Sarah's Crohn's Blog - Christmas in the Hospital

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.

December 27, 2019

Hi friends. I regret to tell you that this is not the happiest update I’m about to write, but nonetheless it is a much needed (LONG) update for everyone who has been concerned about me. I’m not doing well. After being discharged from Mass General Hospital on November 6, I had several weeks of feeling amazing. My bowels were solid and down to 1-2 a day, and I was getting stronger with home physical therapy. I was off all medications except for prednisone, which I was slowly tapering off of. Prednisone is a steroid that was treating my ulcerative colitis, but since I was now on Remicade (an IV infusion that I get every 8 weeks), I no longer needed the steroids. Unfortunately, my symptoms returned with a vengeance as the steroid dose got lower and lower. It got to the point where I had to bump the prednisone back up to my original dose, but that dose didn’t even make my symptoms go away. My gastroenterologist checked some bloodwork, and there were zero detectable levels of Remicade in my body (not good), and I also had antibodies to Remicade (also not good). What that means is that my body created its own antibodies (soldier cells that are typically considered good because they usually help your body fight infections), but in this case my new antibodies were “eating up” the Remicade, rendering the drug useless. Once your body develops antibodies to Remicade, the Remicade will no longer work, hence why my symptoms returned as I tapered off the prednisone.

My gastroenterologist switched me to a new IV infusion called Entyvio, and I got my first infusion one week ago. Unfortunately, this can take weeks/months to take effect so it is not something that will treat me overnight. It’s also not a guaranteed fix. In the meantime, we planned on adding another oral medication to the mix to help speed things up (but still by no miracle speed records), but insurance has yet to approve it. We scheduled a flexible sigmoidoscopy for Christmas Eve to evaluate how my colon looked, just so we had an idea of how severe things still were. I continued to deal with my symptoms at home, and unfortunately things kept going downhill. I was having 20-30 bowel movements a day, and they were completely liquid, like pee coming out of my butt. It got to the point where I was incontinent and could not make it to the bathroom unless I plugged my finger up my butt, and even then I often couldn’t make it to the bathroom in time. Poor Dale had to go buy me adult diapers because I had an accident at least 3-4 times a day.

The amount of cramping and pain I have experienced with this is beyond anything I can describe. The misery of being sick and in discomfort since August has already worn down on me, and the fact that it worsened to a whole new level is a feeling I can’t even describe. I took about 8 hot baths a day just to give myself some relief, but it was only temporary. The number of times I cried to Dale and said, “I can’t do this anymore” started skyrocketing to a concerning number. The number of times I also cried and said, “I can’t go to the hospital again, I just can’t” also skyrocketed. The thought of going to sleep and not waking up started to become the most peaceful thought I could think of (I’m not suicidal, please don’t call the psychiatrist on me).

I somehow made it to Christmas Eve, and I hobbled into the hospital that day for my flex sig knowing that I wouldn’t be leaving anytime soon. The doctors knew I was very sick the minute they saw me, and they already started calling Mass General to admit me before they even did the flex sig. As expected, the flex sig looked terrible, and by 1:30 I was in an ambulance on my way to Boston. I spent Christmas day in a hospital bed receiving great care from the amazing staff who took time from their families to take care of me, and after two doses of IV steroids, my pain began to subside and life became more bearable. I have talked to the GI team (who knows me very well from my last admission), and at this point it is agreed that it is time to get surgery to remove my colon. This is last thing I wanted to do because I tried so hard and suffered so much to prevent this, but it is the only option I have left, and I know that I put a valiant effort in to save my poor colon.

The surgery is not as simple as just taking my colon out. There will be several stages of surgery. The first involves taking my colon out, which will provide me nearly immediate relief and resolution of my symptoms. The surgeon cannot reconnect my intestines until they heal, so for several months I will have a “poop bag” that comes out of my belly and collects my poop for me. I will have to empty this several times a day and deal with the many unknowns of ostomy (poop bag) care. After things have healed, I will get another surgery to reconnect my bowels so I can poop out of my butt again. Since the colon is responsible for absorbing water and making your poop solid, I will have loose bowel movements for the rest of my life and will probably go about 6 times a day for the rest of my life. To you that may sound awful, but that is NOTHING compared to what I am used to and is not a big deal at all. There are always risks with surgery, and my biggest fear is that something will happen where I cannot poop out of my butt again and will require an ostomy for life. It’s a thought I don’t like to think about, but at the end of the day I cannot live in this misery anymore, and it is time to suck it up and start to get myself better.

At the end of the day, this surgery is going to save my life, and most people who get it say they wish they did it sooner. I imagine that will be the case for me as well, and I think my quality of life will increase dramatically after all is said and done. I will try to update you soon after my surgery (which I’m guessing will be next week), and I will share my new ostomy life with you to show you that I was being a big baby about it this whole time. In the meantime, I am sharing this photo to remind everyone what chronic illness can do to a person’s body. My body is so depleted and malnourished that I have lost an unbelievable amount of hair, and it will probably take a year to get my thick hair back once it starts growing again. Although I wouldn’t make a good Pantene model, the razor companies would love me because I’ve had silky smooth legs since August! It’s crazy what your body will do in survival mode, but at the same time it scares me because if my body doesn’t have the reserves to grow hair, it probably doesn’t have the reserves to heal my colon. That means recovery from surgery will be likely longer than average, but I will do everything I can to nourish and care for my body as I heal. I continue to count my blessings every day and thank every one of you for your support and encouragement during this difficult time.