Sarah's Crohn's Blog - Fecal Transplant and Healing Garden

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.

October 21, 2019

Hi friends, it's been a while since I've posted an update, and unfortunately I am still writing these updates from a hospital bed. It is now day 58, and for the past two weeks I have been at Mass General Hospital receiving top-notch care for my complicated case. I continue to battle between my ulcerative colitis (which they now think is Crohn's disease), and a recurring C diff infection (I'm currently dealing with my third bout of C diff). Each condition (and the associated treatment) is aggravating the other condition so I'm really struggling to get over this since I can't get anything fully under control.

On Thursday, I received my first dose of FMT (fecal microbiota transplant). The traditional way to do this is to use a colonoscopy to put someone's poop up into your colon to recolonize your gut with good bacteria and out-compete the C diff. My colon is so inflamed that they could not do this, so instead I swallowed 15 "poop pills", which then made their way into my colon. No, they did not taste like poop, and it was no different than swallowing a bunch of vitamins. I did this two days in a row, and I have noticed that my bowel movements have decreased in frequency and my abdominal pain has subsided slightly. Unfortunately, I continue to have cramping and a decreased appetite, but I am happy that I am at least improving and going in the right direction! If you’d like to read more details about my FMT experience, I have written a separate post describing it in more detail here.

There is very limited data on using FMT in C diff patients with concurrent Crohn's Disease, so I was a bit of an experiment for the doctors, and they were concerned that the microbial burden could worsen my Crohn's. Luckily, it didn't. I continue to be dependent on IV steroids to manage the Crohn's, and tomorrow we are doing another trial of switching to oral steroids so that I can be that much closer to going home. The last time we attempted this, it did not go well at all, so I'm very nervous. If this trial of switching to oral steroids fails, I will likely need surgery to remove my colon. At 31 years old, this is the last thing I want to do, and it is also the reason I have been suffering for 58 days to try everything possible to prevent this from happening. If I do need surgery, I know I will not have any regrets because I know I did everything in my power to avoid it. The next few days will be very telling as to what happens next.

I am extremely malnourished and currently weigh 86 pounds. My body is very weak, and I can't even step up on a stair without using both my arms to lift me up. I look like a Holocaust victim, and if I fell on the ground right now I would not be able to get myself back up. I am losing the hair on my head so bad that I could make a bird's nest out of it every day. I haven't shaved in weeks because my hair isn't even growing back. My body is in 100% survival mode. Although I am doing some physical therapy, I can only do so much of it because ultimately any activity I do requires so much energy that I will be breaking more muscle down than I will be gaining.

My gut is not absorbing any of the food I'm eating, so weight gain has been extremely difficult, particularly because I do not have an appetite either. I am receiving TPN (total parenteral nutrition), which is where they give me "food" through an IV and gives me all the essentials like fats, sugars, nutrients, etc. Even with this, I am not gaining weight, and it is very scary because if I do get surgery I do not have many reserves left for my body to heal and recover. I am under great care here, but I certainly can't wait for all this to be over and the suffering to end.

On a positive note, the hospital has a wonderful Healing Garden in their cancer building (that's where this photo was taken). Dale and I go on wheelchair adventures through the hospital to the Healing Garden nearly every day, and it really helps lift my spirits. The first time I went, I cried because it was the first time I breathed fresh air in nearly 6 weeks. I can't even explain how something so simple can release so many endorphins and be taken so easily for granted. For as long as I have been a prisoner in this hospital, I somehow manage to be doing very well mentally. There are many people with medical conditions who don't have a "Plan B" like I do, and as much as I'd hate to get surgery, it would practically be a cure for me, and the knowledge that I can make this pain go away certainly helps me stay positive. I will try to post another update soon since this is going to be a big week for me, and in the meantime I just want to say thank you for all the support and love I have been receiving from my friends and family.