The procedure....

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Last Thursday I went as a day case to the hospital for the anal stretching to see if it would ease some of my loo problems.  The worst part of the day was the waiting for over two hours for my turn, my fault completely but in my nervous state I forgot to take any sort of reading material or even my Suduko book.  The nurses were extremely sympathetic but said after Covid they keep nothing lying around.  So I went in circles, reading every single pamphlet and leaflet and notices on the walls!

I saw the registrar before I went through and mentioned my haemorrhoids, and she said that until they looked she didn't know whether they would be injected, banded or cut away.  Well, I sat and thought about it and completely lost my nerve.  I had been thinking if I am going to be in pain anyway I may as well have them done.  But my daughter had hers done and was in agony with the incisions so I called the nurse and asked that they just be left alone.  So I went through, I certainly wasn't in there long, and when I was back and conscious the registrar saw me again and gave me a dilator.  I was in pain, but not excessive, they had dosed me up prior and during the procedure and I had a supply to take home.  My husband is away and I am staying at my daughter's and that night I was fine.  Friday I felt distinctly unwell, and Saturday I couldn't lift my head off the pillow.  I don't think this is connected to the procedure at all, I think it was some sort of virus I had picked up but I had such a high temperature my daughter slept in beside me she was so worried.  Fast forward a couple of days and I am almost back to normal.  But it does mean that because of being unwell I haven't started using the dilator so with much gritting of teeth I am going to try later today.  Loo visits have been much the same as before but later in the day, although now accompanied by excessive wind.  So the jury is out as to whether this has helped or not.  The follow-up appointment to see the consultant came through the day after the procedure and is on 4th January, so I will see what he says.  This is the consultant that offered me a stoma, who never rushes me when I see him and I have great trust in him.  What is interesting is the young (actually most of them look young!) oncologist I last saw looked really shocked when I told her about his offer and said that's a huge step, that if I didn't get on with it it may be difficult to reverse.  But her reaction, I think, bore out the fact that many oncologists are not totally aware of the ongoing problems that some people suffer after radiotherapy.

Anyway I'll keep you posted!

  • Oh Irene, what an ordeal for you! It’s good to read you’re feeling more back to normal but I bet the dilators weren’t sounding appealing! 

    It’s funny actually, in a way, seeing the differing views of oncologists and surgeons, and sometimes the lack of appreciation of quite what the aftermath of treatment can be like. When I first met my bowel surgeon he was really matter of fact, and wanted to try to save my bowel. I said no, take it-even though there was no cancer there, only radiotherapy damage. He said no-one had ever suggested that to him before! But for me it was a case of might as well have 2 bags as one, and give myself hopefully a better chance of no further recurrence of my original cancer.

    A stoma just takes a little time to get used to, but it can be very straightforward to cope with, so I can understand why your consultant would suggest it when the effects of radiotherapy can be life changing in themselves and impact badly on quality of life. If someone said to me I could get rid of one of my stomas, I’d keep the colostomy and get rid of the urostomy, which is much more of a bind to deal with. Not that that could ever happen with either of mine though! 

    I hope things are continuing well with your recovery, and things are feeling easier now for you.

    Sarah xx


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  • Hi  , Crikey you must have been exhausted by the end of the day!! There’s such a lot going around at this time of year isn’t there? I’m really pleased that you’re feeling much better now.

    Following the conversation with my oncologist that I’ve documented before regarding the life restricting, long-term bowel disturbances etc., that we can be left with as a result of the pelvic radiotherapy I would definitely myself consider a stoma, you’re trying everything available before taking that road but as Sarah has said this surgery it can be life changing for the good if the issues are unable to be resolved. 

    I hope you continue to recover well & things improve with the use of the dilators. 

    Nicola 

  • Oh my poor Irene! What awful luck to pick up a bug right while you're recovering from the procedure (although that's always a risk now going into hospital, isn't it?)

    I know when I got my hemorrhoidectomy I expected a painful recovery, but I was in no way prepared for how terrible it was. I don't know why he chose to cut instead of band, but I guess that's what surgeons do. I'd have made the same decision as you to pass on having them 'fixed'. Awful though they can be, surgery on 'em is ghastly.

    A year and a half out I still can't remotely imagine using a dilator. My bum is a gazillion times better than it was, but I still use the bidet or a peri bottle with cleansing lotion. 

    I don't think many doctors period are aware of the aftermath of anal cancer. 

    After all, it's something that primarily attacks older people, especially older women, and we're invisible.

