Chronic Crohn's Complications: Is Bowel Movement Possible with an Ileostomy?

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Phlebotomist
Jul 07, 2024 4:22 pm

Hello everyone,

I am new to this group and I just need help. I had ulcerative colitis when I was 11 years old. I had my large intestine and rectum removed. I had an ileostomy for 2 months before my reversal. I honestly don't remember hating my stoma as much as I do now.

Fast forward 35 years. I'm now 46, Crohn's disease very bad. Turns out it could have been Crohn's when I was 11, so that's 35 years being untreated. I've been doing treatments and then got a fistula. Stool was basically coming out of my vagina. I got my ileostomy almost 4 weeks ago to let the fistula heal. Hopefully, in 4 to 6 months, I can try a reversal. On Friday, I started having bad pressure down there and the urgency to urinate. Stool is leaking out of my vagina again along with blood and mucus. Yesterday, I started feeling the urge to have a bowel movement. It's happening now. Stool, blood, mucus at least 5 times yesterday and starting today. Is it possible to have a bowel movement with no colon and an ileostomy?

Caz67
Jul 07, 2024 4:33 pm

If I were in your shoes, I would not wait around for answers to your question. I would take a trip to the emergency room as a precaution. Xx

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w30bob
Jul 07, 2024 5:15 pm
Reply to Caz67

Hi Phlebo,

Yikes! To answer your last question... no, it's not possible to have a bowel movement when your bowel is no longer connected to your digestive tract. However, you can (and will) have discharges of mucus and any remaining contents that were still in your bowel before it was disconnected. You'll still have the same physical sensation you did when you actually did have bowel movements. This will lessen as time goes on, but will never completely stop.

But let me get this straight. They removed your colon and rectum and connected your small bowel to your anus. You still had Crohn's and it progressed, and a fistula formed between your small bowel and your vagina. So they gave you an ileostomy 4 weeks ago and now you're having both a discharge out your vagina AND a discharge of stool, blood, and mucus out your anus as well? Do I have that right?

If so, let's unpack it. First up, fistulas don't heal on their own. They'll never close by themselves and have to be essentially split open and allowed to dry up (I'm simplifying). Simply disconnecting the bowel ahead of a fistula and letting it sit for some time won't fix it. As soon as you reattach the bowel, the fistula will come right back to life. Fistulas form whenever the body senses a blockage or restriction in the flow of bowel contents. It's your body's way of finding a different path of least resistance. I'm really not sure what's going on inside you right now... if you're having a discharge of bowel contents through your vagina, your fistula is alive, well, and active... or severely infected and discharging those contents. If you're having a discharge out your anus, that means part of your small bowel is still attached to your anus and is generating mucus and leftover contents. Blood in either discharge isn't a good thing. Without a CT or MRE, we can't really say what's going on inside you.

If it were me, I'd heed Caz's advice and get it checked out sooner rather than later. And I'd find out exactly what they did and what's going on right now. You can't leave it all in your doctor's hands... you need to be informed and part of the decision-making process. I know it's a lot and can be overwhelming... but if you don't do it... no one else will. I also suggest contacting a Mayo Clinic satellite office or other large hospital center near you for a second and third opinion. Sorry I can't be definitive or much of a help. Please let us know what you find out.

;O)

Mysterious Mose
Jul 07, 2024 5:16 pm

I agree with Caz 10,000%. Don't delay a trip to the ER.

CrappyColon
Jul 07, 2024 5:36 pm

Any chance you have a loop ileostomy?

 
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Phlebotomist
Jul 07, 2024 8:21 pm
Reply to w30bob

Yes, you have it correct. Exactly how you said it is exactly what's happening. Very small amount of blood and mucus, but stool each time I go to the bathroom. I literally just had the urge and went, and sure enough, stool came from my front and back. I don't get it. Not a huge amount, but enough when it shouldn't be happening. My surgeon said the ileostomy would let the fistula heal. I go see him Tuesday for a 4-week checkup. I will ask questions.

Phlebotomist
Jul 07, 2024 8:25 pm
Reply to CrappyColon

I don't recall them calling it that.

warrior
Jul 07, 2024 8:38 pm

Hi, what a story, history, and situation.

Assuming by your handle, you are

Involved in the medical field, yes?

We appreciate your prompt replies. Thanks.

Bob always has a keen sense of what's going on. He has this vision type of thing, or he's just too damn smart.

I am speechless but suggest that you write a journal of events and questions to ask your surgeon. Something is wrong with your healing process and your understanding of the recovery. At fault is the doctor. Also, if you can bring someone with you to the doctor's appointment, it would help having a second pair of ears or note-taking.

You are going to remember and forget things. Likely mix things up in your quest to find answers. It is overwhelming.

Log that info down. For your safety.

Agree with others. Seek medical attention as it worsens.

Please.

Beachboy
Jul 07, 2024 11:04 pm

Yeah... ER visit. Poop in places it's not supposed to be is an infection just waiting to begin. Like I had... Sepsis. No fun.

Phlebotomist
Jul 08, 2024 1:59 am

Thank you to all for the feedback. I called the on-call surgeon tonight. Will let you know what I find out in the next few days.

IGGIE
Jul 09, 2024 4:23 pm

G-Day PH, get back and keep us up to date. Regards, IGGIE

Beachboy
Jul 10, 2024 4:20 am

As IGGIE said:

Let us know what happens.

Phlebotomist
Jul 12, 2024 5:02 pm

Hi all,

I went to the ER on Monday. I was admitted and had a pouchoscopy done in the OR two days later. That cleaned everything out, and I will have to do self-irrigation every couple of days. Urology got involved as well and said I had a bad UTI (no surprise since stool was in there), so they started me on antibiotics. They also placed a Foley because my kidney and bladder were very swollen. I had that removed yesterday and was sent home with oral antibiotics. So far, I'm feeling much better! Thanks to everyone for the advice and for listening to me vent!

CrappyColon
Jul 12, 2024 5:28 pm
Reply to Phlebotomist

So glad you went to the ER! Sounds like things are on the mend now ☺️

Caz67
Jul 12, 2024 8:00 pm
Reply to Phlebotomist

Glad to hear you're feeling better xx

Mysterious Mose
Jul 12, 2024 9:17 pm
Reply to Phlebotomist

Wonderful news!

Mrivera8
Jul 13, 2024 11:56 pm

Hi! Did you get any answers about passing stool from your bottom with having a stoma?  I had a loop ileostomy in the past which caused that issue. I’d basically get back flow from my stoma output into a different stoma hole, which led to my jpouch and out of my bottom. Sounds confusing bc it was a bad stoma and I had to get it revised, along with a new surgeon. I hope for you, this is not the case but passing stool is possible, however, it’s not normal.
Best of luck to you!