Sarah' Crohn's Blog - Bowel Perforation and Emergency Surgery

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 31, 2020

A lot of you have been asking how I'm doing, so I figured I'd give you an update since a lot has been happening over the past few months, and particularly over the past few days. If you don't want to read the long story, I basically went to the ER for a bowel obstruction on Monday, had a minor procedure under conscious sedation to fix it, then got a bowel perforation when he dilated me during the procedure, then I had to go the OR for an emergency surgery, and now I have an ileostomy bag again for an unknown period of time, with a very good chance it will be permanent .

I want to start by saying that when people ask me how I'm doing, I'm going to say I'm doing well even if I'm not. That's because in general, I am doing better than I have in the past, but life is still quite difficult for me. After my last hospitalization in October, I have been dealing with a flare of my Crohn's disease. I've been having bloody diarrhea, extreme cramping, and 20-30 bowel movements a day. Now that I don't have a colon, it's really hard to hold it in during a flare, and when I gotta go, I GOTTA GO. Over the past two weeks it's gotten so bad that I've had about one episode of bowel incontinence a day, which has made it nearly impossible to do anything out in public or even go on a walk out in the neighborhood. I've also had an increase in pain over the past two weeks, so I haven't really been wanting to do much anyway.

My doctor has bumped up my Entyvio IV infusions to every 4 weeks (instead of every 8 weeks), he started me on another drug called methotrexate, and I'm also on prednisone. So that's THREE immunosuppressants for a little 105-pound girl, and they're not helping AT ALL. I don't understand since I'm very sensitive to most medications.

Sometimes it's hard to tell if my pain is just something that I have to push through and live with, or if it's actually something serious. I know my body pretty well, and I knew that something was going on this time, so I have been taking it easy. I had what I called a "feeling of impending doom" for the past two weeks. I could just tell that food wasn't traveling through as easily as it should and that I was essentially one sesame seed away from another obstruction. Because of that, I had only been eating soft foods and drinking mainly liquids for the past week, with the hope that would get me to my scheduled procedure on the 31st (today) to open up my strictures again. I took a chance on Sunday and had some solid food, making sure to chew it very thoroughly, but that turned out to be a very bad idea.

Late Sunday night, I developed worsening abdominal pain that kept me from falling asleep. As it worsened, it started to feel more consistent with my obstruction pain. I tried waiting it out all day Monday to see if it would pass on its own, but it just kept getting worse, and I had to go to the ER. The CT scan technically didn't show an obstruction, but it did show a probable stricture (a severe narrowing in my intestines which can cause obstructions), severe colitis which I already knew, and a lot of free fluid in my abdomen. I went in for my flex sig and dilation yesterday to open things up and get me back to feeling good again. Unfortunately, when my doctor was dilating me with the balloon, my bowel perforated (NOT GOOD) and I had to get emergency surgery. They think that the free fluid on my CT scan was due to a micro-perforation, and the dilation just made it "pop". Because my colitis was so bad, they couldn't just get rid of the bad stuff and re-connect everything, so now I have an ileostomy bag again. I am devastated. It may be permanent... It may not. We won't know until things start healing up again, but the prognosis isn't looking good since I am not responding to any medications. I'm going to try everything I can though, even if it means re-trying the medication that made me vomit every day.

I'm not going to pretend to be positive in this post because I'm completely and utterly depressed about my life right now. I take such good care of myself, yet I suffer so much. I spent the first 20+ years of my life working my a** off in school so I could have a good job and be financially stable, and now I can't work and I'm spending my entire life savings on medical insurance and bills which is more expensive than you'd believe. I can't do any of my favorite hobbies because I'm either in pain, or I have an ileostomy bag that prevents me from doing it. I've spent over 100 days in the hospital since August 2019 (I stopped counting after 100 days), and every time I start getting my body back into shape, I end up back here again and have to start from square one. I have cataracts in both my eyes from all the prednisone, and now I've been on this terrible drug for 2 more months and am terrified of what it's going to do to my body now. I lost nearly all my hair last year, and finally after a year it's about 6 inches long and thick enough to kind-of fit into a ponytail, and now I'm scared of losing it again. If my ileostomy is permanent, I'm never going to be able to wear my dream wedding dress, a cute outfit, or a little bikini. I couldn't even pick out a Christmas tree this year with Dale because I felt so lousy, and I didn't even have it in me to drive around to look at the cool Christmas light shows that I so desperately wanted to see....or do the corn maze in the fall...or go apple picking...the list goes on... I'm missing out on so many things, and it makes me so sad.

I have a TON to be grateful for, and I know there are people out there who have it worse than me, but it's just really hard to see that all right now.

I DO know I have a huge support system, and the best thing you guys can do for me right now is to slap all the people on Facebook who are complaining about petty little sh*t, because I would dream of having their problems right now. This pandemic and current political situation have made people even more entitled and whiney, and it drives me nuts, but I just deal with it so I can keep in touch with the people I truly care about. Before I offend anyone (which isn't hard to do these days) I will stop my prednisone-induced rant and go read my book since that's about all I can do now. Love you guys .