Sarah's Crohn's Blog - Still Have an Ileostomy

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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.

June 20, 2020

Sarah and her colon pillow

Update: Well, I knew there was a chance of this happening, and it did. I woke up from my surgery and still had my ostomy bag. It was my biggest fear going into this surgery, but I was so prepared for this outcome that by the time it happened, I didn't really care because I had already worried and cried about it so much. Am I surprised? Not at all... I still had rectal bleeding when I walked into the hospital Thursday morning. I was prepared for it. But it still sucks, and it sure caused me a lot of worry leading up to the surgery.

So basically what happened is that the surgeon took a look inside and saw a lot of inflammation in my rectum due to my Crohn's. He was still able to reattach my small intestine to my rectum (good news), and he made a new ostomy called a loop ileostomy with my healthy small intestine further up. It's hard to explain, so I'll provide illustrations, but what he did was he "looped" my intestine out of my body and cut a hole through a small part of the intestine as opposed to dissecting it completely in half (which is what he did in my first surgery). This allows my body to continue diverting stool into my ostomy bag while giving the re-anastamosis (where he connected my intestines) time to heal without having pressure in the "pipes" from the stool. If he didn't do this, there would be a much higher chance of the anastamosis not healing, which would result in more invasive surgeries and the potential of having an ostomy for life. Instead, I will have it for roughly another 6 weeks, which is nothing compared to the 6 months I've already had it.

This is called an "end ileostomy". This was the first one I had. The small intestine was cut all the way through and stuck out my belly. This end was reattached to my rectum during my surgery on Thursday.

This is called an "end ileostomy". This was the first one I had. The small intestine was cut all the way through and stuck out my belly. This end was reattached to my rectum during my surgery on Thursday.

This is called a "loop ileostomy", which is what I have now. The repair will be much easier since part of the small intestine is still intact, and this area of intestine in healthy and in good shape.

This is called a "loop ileostomy", which is what I have now. The repair will be much easier since part of the small intestine is still intact, and this area of intestine in healthy and in good shape.

Between now and then, I will continue medical therapy (Entyvio IV infusions, which I started 3 weeks ago and need to give more time to kick in). The next surgery will be much simpler than this one, but I've learned the hard way that abdominal surgeries are no joke and result in a lot of pain and long recovery times (hence why I'm writing this post at 2:00 a.m. since I still have 30 minutes before I can get more oxycodone to go back to sleep). I was expecting to be back to my normal routine in 6 weeks, but now instead I'll be going in for another surgery and then having to recover from that. So instead of lifting weights, grappling, and horseback riding, I will be doing more walking, hiking, sightseeing, camping, and easy gardening. Maybe I can even get Dale to paddle me around in the wooden canoe while I sit there and look pretty . I suppose things could be worse since I happen to enjoy all those activities too (particularly the part when Dale paddles me around in the canoe since he normally never lets me take a break)! Plus, I can guilt-trip Dale into doing all the heavy-duty house projects now while I supervise!

So that's my update. I've been reminded many times that things could be much worse, and I've also been reminded that I have so many things on my "to do" list that I will have plenty of non-physical stuff to keep me busy in the upcoming weeks/months. I know I sound like a broken record, but THANK YOU ALL for your support. I read every single comment/message that is sent to me even if I don't acknowledge it, and it really helps me get through this knowing I have so many people behind my back. PS - Thank you to Rachel, Audra, and Caitlyn for this awesome stuffed colon thingy. It's a great neck pillow and has been a lifesaver during my hospital stays! If you want to get your own for yourself or a friend (It’s a GREAT gift!), you can find all sorts of organ pillows on Amazon here.