• ileostomy and bowel movements

    Asked by JimmyB on Sunday, December 23, 2018

    ileostomy and bowel movements

    Hi all, I'm new today. I found this forum through google and I read stories that gave exact information I was looking for. Thanks. (I'll be looking further into post ileostomy reversal chats a lot more).
    My question now is that I've had a few bms while I still have my stoma.
    The first time, the doc said it was totally normal and nothing to worry about. I haven't been back to him since then and I've had several more bms.
    They seem to be mini versions of what post reversal people here have described.
    I have (I was gonna say rectal pain, but I don't have a rectum) lower bowel pain (?) before and after the bms. I have to go urgently. Then I feel like I'm empty, then have to go urgently a couple more times.
    The stool is thin and theres not much volume but I wonder where the stool is coming from.
    Is it residual from months ago, migrating down after a long time. Or is it possible that some stool squeezes through the stoma intestine (that seems unlikely).
    I'm just a bit worried. Tks :)

    15 Answers from the Community

    15 answers
    • GregP_WN's Avatar
      GregP_WN

      I can't help you with that, not my type of cancer, but want to welcome you here. Some of the colon cancer folks will give you some feedback soon. We hope you're doing well.

      8 months ago
    • JimmyB's Avatar
      JimmyB

      Thanks so much for the welcome GP!
      I'm well thanks. Just an occasionally uncomfortable issue that has me curious.

      8 months ago
    • Skyemberr's Avatar
      Skyemberr

      It could be residual stuff or mucus in there that is getting through.

      I didn't have much go through the rectal way after I had my ileostomy, but I'd had a colostomy for almost 9 months before it became an ileostomy after cancer surgery.

      It's possible to have things pass through the rectum. I got cdiff after chemo and had things pass then. If you had that you'd know because you'd be feeling pretty ill. If you start having fever or bloody stuff or big belly pain call the doc.

      It sounds more likely to me that some stool is bypassing the ileostomy. Things can move quickly with an ileostomy to the point where is hyperactive! Sometimes that can cause quick gastric emptying (that is an issue because it can dehydrate you very quickly or cause leaking). Other times a little bit will scoot by the stoma and keep going. If you keep seeing it go by the stoma tell your doc or the wound care nurse who is assigned to you. They know everything about ileostomies! They can also usually get the attention of your doctor if you're having a big problem and the doctor isn't realizing it.

      Once I got reversed it took about 3 days to pass anything. When you get your reversal I can give you a lot of info about that. I'm a year and a half post reversal and finally starting to feel somewhat normal.

      Good luck, and welcome to the whatnext board!

      8 months ago
    • JaneA's Avatar
      JaneA

      Are you still having chemo? Chemo with either a permanent colostomy or a temporary ileostomy may cause intestinal cramping, creating feelings of urgency and/or burning.

      8 months ago
    • JimmyB's Avatar
      JimmyB

      Skyemberr, thanks so much for all the detailed info!
      I really didn't know if it was possible for anything to get past the stoma. I'm glad to know that's a thing.
      My issue is mild for sure. Just a bit worrisome with the minor pain, urgency and frequency (sounds like a tiny tiny indicator of what's to come post reversal) I only recently read here about people having awful problems for a long time. That's daunting! The docs told me about LARS and said ofter people will have 4-5 urgent bms in a day then nothing for a couple days. But people here talk about pain, 20-30 times a day, enemas, not eating away from home,etc.and if my little issue is any indication, it seems I may be in for the same, once larger volumes begin to pass, post reversal. Gawd!
      I had to google cdiff. That sounds terrible.
      I'll talk to my doc about some things you've said here.
      Thanks, and thanks for the offer of future assistance. Seems I'm gonna need it.

      8 months ago
    • JimmyB's Avatar
      JimmyB

      JaneA,
      I am on chemo.
      I hadn't thought of the pain as cramping but that's exactly what it is.
      I only have it where my rectum used to be. Does that make sense?
      Thanks. :)

      8 months ago
    • Skyemberr's Avatar
      Skyemberr

      Jimmy you are super lucky that your surgeon or doctor is educated enough to explain LARS to you. Usually there is only a very very brief discussion about it because most physicians don't understand how much it impacts the patient.

      I have LARS, and it isn't any fun, but I'm finding that its getting gradually less severe with time.

      I still have those clustering events about once a week where I could be in the bathroom every 15 minutes until I decide to take medication to make everything stop. I try not to get to the point where I need to take medicine to stop but you need rest and sleep.

      Its happening less and less to me though, and my diet is getting more and more normal. For a long time post reversal I stayed with low residue foods and kept Chobani flip yogurts in my diet to keep things gentle.

      I don't have to do that as much now, but I can still tell when a LARS day is coming on.

      Getting the reversal was almost as frightening as being forced to get the emergency colostomy. It's very daunting to think about going back to allowing your gut to work in a way that has caused you pain in the past, especially since colostomies and ileostomies are not very painful in comparison unless the skin around them is angry, and you don't really know how things will work after so much surgery has been done!

      I feel really lucky to have gotten reversed though! It has helped my health improve a lot and I feel more at ease with my body again. I feel normal Even when my body isn't acting normal.

      If you have questions, please keep coming back. There are a lot of people here with colorectal cancer, and quite a few who have had reversals.

      8 months ago
    • JaneA's Avatar
      JaneA

      Jimmy B - that pain is our rectums used to be is called "phantom" pain - like amputees have when they lose their leg. The nerves are severed. Lots of people experience phantom rectal sensations. I only occasionally experience that phantom pain.

