Post Ileostomy reversal

  • 3 replies
  • 36 subscribers
  • 240 views

Hi this is all new to me so apologies for my ramblings in advance!
Having had a malignant tumour removed from my lower bowel back in July 2023 six weeks ago I had a loop ileostomy reversal procedure. To date I am suffering greatly with constant visits to the toilet day and night and the haemorrhoids are so painful and burning. In spite of taking regular Loperamide 2mg half an hour before breakfast lunch and supper plus two before bedtime the regular visits continue. I have various barrier creams which help a little for a short time. With lack of sleep, not being able to go out of the house these past weeks is really getting me down. 
Am I the only one with this problem? I would so love to hear your thoughts and experiences on this matter. Thank you.

  • Hi  and a very warm welcome to the Community but sorry to hear about your ongoing issues.

    Navigating the cancer journey can be such a stressful and challenging time but getting support from people who have walked the ‘exact same' cancer journey can help a lot. (I have a completely different cancer).

    The New to Community is like our reception desk where we look to direct you to the best part of the Community for you to get support. The Community is divided into dedicated Cancer Support Groups (Discussion Rooms) so can I recommend you join and post in our dedicated Bowel Cancer support groups. These groups are safe places to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.

    To connect in with the group click on these linksPoint down

    Bowel (colon and rectum) cancer

    Ileostomy, colostomy and stoma support 

    …… then once the group page opens click on “Click to Join” when the black banner appears or “Join” under “Group Tools” (this all depends on the device you are using)

    When you are ready you can introduce yourself by clicking “+new” or “+” in the top right next to the group title. You can copy and paste the text from this post into your new post.

    Do get back to me if you need further help navigating the community.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi  and can I add my welcome to Mike’s.

    There is a sub forum within the Stoma Support Group which you may find helpful to read and post on. This is the link

    Stoma Reversal and Lars

    There’s lots of shared experience here and members will be happy to help you. I have a permanent colostomy, so unfortunately don’t have the relevant experience for you. Hopefully you will get some support and helpful advice there.

    Sarah xx


    Community Champion Badge

    Cervical Cancer Forum

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • First, be thankful that you were able to have a reversal.  So many are unable to and have a bag for the rest of life.  I never had hemorrhoids, thankfully, but I did experience urgency often.  I am a physical therapist and when I returned to work, I felt the compulsion to go to the bathroom multiple times an hour for at least 6 months.  Since the mind and gut are directly linked, I think the anxiety of the potential for accidents exacerbated the situation.  Sleep is essential for healing so you may need to ask your doctor for an antianxiety or depression medication.  The antidepressant that I was prescribed was low dose but it was a life saver.  One other, I believe major, item was water.  When I was going through chemo and radiation, I began drinking 100 ounces of water, with salt, every day.  The thought was to flush my system of the poison that was being injected into my veins and supply the cells responsible for healing the tissues that radiation was burning.  I believe that maintaining at least 1/2 my body weight in water a day was the greatest reason that I recovered as well as I did. I  work out 5-6 days a week and have since the day after reversal, following my lifting restriction, of course.  I am now stronger than I was before I was diagnosed. I am now two years post reversal and thank God every day that I was fortunate enough to have the procedure.  The journey is tough, mentally devastating, but in the end, you will be stronger.  You are going through the tough part, but you will get through it.  One day at a time, sometimes, one hour at a time.  Good luck and let me know if there is anything I can shed light on. Mike.