I know it's Christmastime and I should feel happy but I just can't. I'm sore and tired and crabby. Everything is healing well from my surgery for the most part. After eight weeks, I finally got the drains out last Friday. So now the wound can actually begin to heal and hopefully I'll start to feel normal again soon. I literally have spent the last eight and a half weeks just alternating between laying in bed at home and working. I'm glad I was able to go back to work when I did, because I would have gone crazy just staying home. I managed to go out to eat dinner with friends last weekend and this weekend. A simple dinner at a restaurant...a totally normal thing, but for me it's terrifying. My bowels still are not controlling themselves correctly. And every time I move my bowels I need to clean really well (ie take a sitz bath for 15-20 minutes) Which is close to impossible to do in public restrooms. I have a travel peribottle that I can fill to spray myself down....but automatic sinks don't allow you to fill a bottle (let alone that the water is one temperature so not exactly what you want to be spraying yourself with). I refuse to go anywhere that doesn't have a previously approved restroom (and I am kind of the restroom expert...I can tell you four public restrooms on the four block walk between my office and my apartment...that's what ulcerative colitis does to you). I really can't go anywhere or do anything. I tire very quickly still. I'm asleep by eight or nine most nights. In addition, I'm terrified of germs. I'm still recovering from a huge infection, so even the thought of getting a cold terrifies me. I am on immune suppressants, so everything hits me harder and for longer than most people. It sucks. I still have drainage, and I'm terrified by any slight variation - is it thicker than yesterday? is it a different color? They say to look out for a change in odor. Easy enough, except I don't ave an olfactory bulb so I don't have a sense of smell to be able to tell what my drainage smells like. I'm terrified that it's infected. I can't see the wounds to even tell if they look the way they're supposed to or not.
And everyone is so happy I'm getting better. But healing from this abscess is one thing. There could still be complications from it down the road. And no matter what, once this all ends, I still have an incurable chronic diseases. My ulcerative colitis and my uveitis don't go away. My eyeballs will never be normal. My colon will never be normal. I am recovering from rectal surgery with a rectum that already doesn't function correctly. I haven't gone into many details here because it's disgusting and demeaning and demoralizing to go through. And I hate people telling me it will get better. Because it won't. It's just something you learn to live with. Another IBD Advocate died this week. It's a reality. I know how lucky I am. But I'm sick right now and I don't think the Entyvio is working. Every bowel movement hurts. And not just because of the quarter sized open wounds I've had for eight weeks, but because I have a chronic disease. And since I can't take the medicines for my arthritis, my ankle is swollen and hurts like nobody's business, my doctor has me wearing a brace to try to help with the swelling. My eyes are still not back to "normal". I'm not healthy. My face is swollen with chipmunk cheeks due to the weight gain from being on so many steroids. I had lost 20 pounds over the summer, because I was finally on track but it's definitely back...and then some. I know I'm not skinny but I've always taken pride in my athletic stamina and endurance. I was a gymnast and a swimmer and a bicyclist...my body was solid, but strong. I could hop on my bike and ride 20 miles the first day of spring without a problem. I haven't been able to get to the gym or workout at all basically in a year and 4 months....other than my few months of physical therapy when I was finally back on track and feeling good. Then I got sick again. I am weak and sickly and flabby in ways that I've never felt before. I'm really scared. And I don't need people to comment about how it'll all be alright because you don't know that. It might not. Once everything heals and I can get off the steroids, we can try to figure out what is actually going on with my body. The arthritis in my ankle and in my fingers could be a side effect of the Entyvio that could have just been masked by the steroids I've had to be on so I didn't go blind. Or it could just be arthritis, which is another extraintestional symptom of IBD. We really don't know how the Entyvio is working because I've been sick for most of the time I've been on the Entyvio...first with a horrible sinus infection, then with my eyes, then with the abscess. I'm so tired of baths. I'm so sick of my bathroom. I have taken at bare two to six baths a day for the last 58 days. I used to enjoy baths, but I may never take a bath again after this.
I went to my parents for Christmas Eve and then I got tired and sore and miserable so I went home after dinner. I missed Christmas Eve mass for what I'm pretty sure was the first time in my life. I spent Christmas Day in bed. I haven't even been able to enjoy my favorite cold snowy weather and that makes me really sad. I'm tired of all of this. I just want to feel better. I just want this all to be over.
Wednesday, December 27, 2017
Sunday, December 3, 2017
Awareness Week 2017
December 1st thru 7th is Crohns and Colitis Awareness Week. Crohns and Colitis Awareness Week was created by US Senate Resolution 199 in 2011. Crohn's and Ulcerative Colitis are two inflammatory bowel diseases that attack the digestive system. Crohn's disease can impact anywhere along the digestive tract from mouth to anus, and UC impacts the large intestine. Additionally, in many patients, IBD affects joins, skin, bones, kidneys, liver and eyes. These are auto-immune disorders - basically the body decides to attack healthy tissues.