      There are quite a few of us here to help you so ask - we're here to help.

      8 months ago
    • JimmyB's Avatar
      JimmyB

      JaneA, thanks again. I never imagined phantom pain would be a thing. wow.

      8 months ago
    • JimmyB's Avatar
      JimmyB

      Skyemberr, Thanks to you again, also. I've had wonderful care since my first colonoscopy up til today, a year later. I've had kind people and doctors who give me the time to ask questions, and they give thoughtful answers - though I've learned that they dole out the detail of the answers in increments, so as not to freak me out. ;)
      You said LARS is getting gradually less severe with time. What kind of time are you talking about? Months? Years?
      You said you decide to take meds. Anti-diarrhea type meds? Other meds?
      When you don't have a 'LARS day', what is that like?

      I had no pain leading up to my rectum removal. My tumour was caught on a CT when I had kidney stones. I'm amazingly fortunate for that.
      Knowing from the start that my ileostomy was temporary, it's always been a nuisance - I never had to come to terms with accepting it as permanent. So the LARS that was described to me seemed inconvenient, but not all that bad.
      Then the issues that prompted my question here made me think, things may not be so rosey.
      Since coming to this forum last week, I dread the reversal and almost wish I could keep my ileostomy.
      I'm still in the ignorant/research stage, but post-reversal - back to normalcy - seems like it will be orders of magnitude worse than I'd ever thought. If I'm gonna be anchored to a bathroom, should I expect to not work for months??
      Sorry to pour this all onto you. I need to keep researching.
      Thanks for the personal responses and care.

      8 months ago
    • MsMarty's Avatar
      MsMarty

      Hi Jimmy and Welcome!

      I had a colostomy, not Ileostomy, but I did want to share that in research of my reversal I regret it. The horror stories far outweigh any normal results. Mine was flawless, no pain in first BM, or second or any. So, I got all full of fear and dread needlessly. Hope yours goes without a hitch! If you have any questions please ask.

      8 months ago
    • JimmyB's Avatar
      JimmyB

      Hi MsMarty,
      Thanks for the welcome and the reply.
      You nailed it with the fear and dread.

      I had all of my rectum removed. I wonder if you're in the same boat.

      8 months ago
    • Skyemberr's Avatar
      Skyemberr

      Jimmy when I mentioned it getting better over time I meant over about a year and a half. I am still not normal, but the bad days are much less frequent. I definitely am glad I was lucky enough to be able to have a reversal!

      The roughest time is right after the reversal when your body seems to have no memory of how it used to function, and you have to be close to a bathroom.When The reversal first started working I was in the hospital, and I spent the whole night going back and forth between my bed and the bathroom. The nurse was very understanding. That was the worst night out of all of them and I was ok still.

      I spent the first month in depends because sometimes there was zero control.
      It got better though and I can wear normal undies now! I don't worry about going out in public and having an emergency at this point. That's not to say I don't still have LARS days. I really do and there are no mistaking them. I sort of know when I am due for one and tend to plan to be close to home or only making short outings on those days because I know I will be in the bathroom 40 times. My body starts to feel bloated and funny, so I know I have a LARS day on the way.

      I usually let my body do what it wants to do one those over active days until I either can't handle it anymore or I need to sleep. At that point I will take Lomotil or dicyclomine or BOTH. That will usually stop things overnight so I can sleep. A lot of times my body is just being overactive by that point at the end of the day, so when I wake up the next day it will act like I am having a normal day again.

      The interesting thing is that even though my rectum is gone, my body has slowly adapted and the cells that are there now are doing the job of rectum. I don't know if this is because there were some of those original cells left or if my cells adapted. Nevertheless, it is MUCH better than it was when they first reversed it, and I am very grateful that I no longer have an open wound in my tummy from the ileostomy. I was thinking that today in fact.

      7 months ago
    • Skyemberr's Avatar
      Skyemberr

      Ohhh, and your question about work.... I have been so ill that I am not working. I don't know how ill you are, but I would say it is reasonable to want to work from home for the first month or two depending on how you are doing after the reversal.

      7 months ago
    • JimmyB's Avatar
      JimmyB

      Skyemberr, thanks so much for the response.
      It sounds like it's been and continues to be quite the journey.
      Like you, I try to keep gratitude for being able to have a reversal, in the forefront of my mind. Still sucks though ;)

      Im happy to hear you're 'normalizing' as your journey continues.
      I was told that the large intestine where the rectum used to be, will ateast stretch to some degree. I wonder also if your idea of the minor amount of rectum removed, will stretch and help normalize as well.

      It's not easy to find information on exactly our issue and I wonder how common your recovery process has been. I wonder if there's a spectrum from few to horrible side effects.
      It seems to me that your case makes good sense since the rectum removal dramatically changes how the whole system works.

      I don't have a surgery date yet, so it could be months away.
      I'm a worrier with anxiety and your story worries me when I think about quality of life and what kind of work I'll be able to do.

      I'll keep doing some casual research and look for more stories.
      I wish you the best and look forward to updates.

      7 months ago

    Help the community by answering this question:

    Create an account to post your answer Already have an account? Sign in!

    By using WhatNext, you agree to our User Agreement, and Privacy Policy


    Read and answer more gastrointestinal stromal tumor (gist), colorectal cancer questions.  Also, don't forget to check out our Gastrointestinal Stromal Tumor (GIST), Colorectal Cancer page.