Ileostomy reversal after rectal cancer op

Hi I wondered if anyone can give my husband some advice. Since his reversal in November my husband has been having qute a few problems. Just after the op he was in terrible pain but that appears to have got much better. His biggest problem is having to go to the loo at least 6-7 times straight after eating anything. We have tried leaving out or adding various food but nothin seems to work. The doctor precribed loperamide but he is now taking maximum dose and still nothing changes. Does anyone know of a different drug. The doctor suggested adding codeine but we have been advised by nurses that this could cause more problems. My husband is now virtually housebound unless he starves himself and has nothing to eat or even drink much after getting up until he gets back to the house. We would be grateful for any suggestions.

  • Hi,  you can use irrigion once your surgeon has checked you are healed, 

    the iry system is quick and simple good to use, if you look on the internet it will show you photos,  

    it is run on battery so no pumping by hand,  only inside bu about 3/4 of an inch if that, just a little ky jelly on the cone and I find a tiny bit on the anus, it slips in easily, support it by hand turn on pump the dial gives 1 to 6 I prefer about 4, use as much water as comfy to you, I use just under a litre, sit on loo about 10 mins to allow evacuation,  and you are good to go for 24 hours!  

    I sympathise with you totally,, my reversal was last July, the results were so much worse than the stoma,

    hours of misery in and out of the loo, scared to leave the house,  all dignity and pride out of the window! 

    Of course better than dying of cancer! Try the iry when you can,it’s changed my life, I have it back! Good luck Xx

  • I had all the same problems, it was miserable, one day I started running to the loo at 3 pm. Until 2 am, 

    have worn padded pants since the reversal,  I did at one time wish I’d kept the stoma, it was so much simpler,

    however since using the Braun iry,  I honestly feel normal, like my old self, I use in the morning, and forget it till next day,  I cannot believe the difference it’s made ,

    i hope you find things get easier, good luck. 

  • Hi Turner 

    Thanks for  the  reply  . I'm having  not good up most of  the  night and all I went through  has effected my kidneys  . I also picked up  infections  along the  way and ended back in hospital  . They have suguested returning to  the  stoma but I have  come this far I would like  to  try everything before this would happen . Have you ever done pelvic floor exercises  .. I really appreciate all your adviced . 

    Regards Cormac 

  • Hi cormac,,  so sorry your having such a hard time,  

    i too had kidney problems was very bad at one point ,  I see specialist every few months now, it’s up to 40% and stable. For now,  looking back I realise how ill I felt up to th e stone reversal, I assumed it was normal,! 

    The things that have changed my situation are the iry irrigation system from Braun, I get it on the nhs, 

    fibregel every day, ( makes huge difference to the diarrhoea, ) and of course Imodium, 

    im sure you know most of this, my reversal was last July, I haveonly  just felt normal, when I look back I realise that it was improving over the months,  but for sure the irrigation has made the biggest difference, 

    i was also advised by docs to take multi minerals and vitamins, which helped a lot, 

    hope you find this encouraging,, there is light at the end of the tunnel. Best regards.

  • Hi Turner 

    Thanks  and for positive advice .. I picked up CDIF 

    I was isolated  in hospital  for a month  bleeding  a lot .

    I'm home now and  have  problems with  constatpation 

    And hard stools make me bleed . It one way or the other  other . The have  mentioned  returning the  stoma bag  but at present  I'm not strong for another operation  as  what I eat sceem  to run out of me ..

    I'm trying  to  staying positive  but it's not easy I miss getting  out my energy  levels  take a knocking on toilet  travels .

    Regards Cormac 

  • I know it’s miserable,  I used to get icy cold after the loo , 

    do try fibregel and irrigation, ask your specialist nurse that’s how I got mine, 

    i do wish you well.

  • Hi

    I had my stoma reversal in July 2015. All the same problems.

    I had cancer of the bowel, any closer to the annul opening and I wouldn't have been able to have the reversal.

    These are a few things that have helped me.

    I read an article on bile, I was suffering a lot of the same symptoms, severe burning when I went. So bad I would come out in a cold sweat thinking about going to the toilet.

