder. So I have to take a deep breath, remember my limitations, and do what I can in that moment and try not to overwhelm myself by the future. Present day Grace has to take care of Future Grace and the only way she (I) can do that is by remembering self care and to accept my limitations, no matter how hard that may be.