Sarah's Crohn's Blog - First Time 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.
September 2, 2019
Good news - I have one hell of a view from my hospital bed! Bad news - I'm in a hospital bed. I was hoping to avoid this post since I don't like sympathy posts (and this isn't intended to be one), but as day 9 in the hospital begins, I feel it's time to keep everyone in the loop. About 1 month ago, I developed bloody diarrhea and cramping. This is nothing out of the ordinary for me, and I attributed it to a flare of my ulcerative colitis. Being the stubborn person I am, I waited about two weeks to see if I could get it under control on my own. During this time, I did my backpacking trip in New Hampshire which probably wasn't the best idea, but I've gone adventuring during flares before and been just fine.
After getting back from the trip, things kept getting worse. I was having 20-30 bowel movements a day, I couldn't drink a sip of water without cramping miserably and having to run to the bathroom, and I couldn't eat. I called my doctor for some steroids (the treatment for ulcerative colitis flares), and he requested that I do a stool test for C-diff which is a bacteria that is associated with antibiotic use and exposure in the healthcare setting, and can be notoriously hard to treat. Surprisingly, I tested positive for this. I was placed on treatment immediately, but after 7 days, I had 0% improvement in my symptoms. I was switched to the second-line treatment which costs $4,000 without insurance (thank goodness I have health insurance), and that didn't help either. At this point, it had been three weeks, and I lost about 20 pounds, which is 17% of my body weight. I treated myself at home supportively with a heating pad and frequent baths, and I just prayed that the medication started working.
When that didn't work, I decided to do a home fecal transplant (this is one of those "don't try this at home" things). Fecal transplants have a very high success rate in treating C-diff, but unfortunately I did not qualify for it from a hospital standpoint because I have not have a "recurrence" of my C-diff. Fecal transplants may sound disgusting to people who have never heard of them before. Basically it involves taking one person's poop and putting it into another person's colon. The idea is that the healthy person's gut flora will colonize the sick person's gut and treat their infection by overpowering the bad bacteria. To do this, Dale (a true saint) mixed his poop with sterile saline and put it in an enema bottle, and then I used that to squeeze it into my colon. Enemas only go so far up your colon, and I could not retain it for very long, but it truly was a last resort act of desperation. It did not help.
I told myself I would go to the hospital when I hit 100 pounds. That happened last Sunday. I was admitted into the hospital that day and was immediately placed on fluids and continued treatment for the C-diff. Surprisingly, a repeat test for C-diff came back negative. The doctor was perplexed by this because even after treatment, the test for C-diff often comes back positive for several weeks. She decided to do a flexible sigmoidoscopy which is a mini-colonoscopy where they stick a camera up my butt and look to see what is in my colon. They could not do a full colonoscopy because I had so much inflammation that I was at risk for having a bowel perforation. The sigmoidoscopy showed severe ulcerative colitis (which was expected since my colitis flares up anytime I get an infection), and it also showed a significant number of pseudomembranes which is a classic finding in C-diff. She biopsied everything, and surprisingly the C-diff came back negative again despite the classic findings on the sigmoidoscopy (we did question whether the home fecal transplant may have affected those results).
I still continued the treatment for C-diff, but because the severe colitis seemed to be the main problem, they placed me on IV steroids. The issue with this is that steroids can make C-diff worse (or any infection worse), so by fixing one thing, we were possibly making another thing worse. Pain control has been very difficult because all the medicines used to control severe pain have the side effect of slowing down your bowels. In my case, my bowels need to be moving to avoid getting a condition called toxic megacolon which would require my colon to have to be surgically removed (which would then require me to poop out of a hole in my stomach into a bag). At this point, I still struggle to eat and drink. I have good days and bad days, but in general I have not had any significant improvement in my symptoms. We are trying to rule out all sources of infection, and once all the tests come back negative, the next step is to begin an immunosuppressive medication called Remicade to treat the ulcerative colitis. The risk with this is that if I do have any underlying infection, I could get VERY sick. Unfortunately, it is really the only option I have at this time.
It is certainly scary for me since my symptoms are much different than a classic ulcerative colitis flare, and I do feel like something else is going on, but we just can't figure it out. I'm basically having to choose between a potent medication that may or may not work, or surgery. Of course surgery would be the last resort for me, so here we are now. I am very weak, very worn, and very low on reserves right now, but at this point I am just taking it day by day and hoping things turn for the better. The pumpkin is on the back burner right now, and to be honest, I haven't done much with him for the past month. Dale is doing his best to help fertilize, but at this point Bam Bam is on his own, and we will just continue to let him do his thing. Despite all the suffering I am going through, I feel very grateful for having so much support from my friends, family, and amazing co-workers, and it truly is helping me stay as positive as I can through this rough time. Until things get better, I will continue to enjoy my wonderful view and reflect on the strength I hope to gain through my suffering.