    The article was informative, bile is produced to handle fat in the diet, it is to a large extent re absorbed by the large intestine. I was short of large intestine so not all the bile was being re absorbed. Bile is very aggressive and disolves tissue. I cut down on the amount of fat I ate, particulalry cheese and chocolate.

    It took a couple of weeks but the burning did reduce, it didn't go away, but was liveable with.

    By chance I identified I was having a reaction when eating an orange, within 20 minutes of eating an orange I was on the pan, big time. The strange thing is I can eat tinned manderines without a problem.

    Then I watched one of those where does your food come from programs, orange squash is made with whole oranges, ervery last bit. I was drinking orange squash every other day. I cut it out, another noticable improvement.

    A point worth noting, when you had the bag nothing went into the bowel. The bowel is not just a storage area, it absorbs water back into the body as well as bile. It is also one of the least understood organs in the body, it is only in the last 18 months that the stomach has been recognised as an organ in it's own right.

    The bowel uses living organisms to help it process the waste produced by your body, while you had the bag they starved to death. It is probably why you are told it takes two years to get back to any sort of normal, those bacteria need to be reintroduced into the gut. No idea how that happens. Babies probably get the bacteria from their mothers milk.

    In the last 4 months things have improved for me. 

    hope this is helful

  • Dear fellow cancer survivor. I had my ileostomy reversed a year and a month ago. For the first three days I went to the toilet as much as 21 times. I was advised to take loperamide as you did and that brought it down to 6 times a day. For my sore bottom I use sudocreme. Now I take one per day and sometimes skip a day when the bowels are too slow. I too have discomfort when my bowels become loose. I find that light exercise helps with the wind. A starchy diet is helpful. I also eat fish twice a week. Thankfully when I am out shopping for my groceries I use the toilets in the supermarket if needed. I think our bowels will never return to what they were before the operation. Think positive and know that it will get better as time passes. Adjust your life to your present condition. I prefer to live with the reversal than with an ileostomy.

  • Will get better as the years go on.

     

    Takes a very long time to get almost back to normal.

  • Thanks for your reply. Much appreciated. I am now 76 years old and live in East Sussex. My journey through cancer started when I did a routine stool test in early 2018. Previous to the stool test, I visited my GP after I found that there was a noticeable change in my visits to the toilet. My blood was checked and I was reassured that there was no sign that anything was wrong. Lucky for me to have had the stool test which showed up abnormalities. An appointment was made for me to have a colonoscopy. I was a relatively healthy person and continued to attend gym after my retirement. I thought the colonoscopy would be a routine check since I had one done twelve years before. But the recent colonoscopy indicated that I had cancer. Colorectal cancer - Adenocarcinoma stage 3. The hospital moved swiftly and I saw the consultant and the oncologist in quick succession. I started my radio and chemotherapy sessions in June 2018 which lasted for five working weeks. I was truly overwhelmed by the care I experienced by the NHS staff and the friendliness of the other patients.It is amazing how being ill can bring people together in solidarity. When the chemo-radiotherapy sessions were over I had a break of five weeks. After another appointment with the consultant I had my operation in October 2018. I was given a loop ileostomy and lived with my stoma until February 2020 when it was reversed. I wondered, during the first month after the reversal, if I had made the right decision to have the reversal. I am happy that I persevered. The journey is not over and with the advice and sharing of our experiences I am reassured that I made the right decision. I get flare-ups ever so often. I might be doing well and then every two weeks my bowels feel irritable. I have kept a journal on the frequency of my motions and what I eat. My motions average 5 times a day with the help of one loperamide per day. This is a monthly average. My diet is also important in helping to control the frequency of my motions. I find parsnips are a blessing to my bowels as well as sweet potato, rice and pasta, chicken, fish and peanut butter, quaker oats and malted bread.  I also exercise: squats, touching my toes, situps and walks. These help my bowels to work better. I drink warm water and peppermint tea. These all help but I am still learning. Wishing everyone in the community the best. Never give up.