Ste osis /Stretch

Hello Andi72 

I had severe stenosis and had to take a daily Laxido and prune juice in order to keep my stools extremely soft.  I went on to have anal stretching done under GA as a day procedure.  However, the colorectal consultant did warn me that my stenosis was probably caused by scar tissue after radiotherapy and that I would have to continue manually stretching daily, I was given a dilator the same day.  Like you I was really worried about overstretching and he assured me that any stretching would be conservative.  Although I was given painkillers when I left the hospital, I didn't need them as I wasn't in any pain after the procedure. Unfortunately it didn't help that much and I went on to have a stoma formation which made my life a lot easier.

Please let us know how you get on with your sigmoidoscopy, I hope the stretching is a solution for you.

Irene xx

Thank you  for your reply Irene,  it sounds like im is similar boat to you. I have anal dilators but not always good with daily use. Also find it impossible almost to find a laxatives regime thats manageable. Hopefully tomorrow I'll know what, if anything, they'll consider doing or whether its time to seriously consider a Stoma - which to be honest totally terrifies me.

Andrea, everyone's experiences with a stoma are different.  I went in fully ready to embrace having a stoma, I was so fed up with loo problems, daily Laxido causing loose stools and waiting a few hours until I was 'empty' before going out.  Occasionally I still had extreme urgency when out but was able to very quickly use staff loos in shops (and a clump of bushes!)

In the interests of transparency I should tell you I was coping very well but the stoma hasn't been quite the panacea I had hoped.  This year I have been having some problems although I hasten to add I don't think mine are the norm - my stoma was always very small and flat and I can tell it is shrinking even further!  So I am back to waiting until I have 'been' in the morning and daily Laxido is back on the menu.  I will probably have to go back to the consultant for his help.  Fortunately he and the other staff at the hospital were first-class in every way and went out of their way to help in the early days.

With regard to the actual stoma op, I found it to be much easier than I had expected. The staff were on hand with completely adequate pain relief if necessary, I had expected to be absolutely flat out but I was up and walking about without discomfort in a couple of days.  Even when I had an infection in the wound it cleared up quickly with antibiotics, I was out walking my dog again just over a week later.  Last month I had an inguinal hernia op as day surgery and found that much more painful.

You are between a rock and a hard place.  I made the decision to go ahead as I wanted a life not waiting around until early afternoon to go out and was also worried that regular anal stretching as I aged may prove very difficult.

Irene xx

Oh Irene you've had a rough time of it & and you're so good helping everyone on here with kind, thoughtful posts all the time whilst navigating your own health. 

Please do not hesitate in contacting surgeon to see if anything can be done to improve things. 

I'm home now and I was told there was a little bit of stretch done this afternoon to me to enable camera to get through. My stenosis was described as a 'polo mint' size  (now i understand all the difficulties I've been having as a polo mint hole ain't exactly large - TMI) lol.

I've follow up to discuss in more detail in a few weeks. 

Andrea 

Andi72 Ah, Polo mint size, no wonder you are having problems. On my last visit  following a three-month scan the oncologist (with tiny fingers) could only do a DRE about a centimetre in which drew quite a lot of blood and was really painful (nine months after my stoma formation).  Since then I think I have shrunk even more due to lack of use. 

I really do sympathise - going to the loo is one of life's most basic fundamental functions and I remember my sister and I comparing notes about our own mother and her mother-in-law constantly talking about their bowels.  Oh how we laughed.  How this has come back to haunt me - I try to keep quiet now about my problems when talking to my daughters but it isn't easy...

I would really like to know how you get on

Irene xx 

Crikey Andi72 , a polo mint has a very small hole doesn’t it!! That would be enough to cause anyone an issue. I hope you find things a little easier until your review appointment.

The majority of people that have come through this forum in my time here that have had stomas prior to or elective after treatment have all ended up singing their praises, even those that were fearful prior to the surgery. We’ve even had those that have decided against reversal even when that’s been an option. I remember a conversation with my oncologist & he said it’s an option that can literally hand a person their life back when side effects from this treatment causes debilitating issues. 

 Irene75359  I really hope you get sorted as you’re one of the people that has seen stoma surgery as the opening up of a more normal life for you aren’t you? A way to get back to doing the things you love so I hope this issue can be easily resolved. 

Nicola 

 Nikki65  thank you. I just didn't appreciate that the after effects are on occasion like this but still here & things looked clear so that's the main thing (if only could get vagina sorted too to enable some sex with husband )

Will be keen to discuss stoma etc in more detail in a few weeks as was a little out of it yesterday evening after GA!

(& thank you for all your support too)

Hello Andrea,

I’m sorry that you are struggling with this and it must be really challenging. 

I had an anal stretch procedure done under GA over 20 years ago. This was on the advice of a colorectal surgeon. The reason was that I had experienced a very bad perianal abscess which formed a fistula. I spent 2 nights in hospital for the abscess and had 4 lots of surgery to repair the fistula, and the result was some scar tissue and damage which seemed to cause real difficulties with opening bowels.

The procedure didn’t cure the issue but it helped and I never had any incontinence. Now, post anal cancer treatment I am definitely having some challenges again.

It does sound that your stenosis is significant given the feedback you had yesterday. It may well be worth trying the stretch procedure in the first instance to see if it helps. 

Wishing you well for the decision making and the next steps xx

Hello Irene,

I am really sorry that you are having problems.

 I also wanted to say that I wholeheartedly agree with Andrea, that you are so endlessly kind in offering support and sharing your experiences and knowledge with everyone while dealing with your own significant challenges. 

I do hope that something can be done to help and also hope that you are recovering well from your hernia op. Xx

 PEB24 thank you for sharing. I hope that things settle to a manageable level for you too very soon. If only we didn't have to poop!