Sarah's Crohn's Blog - Getting Ready for my Final 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.

August 5, 2020

It’s been a busy few weeks with lots of traveling and adventures, so I suppose it’s time for an update. Every time I go to Boston, I have to get tested for COVID 48 hours prior to going into the hospital. Unfortunately, Mass General will only accept tests done at one of their partner labs, the closest of which is 3 hours away in New Hampshire. In the past six weeks, Dale and I have had to come down three times to do this, and it sure is getting old. The good news though… I don’t have COVID, and it gives us a good excuse to camp and explore New Hampshire.

Last week, I had two procedures done. The first was a special x ray to make sure I didn’t have any leaks in the new connection in my intestines, and the second test was a sigmoidoscopy (camera up my butt) to see how everything looked on the inside. The good news is that I have no leaks, but the bad news is that the sigmoidoscopy showed a severe stricture in the connection. What that means is that instead of the new connection being an open wide tube like the rest of my intestines, it has now shrunk to the point where it is almost closed. I was able to watch the camera as he was doing it, and it kind of looked like a butt hole - you could tell there was an opening there, but it was VERY small. My surgeon said this is not uncommon after surgery, and it’s kind of like scar tissue shrinking up as it heals. Since I don’t have any food passing through this area, there was nothing stopping it from getting smaller and smaller. He was able to fix this a week later (today) by doing a balloon dilation (using a special balloon to open up the stricture to its normal size). My surgeon is optimistic that this is a one-time complication since I’ll be having food passing through soon to keep it open. It’s still frustrating though because I seem to have some sort of complication every time I get something done. These strictures usually only happen in heavier patients because the small intestine has to get stretched further to reach the rectum, yet I still got a severe stricture being a small person.

These surgeries have also been more complicated than they should be. Many people who get this surgery do it all in one shot, without even needing the poop bag. The rest usually do it in two stages, but of course I had to do it in three because the inflammation was so severe. With that whining aside, I am getting my FINAL (hopefully) surgery TOMORROW, and I am beyond ecstatic. I am hoping that all my suffering and complications are a thing of the past, and that I will get a break and have something go smoothly for once. I will keep my fingers crossed, and in the meantime, please enjoy these photos from just a few of our many adventures that included more comet chasing, camping, hiking, paddling, floating in a lazy river, and more (I was too busy enjoying these things than taking photos, so this is all I got!).