ANAL FISSURE AFTER RADIOTHERAPY

  • 20 replies
  • 44 subscribers
  • 1318 views

Hello everybody, it's a very long time since I was on here - I hope you're all as well as can be expected.

The reason for my silence is that my pain has just gone on and on and having tried many different prescribed painkillers, ie Gabapentin, Pregabalin (which both caused terrible bloating), Tapentadol which had very serious side-effects indeed and I stopped that. Back to liquid morphine, when I discovered that due to poor instructions, I had been taking twice the amount I should have taken.  MST (slow release morphine) etc etc. I am in constant burning pain, esp after pooing. Burning, stinging and aching all day. Bearing in mind that I finished my treatment on 2nd January, this is a very long time to be in such acute pain.

I changed oncologist a while ago because I simply had no faith in the lady I was seeing, but things go on just the same. I was due to see him in early October, following a scan in September, but yet again the radiology dept hadn't "had time" to look at my scan and report to him. He phoned me however and wants me to have a colonoscopy under general anaesthetic, which I'm having tomorrow, Monday. The scan showed thickening and and narrowing of the anal canal, and they want to be sure it's not another growth. Personally I don't think it is, but I'm now wondering if I have an anal fissure because of the constant pain I'm in, which has been caused by the radiotherapy. 

Any views and replies will be very gratefully received - I long to be pain-free and also to understand why I'm in such pain. 

Jester (Beth)

  • Hi Jester and welcome back. Will a colonoscopy pick up if there is a fissure there or not? 

    gail

     
    Community Champion Badge

  • Hi Gail, that's what I've been wondering. The thing is, they're only going to look at the very bottom (ha ha) of the anal canal, and the anus itself because I'm not having Picolax, so perhaps they'll be able to see it if that's what it is. B

  • Beth

    I am so sorry to hear that you have these ongoing problems - it must be completely wearing you down after all this time.  I think it is a poor show that you had scans done in September that 'they haven't had time to look at' given the pain you are experiencing.  However, if you have a colonoscopy, I am sure that that should show if you have an anal fissure.  And I also had thickening at the tumour site but a sigmoidoscopy showed nothing and the explanation was scar tissue.  As for narrowing of the anal canal, I could be wrong, but I thought that was a given side effect after pelvic radiotherapy, I certainly have it and am due to have a procedure in November to 'stretch' the anus and canal in order to make bowel movements a bit easier.

    All that said, I would be guessing as to why things are so painful for you after all this time.  I am always tender, but don't experience the level of pain you are going through, and I hope they find some answers tomorrow that will lead to a more pain-free life for you.

    Sending lots of good wishes for tomorrow, please come back and let me know how you get on.

    Irene xx

  • Hello Irene, lovely to talk to you once again, it's been a while. I hope your stretching procedure goes ok and doesn't leave you with too much after pain.

    I was first down to theatre this morning, which was a relief. They said they found nothing untoward, but have sent a  biopsy off. They said it's fibrosis which is probably causing the pain, but didn't say anything about when the pain might lessen - I suppose because they don't know, so onwards it is, but feeling a bit more reassured now they feel it's all probably ok.

    My big problem of course is that I was already in a lot of pain & once the intravenous painkiller I had under GA wears off I'm going to be in real agony for a while. I seem to manage life, in spite of all the pain, but am not able to go back to choir, which I was really looking forward to, but I can't sit of course, so can't go along and hop up & down & wriggle about & disturb everyone round me, trying to learn. Maybe some day I'll find something to really help, but have to get through these next days.....

    Take care & thank you for your valued support. B

  • Beth

    I am so happy that they haven't found anything that concerns them but I am really sorry that they can't offer a bit more in the way of the ongoing pain.  I remember how much you enjoyed choir and it must be such a loss to you that you can't have this in your life at the moment, I really feel for you.  Hopefully you won't have too many side effects from your colonoscopy.  Have you thought of contacting the Pelvic Radiation Disease Association?  Whilst they are not able to offer advice, they can possibly point you in the direction of organisations who can help.

    https://www.prda.org.uk/

    Thinking of you.

    Irene xx

  • Hi Beth ( ),

    Firstly welcome back although I’m really sorry to hear of your ongoing issues & pain. I hope your colonoscopy went well today & that you’re not in too much discomfort. I also really hope that it gives you some answers as to why you’re still experiencing so much pain. 

    I had a conversation with my oncologist quite early on in my recovery from my treatment, he knew that I was volunteering on the Macmillan online community, I expressed that after reading other people’s experiences I felt incredibly lucky to have escaped the ongoing bowel disturbances that many do after pelvic radiotherapy & we went on to have a discussion about the after effects of our particular treatment. One thing he said was that people that have life altering long term side effects such as chronic bowel disturbances, ongoing pain in the anal area and/or chronic anal stenosis that stop them living there lives how they would like to should seriously consider going down the route of a colostomy. Now I know you’re a long way off making a decision such as this but I think it’s really important that people should know that this is an option to improve quality of life . 

    I so hope you get answers following your procedure today & that a plan can be made moving forward to get you pain free. Please keep us updated. 

    Nicola 

  • Nicola, that is exactly what the colorectal surgeon (who is doing (I hope!) my procedure later this month said to me.  He said people's lives can be transformed for the better by having a stoma.  I mentioned it to the young oncologist I saw the other week and she suppressed her shock and said that is quite a step, if you don't get on with it they can be difficult to reverse etc.  But I think some oncologists are not totally aware of the ongoing misery bowel problems can cause.

  • Hi   

    I have an end colostomy so a reversal would never be possible, and I’m absolutely fine with that, to be honest. I would choose NOT to have a reversal even if it were possible! It’s very easy to live with. 

    Sarah xx


    Community Champion Badge

    Cervical Cancer Forum

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Thank you for that Sarah - I really appreciate your view, especially since it has been offered to me as a solution to my ongoing problems (which, if I am honest, pale into insignificance in comparison so some of our fellow forum members).

    I am going to see how the procedure goes later this month (and the ongoing stretching - even talking about it makes me wince!)

    Irene xx

  • Oh yikes Irene-I’m wincing in sympathy at the thought of your procedure! I really hope it’s successful and helpful for you. 

    A colostomy is much easier to live with in my opinion than my urostomy. Without a bladder, there is nowhere for urine to be held so it “goes” all the time. It is just more complicated. The colostomy doesn’t do that, so it’s easier. Some days there can be a lot of output, but it’s quick and easy to change the bag, but other days there’s nothing so you don’t notice it’s there. 

    Sarah xx


    Community Champion Badge

    Cervical Cancer Forum

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm