Toilet troubles

FormerMember
FormerMember

Hi, I am new here and looking for advice.

I had my large bowel removed in 2014 due to FAPs (my mother and brother passed away due to bowel cancer) and a year later I had it reversed so I now have a J Pouch. Long story cut short, in the last 7 months I’m on my 4th consultant, 1st retired, 2nd went on maternity leave, 3rd went on long term sick and after making a complaint to PALS I’ve been put under a new consultant who I am seeing on the 9th May. In the last 12 months I have had nothing but trouble with my pouch, whatever I eat causes me to spend most of my time on the toilet and I am getting between 2 to 5 hours sleep a night, for example yesterday I had a meal replacement shake for breakfast and for lunch and for tea plain chicken on its own and I’ve been up most of the night. Since September 2021 I have had an MRI scan, CT scan, CT PET scan at the Christie and a pouchogram. It’s been discovered that I have a stricture as well as desmoid disease. At the start of February, I was asked if I wanted to have a temporary colostomy bag to give me some relief which I have agreed to. I am hoping I will get a date when I see my consultant next week. I was told on the 1st March it would be in 4 weeks or so but that was with the 3rd consultant. Has anyone else had constant toilet issues due to a J Pouch?

Thanks

  • Hi Stopfordian73

    i wanted to say hello and noticed that you hadn’t had any replies.

    I have not heard of a j pouch and have been looking it up to learn more about it I am not a medic and have had a steep learning curve with my procedures

    Hopefully someone will have more experience than me. I’m a loop Ileostomy and things settled quickly. 
    It sounds positive that your booked in for the colostomy. 
    Keep us updated 

    Best Wishes

    Artsie Ann 

  • Hi, I too am new here and sorry to say but yes I am having the same problems with my stoma. and the pouches but they are not J pouch.   I had surgery in November 2019 after 12 weeks of chemotheropy followed by radiotherapy to shrink the colorectal  cancer.  After 10 days in hospital following surgery to remove my colon and rectum completely and have a colostomy and stoma put in place some of which were in the ICU, I was discharged with no care plan.  The problems began with my stoma soon after I'd returned home from hospital and to date 29 June 2022 I am still experiencing the same problems.  I have not had one NHS consultation with my consultant since my discharge  on 23 November 2019 and have since been diagnosed  with diverticulitis as a result of my GP referring me for a ct scan..  My stoma nurse also noticed that I have a para stomal hernia. 

    Out of sheer desperation and exasperation I opted to be seen at a private clinic  and was given an appointment for 1 st March this year, within 2 weeks of being referred by my GP.where the consultant who operated on me also had a clinic.  I asked and, of course, paid to be seen there by him.  After examination of my stoma he responded with the words and I quote 'Goodness me that is much too small was it really me who did that, I don't normally make stomas that small.  I told him of the problems I was having with blockages from the problem of passing the stools and this in turn was causing wind to be trapped thus giving me excruciating pains between my shoulder blades and through to my chest which was totally debilitating for me.  It meant me staying in bed with a hotwater bottle at the top of my back for most of the day , taking co-codamol  every few hours aswell as the ora morph I had left over from when I was having chronic back pain after my surgery. He then told me that yes this was causing the blockages and back pain and that I had stenosis of the stoma which meant I needed to have corrective surgery ie creating a new stoma on the opposit side and closing up the current one, and that he would sort out my hernia and diverticulitis all in the same operation and that he would refer me back to have it done on the NHS as I had no health insurance.  He also told me it would be classed as urgent and he would arrange for me to have a scan before the surgery so he could decide whether I needed to have open surgery or keyhole surgery.  

    On 10 May I went to the hospial for a CT scan and was told I would get the results within 7/10 days and followed by an appointment to be seen by my consultant.  I waited two weeks before  ringing the hospital to ask for my results and it has taken weekly phonecalls to the consutant's very flippant and secretary aswell as writing a letter to my GP which he then together with his own letter sent to the consultant on 14 June for me to be told that there is nothing in my notes about any surgery and that I was being discharged and referred back to my GP.  When I questioned this with the same secretary she then said I would be getting an appointment for a review with my consultant in a few weeks time but still no mention of any surgery.  I asked to speak directly with the consultant but she said I couldn't as he'd left the hospital at just after 4 pm.

    After all this I felt compelled to make a complaint to PALS.  They spoke with the same secretary who told them that I was not discharged and was on the list for routine surgery and would have a telephone consultation appointment in January 2023.

    I called the sectretary again yesterday and she said she did not recall speaking about me with PALS and that she could not answer my question about being on the surgery list as my notes were on the consultants desk.

    Tody my husband went to the PALS office at the hospital on my behalf and they are taking up my case again.

    I'm sorry I sound so downbeat about the experiences I've having but I was hoping that perhaps somone in this lovely group had any advice they could give me regarding my problems.

    Tia

  • Hi Tia

    Im sorry that you are having this problem it sounds neglectful to me. 
    Where are you?  
    Do you have a team to call, a colorectal nurse or see your stoma nurses. 
    I really hope that you have some support soon. 

    My stoma was flat to start with and I couldn’t keep the pouches on  as the output pancaked. Two weeks on and the stoma nurses changed me to convex bags which encouraged the stoma to come out more enabling the output to go where it should. 
    It’s terrible that you’ve been left 

    Best Wishes

    Artsie Ann 

  • Hi Artiste An,

    Thanks for your reply.  I am in North Wales.  I've seen my stoma nurses on many occassions but they don't seem to think that having such a small stoma is aproblem and I have taken all the advice they have given me to no avail.  I've been using closed convex pouches for a very long time put still the output will not flow into the pouch, so I just have to visit the toilet to change the pouch every time the poo sits at the opening.  Regardless of of the consistency I have to press around the stoma in order to get any of it to come out.  When I am constipated it ithorrendous trying to get large hard lumps through such a tiny opening and I end up with blockages.  

    You mention the colorectal nurse, is it a matter of ringing the ward to speak to her/him - are they different to the stoma nurses?  I feel a bit lost at the moment not knowing who to ask for advice.

    Thanks again for your help.

    Lyntony 

  • Hi Lyntony

    i really feel for you. Although I’m an ileostomy so my outputs loose most of the time. 
    To me it makes sense that the size really does matter you should not be blocking. 
    The colorectal nurses are part of your surgical  team and I have my nurses contact numbers to phone for my concerns. They work hours similar to the stoma team. 
    You should have a number to ring and discuss your problems after all the stoma team are the product experts the colorectal team are the ones that gave you it and can fix it. 
    If you go through your paperwork hopefully you should find their number. If not got direct to the hospital and ask for contact details of your colorectal nurses. 
    They are there to help before during and after the treatment 


    I’ve found them really supportive. If no joy phone here. They can advice you as well 

    Best Wishes

    Artsie Ann 

  • Hi Lyntony,

    My husband is having similar problems to you. I can't count the number of times his poo has pushed the bag off because of pancaking. He has also had spells of sickness and pains. A fortnight ago he went to hospital by ambulance, but by the time he was seen he had emptied 3 bag fulls, and they deemed nothing was wrong!! He started being ill again last Saturday and I was determined to get some answers this time. I rang the Colectoral Surgical care practitioner, who said straight away to get him in.  Far more help than stoma nurses who just say 'take a laxative', which he then sicks up!!

    I'm finding it very difficult when there is no chance of getting a doctor out. I also think the after care from a bowel operation is poor. When he had his larynx out 15 years ago we were seen every week for about a year and had lots of support. Hope you get some answers. I think we are on the way this time!!