LARS and Tenesmus

Hi there Riverboat75

Ive had a Lower anterior resection in August with an Ileostomy .  The syndrome as far as I know is a result of a reversal from rectal cancer. The tumour is low so getting the bowel and rectum functioning is tricky 

The feeling of wanting to go to the toilet I think is what I experienced but I’m not a medic so you could get advice from here or your team. The bowel makes mucus and gives you the feeling. Which I think is a positive that it will wake again. 

LARS is not only from a reversal as I have been diagnosed with this. It very briefly is clustering of bowel movements. There is a new sub group in the ileostomy group which aims to support both sets of people.

Very good news, Riverboat75, that you are now cancer free.

community.macmillan.org.uk/.../stoma-reversal-and-lars

hi Riverboat75 - I still occasionally get the feeling/urge I want my waste matter to come out of my bottom after 12 years of having a stoma. Impossible as I had rectal cancer so had to have my rectum and anus removed. For me it was a bit like an arm or leg aching but having had one of those limbs removed. It feels a bit strange but doesn't hurt. I had a colostomy, complications, then an illiostomy followed a few years later by a partial loop colonostomy (the last op was in 2015).

Kath 

You have hit the nail on the head! 

I’ve had experience of a different type with my son who had a spinal injury. The term they used was Phantom. The brain was sending messages for limbs to move but the limbs couldn’t because of the spinal injury so the limbs spasm’s  
He’s okay but it’s really made me think.

Our nervous system is so complex and our brains are programmed so it’s possible for our messages from our brains to take a while to bypass the before operations. 
It’s just a thought. 
It’s like when I felt really low and others thought it was because of my operation then I realised that I wasn’t getting the serotonin I need in my diet. 
Interesting 

Thanks Kath 

What was the distance from anal verge to tumor?

Hi, it was 10cm

Hey, I realise this was 3 years ago so you probably have found a way forwards by now but for the benefit of anyone else.  I had a very similar experience, although my ileostomy was a planned part of my original op.  I had a leak after so lucky really!  The feeling you described I also experienced, and was convinced that something wanted to come out.  In hospital in week 3 after infection the feeling was so bad I couldn’t sit or lie down and I wanted to manually evacuate my back passage because I was convinced that some putrid muck was going to leak through my anastomosis and poison me further - but the surgeon didn’t find this very funny!  Fortunately after doing a lot of knees up sitting on the loo and hula hooping my hips the pressure was relieved with a little motion on the loo.  Later on I continued to get this sensation and urge to the point it was distracting and awkward to sit on but not agony.  I hope your surgeon told you that mucus form your colon lining and some leakage through your loop lower end can occur so you do get some material in your colon that might want to come out.  I did actually pass some of that material for about the first 6 months - it would take a few weeks to build up and then occasionally it would come out, on the loo, after I’d sat down for a wee or just had a sensation that sent me to sit on the loo.  I didn’t strain but it just dropped out. The sensation mostly went away after 6-8 months with my ileostomy but there were times I’d feel it and not ever get any sore of motion to release it.  I’ve now just gone through a reversal and I am on this site again researching LARS, which is a whole other beast with 9 heads.  Good luck whoever is reading this and I hope it helps a little.  Other people sharing their experiences on here has really helped me. Thanks all.