I have Ulcerative Colitis. But I might have Crohn's Disease. We're really not sure. I've had some fancy expensive test that is supposed to tell you which you have, and it said UC, but the test is still experimental, so even those results are inconclusive. I've had some erosion in my small intestine, which would be indicative of Crohn's. My latest incident with the abscess also points itself towards Crohn's Disease. Either way, I have Inflammatory Bowel Disease, and my treatment wouldn't change too much with a different diagnosis, so we haven't worried too much about what we call it.
In the last year, I have had a lot of extra-intestinal issues all connected to my UC. I suffered from drug-induced lupus, a kidney infection, severe muscular problems in my back, a severe flare of uveitis, and a huge rectal abscess that led to my first IBD related surgery and a three day stay in the hospital.
Here's an infographic about my IBD. I liked the one on the UK website better than the US one hahaaaa.
It's been a month since my surgery. I'm not really in the mood to talk about living with UC during awareness week. I've been sharing a lot more than usual because of the issues I've been having lately. And people for the most part are pretty nice about it. But there's so much more I wish I could share, that I wish I could say. I've thought about making an anonymous twitter account, so that I can share all the gory details...because sometimes you need to share the nitty gritty gross details. I think it's important that people know that this disease is horrible and embarrassing and demeaning at times and I'm thankful for my friends who let me tell them those details!
I've been obsessed with Selena Gomez and her story lately. As someone who suffered from lupus for much of the past year...I love the fact that she's willing to talk about it. That she's able to say "yeah, I almost died" because of this is great and empowering. I like that better than the commercials with celebrities such as an NFL player with IBD in them...because sometimes people see those commercials and they think "ok, yeah, it's a disease, but you can have it and play professional football and be fine". For most of this year, I couldn't run to cross the street, let alone across a football field....I'd give anything just to be healthy enough for a nice bike ride. But a life with an autoimmune disease is not always rainbows and sunshine and sometimes it just really sucks.
I go back to the eye doctor and to the surgeon this week to follow up and see how things are healing on both ends of my body. Next week, I have some more bloodwork done, and then follow up with the rheumatologist. So many doctors appointments. 2017 is going to be remembered as the year of the doctors appointments. Blah.
I have Ulcerative Colitis. But I might have Crohn's Disease. We're really not sure. I've had some fancy expensive test that is supposed to tell you which you have, and it said UC, but the test is still experimental, so even those results are inconclusive. I've had some erosion in my small intestine, which would be indicative of Crohn's. My latest incident with the abscess also points itself towards Crohn's Disease. Either way, I have Inflammatory Bowel Disease, and my treatment wouldn't change too much with a different diagnosis, so we haven't worried too much about what we call it.
In the last year, I have had a lot of extra-intestinal issues all connected to my UC. I suffered from drug-induced lupus, a kidney infection, severe muscular problems in my back, a severe flare of uveitis, and a huge rectal abscess that led to my first IBD related surgery and a three day stay in the hospital.
Here's an infographic about my IBD. I liked the one on the UK website better than the US one hahaaaa.
It's been a month since my surgery. I'm not really in the mood to talk about living with UC during awareness week. I've been sharing a lot more than usual because of the issues I've been having lately. And people for the most part are pretty nice about it. But there's so much more I wish I could share, that I wish I could say. I've thought about making an anonymous twitter account, so that I can share all the gory details...because sometimes you need to share the nitty gritty gross details. I think it's important that people know that this disease is horrible and embarrassing and demeaning at times and I'm thankful for my friends who let me tell them those details!
I've been obsessed with Selena Gomez and her story lately. As someone who suffered from lupus for much of the past year...I love the fact that she's willing to talk about it. That she's able to say "yeah, I almost died" because of this is great and empowering. I like that better than the commercials with celebrities such as an NFL player with IBD in them...because sometimes people see those commercials and they think "ok, yeah, it's a disease, but you can have it and play professional football and be fine". For most of this year, I couldn't run to cross the street, let alone across a football field....I'd give anything just to be healthy enough for a nice bike ride. But a life with an autoimmune disease is not always rainbows and sunshine and sometimes it just really sucks.
I go back to the eye doctor and to the surgeon this week to follow up and see how things are healing on both ends of my body. Next week, I have some more bloodwork done, and then follow up with the rheumatologist. So many doctors appointments. 2017 is going to be remembered as the year of the doctors appointments. Blah.
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