Resection and awakening to an ileostomy

Hello All!
Back in March, I told you all about my diverticulitis vs. CD flare in the sigmoid colon. After a flex-sig, the GI said definitely a big, complicated diverticulum that had become infected. Multiple rounds of antibiotics led to only a small improvement in the obstruction symptoms. Late June colonoscopy led to the GI not being able to pass the scope. No wonder I couldn’t poop or eat.

Was sent north to the U of W Hospital as it was felt too complicated for our town. Good thing! On July 13, my five hour scheduled surgery to do a sigmoidectomy turned into an almost 10 hour marathon.
My sigmoid colon was folded over at a 90 degree onto my rectum and was firmly attached. The mess was all wedged between my rectum and bladder. All of it had to be carefully dissected from its surroundings, including the mesh from a previous surgery. The surgeon was able to cut out the diseased portion and attach it to the rectum. However, it didn’t reach the surgeon’s standard in terms of attachment – so I have a temporary loop ileostomy. That was surprising to wake up to!

Recovery is going as well as expected. I am anemic so tire easily though managed to walk 2 miles yesterday on post-op day 11. Having trouble getting enough food in me. My stomach had gotten so small during the 6 months leading up to this, I fill quickly. Also, my small bowel gets very distended after I eat. Also, during our hot weather, getting enough liquids is tricky.

Only had two leaks so far – how dehumanizing. Having adhesive allergic reactions and the ostomy nurses are working out to find a barrier that I don’t react to.

The real kicker is the pathology of the removed portion cannot agree whether it is from CD or diverticulitis. Multiple UofW pathologists looked at it and no one is certain.

Oh my goodness, Ides! That is crazy!! You are handling the surprise so well, though! I'm glad you've had good doctors.

What an ordeal!! I hope you heal quickly and can put this all behind you.

Aw geez, what a thing to wake up to. If you need any advice or are looking for a forum with lots of info try veganostomy. Eric is the founder and he has a ton of info on the site, it's for everyone not just vegans. I've found it to be a life saver!

Also, I'm glad you were sent to a capable facility. It's best to be some place with the resources your case needs.

Hugs and well wishes.

Thanks for the well wishes everyone! My surgeon told me she doesn't want me to get comfortable with this ileostomy. So I hang on to that thought that hopefully sometime in October, I get reversed.

In no particular order - yes, I had surgery at University of Washington Hospital, Seattle. pmedic, if you need the name of a cracker-jack surgeon that deals with lots of IBD patients, email and I'll send you the name. Unfortunately, I don't know the name of a GI specializing in CD. Mine is in Tacoma.

I am currently using a 2 piece Hollister with a special wafer, no adhesive on edges, the pectin goes all the way out. I'll see tomorrow if the skin irritation is improving. Tried the Colloplast and that was the one that popped off every 12 hours. I think my stoma is too close to my belly button.

No dehydration issues. My soma output is so thick it's like paste. The only time it was watery was when I drank half a beer. Won't be doing that again!

That's nice that you felt well enough to have a half a beer. Sounds like a step toward improvement. You sound like you're in pretty good spirits considering everything. October is really only 2 months away. Having the ileo is interesting, I had mine for five or six months. I tried so many products. I was making the best of it. Thick output is good I guess. When it's thin, it can leak easier, but it can be easier to empty. There's definitely a happy middle ground. Sounds like you're already getting the hang of it. Alcohol always dehydrates and slows things for me. Your loop seems like it's better behaved.

Ides, how are you doing? Please update when you can

I am sorry. Yes, since you're just disconnected, not closed up, the stuff down on the bottom end keeps functioning. It shouldn't be a ton to let out, but it can be daily for some people. Since you have a loop, some output can pass through the pouching system. The loop ileo technically has an opening that comes from up and one that goes down. If you really inspect it, you would likely notice that it's a bit of a dome. I used to go push out whatever was there in the AM and that was it for me. My surgeon said some people do an enema to eliminate the waste, and then you don't need to do it for a while. I never wanted to worry about an enema again so I couldn't be bothered.

This is kind of gross and kind of interesting
/images.discovertherapies.com/article_images/images/000/000/045/max/loop.jpg?1493684511

You would be like the jpouch person waiting to reconnect, but you have your natural rectum and colon down there, which is great, so you can reconnect and get back to normal.

You definitely need to be careful about blocks with the loop. I had one with mine. Crampy and nauseous - passed on it's own luckily. I hope you never deal with it again. Chew really well, and definitely avoid mushrooms and corn. Mushrooms don't break down at all. There are a bunch of items, I am sure they gave you a list

Ides, how are you doing? It's been a while since we got an update.

when ya gotta go- ya gotta go. i mean to la! ;0)

Any news on your reversal? How are you doing?

Sweet! I had that barium enema and it wasn't so bad for me. Hopefully everything is quick and easy for you. Awesome that you're so close to getting reversed. It such an incredible feeling when you're done waiting. I could have lived with my end ileo, but knowing I had surgeries to face in the future I always felt like I was waiting for something. it's going to be a day to celebrate. It will take a little time to adjust, but you will be back to your old self before you know it. Looking forward to hearing about your experience. Let me know how it goes on Monday.