    Sorry to be so glum. You've got it done and I'm so grateful to hear about it and how it's going for you. Hopefully once the bug is out of you, the rest will be smoother sailing.

    Hugs

    Suz

  • You are right, it is really interesting the differing opinions from the experts.  I am reminded of a work colleague many years ago whose brother had a bad  industrial accident.  One arm was withered and useless but they fought to save it and it caused him problems in every part of his life; he had to wear a harness to keep it strapped to his body and was in constant pain.  Some time on an older consultant gently suggested he would be far better off without the arm, but it was step too far for her brother, and the last I heard, he was still struggling on with it.  I am certainly not at all adverse to having a stoma if things don't improve, but it is amazing the stigma attached to them.  Only last night my daughter's Italian mother-in-law (we get on very well) looked aghast when I told her that could be the next step and started telling me all the things I could do to avoid it, but I told her, I have or am doing all these things - this could make my life so much better!

    And thank you Sarah, I am getting better by the minute.

    Irene xx   

  • Nicola, I will very seriously consider it if things don't improve; our friends invited us on a trip to India but there is no way I could go on excursions that start before 12 noon and I don't ever remember seeing on starting at that time on previous visits.  So we have turned them down, and I am missing all these opportunities.

    Thank you.

    Irene xx

  • Suz, I thought of you so my daughter wasn't the only one to tell me how painful it was and I have had enough pain in my nether regions to last a LONG time - I am so sore with haemorrhoids at the moment that I am reliving the conversation thinking I should have said if you can band or inject, go ahead, just don't cut.  The problem is the traffic in that area, it is making me clench my cheeks thinking about it!

    You're not glum, you have had doctors and some nursing staff who have had empathy bybasses - you certainly wouldn't choose to feel the way you do.

    Hugs back

    Irene xx   

  • Oh Irene there is not much else that can be said that already hasn’t been. I am disappointed with the medical profession at times when they just don’t understand how much some people can be affected by the radiotherapy long term. My experience is when I need some help there is always this wait until the next periodical visit and they say we will make an appointment with whoever and it’s just the waiting. I haven’t been affected as much as you by far and even I have to juggle with food so that it doesn’t affect my plans for the following day. On my recent GP visit when regarding a cough left from Covid she asked if I had lost weight. I told her my diet is a juggling game and my spontaneous pre life has long gone and everything is planned regarding my bowels. Since my lump surgery, my pain of opening my bowels has completely gone. I done have piles so I’m thankful for that. When I did have the lump and extreme discomfort I would soak in warm water to relax the anus and vagina and massage tamanu oil around which is known to help heal radiotherapy skin. Is it possible to try these dilators in a nice warm bath? I’m so glad you have a wonderful supportive family to help you but know how distracting that constant pain up the butt can be. You wonder if it is ever going to end don’t you. Regarding the stoma, only you will know when the time is ready for that decision and sure you will make the right one. All I can say is you are one of the lovely regulars on here who come to peoples aid when in need and you have us to do the same for you. Take care xx

  • Julie

    Trying them in a nice warm bath - that is a great idea and that's how I will start. I will also try the tamanu oil as well to see if that helps with the tenderness.  And I sympathise with juggling foods to maintain a quiet bowel, I don't have to do that but I struggle to eat, I find my appetite tailing off about a third of the way through my meal.

    You have given me a lump in my throat with your lovely comment, but I am only one of a few, and you are most definitely included in this number, who come on here, not even regularly but almost on a daily basis to check and see if there are any new posts.  We can all remember only too well the utter despair and trauma that a cancer diagnosis brings and I think most of us want to reach out and help others navigate this path.

    Thank you, Julie

    Irene xx

      

  • i had a stoma before treatment, the oncologist thought it was a ridiculous idea but i trusted the consultant more. i don't know how people have gotten through the treatment, mostly the burns, without a stoma. i have a hernia in mine and the consultant offered to do a reversal but i'm just having it repaired. i find it so easy. the op was easy, 2 drips of painkiller then i asked to try just paracetamol tablets which worked fine. if things don't improve i would definitely consider it x

  • You’ve got a healthy, level headed approach to this Irene, it’s all about weighing up the pros and cons so I’m positive you’ll make the right decision for you, my way of looking at it is if you’re severely modifying your life & missing out on things you really would like to be doing because of bowel issues then there will probably be more pros than cons. We’ve fought this disease & hopefully won the fight so now our lives are for living. 

    Nicola