Sarah's Crohn's Blog - Extreme Deconditioning
Sarah’s Crohn’s Blog is a series of journal entries related to Sarah’s battle with Crohn’s Disease. She was initially diagnosed with ulcerative colitis in 2010, but since then the diagnosis has changed to Crohn’s Disease. Anything referring to ulcerative colitis in these blogs was simply written before the diagnosis changed.
November 6, 2019
It is officially time to post my body transformation "before" photo (and video) because I'M GOING HOME!!!!!! I have been in the hospital for 74 days, and I would have never imagined I would ever be in a hospital this long, especially as a "healthy" 31 year old who takes such good care of my body. I hope by sharing my story, I have been able to give people an understanding of how serious chronic illnesses can be, particularly because most people who suffer from chronic illnesses hide this suffering in an attempt to feel normal. Despite living a healthy lifestyle, I got an infection that was out of my control, and it completely wrecked my body. A combination of not being able to eat, not being able to absorb what I DID eat, plus my body using all its reserves to fight this disease, caused me to become extremely malnourished and weak. To say I wasted away is an understatement, and there's no doubt I would be dead if I didn't have access to medical care.
At my lowest, I was 86 pounds, and in this picture I'm 10 pounds heavier at 96 pounds. You can see that most of that 10 pounds is in my upper body and face. That is due to the wonderful side effects of prednisone which include muscle wasting (as you can see in my little chicken legs) and fat deposition in unwanted areas like your belly and face. Clearly this is the least of my problems because my stomach is healing and I'm gaining weight, and for that I am grateful.
To summarize what I've been through, I have had multiple recurrent C. diff infections that aggravated my ulcerative colitis. I failed every antibiotic that was given to me for the C. diff, and after being transferred to Mass General Hospital I was able to get a fecal transplant (via the capsule method). My symptoms improved after the fecal transplant, and it saved me from getting surgery to remove my colon. As I write this, I feel very frustrated with Western medicine because from day one I wanted a fecal transplant, but I was unable to get it because it is not FDA-approved, and you cannot get it unless you have had two recurrences of C. diff. It took 54 days of suffering for that to happen. There's no point in being angry about it now, but it certainly makes me wish I had more control of the treatments I can receive as a patient, particularly since all I wanted to do was swallow some poop!
Although I am going home, I still have a lot of healing to do. My most recent sigmoidoscopy continues to show severe inflammation in my colon, and it will take several months for that to go away. I will be on a long taper of prednisone as my ulcerative colitis and colon inflammation resolves. I have A LOT of work to do to get my body back into shape. Three months ago, I was climbing mountains, and today I was happy to be able to step up on a 4-inch step without any hands. It is going to be a very long road to get back into the shape I was in, particularly with the prednisone working against my muscle gains. However, just like climbing a mountain, I just need to keep putting one foot in front of the other. I feel so blessed for everything in my life right now, and I'm excited to continue giving updates as my health improves.