Post surgical complications - help wanted

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My wife was diagnosed with anal cancer in July 2020, had a permanent stoma and then radio/chemo in late 2020 which was not successful so an operation in 2021 to remove all of remaining anus and rectum. Complication was that cancer was between anus and vaginal wall so operation required some significant restructuring.

Post operatively there has been no signs of reoccurrence in the last 3 years which is the good news. Bad news is that my wife was left with an abscess right in the center of her pelvis where it had not been possible to fully fill the "space" created by removing the affected organs and she had an infection. This abscess/space regularly fills with materiel and then she will have a high temperature, pain around the wounds and a discharge from what is probably still some form of fissure out to surface.

What she also gets is a hardening of the muscles in the buttocks, usually starting at the top and working its way down, it is almost like an involuntary clenching of the muscles and pain in the pelvis which seems to go hand in hand with a new infection in the abscess/space and followed a few days later by discharge. As she is allergic to the antibiotics they would normally use, what they can give her does not do much and eventually after a few weeks the symptoms subside. She goes through this cycle every few weeks at the moment and the team do not seem to have seen anything quite like this before and as you can imagine, 3 years post operative it is really getting her down.

Has anybody seem anything like this? Any ideas, suggestions?

  • Hi, sorry to be useless as I have no experience to help you, but I just wanted to say I hope there is someone here who is able to give you some advice. It sounds pretty awful for your wife and I think if it was me I might be asking to be referred on to someone who specialises in post op complications. Great news that the cancer has been treated successfully but very frustrating to be in this position. Maybe your team are already looking at courses of action - in fact I am sure they must be, but hopefully someone here might have some advice 

    All the best to you both and fingers crossed your wife gets this sorted and is able to carry on getting better.

  • Thank you for replying and yes we are looking at as many options as possible but not found anybody who has seen anything like this hence trying a few of these forums. 

  • I so wish I had something useful to offer. My heart is cracked thinking of your poor wife. To go through all that we've gone through, and then end up with this?

    Honestly, it makes me shrink.

    Spending now 3 years coping with this is so daunting. I'm in awe of you both for managing this. I'm glad she's got you.

    Is the team reaching out? It seems that something more than the same stuff that's not working well is in order. 

    Please keep us posted!

    Suz

  • Hello RRaw

    I am so sorry to hear about the ongoing problems that your wife is experiencing, they sound absolutely awful.  I am afraid I can't offer any knowledge on this but just wanted to let you know I am thinking of her (and you).  In your shoes I would keep pushing for another referral, and you are doing all the right things by exploring the forums.  Someone, somewhere, must have experienced this.

    I will keep an eye out too.

    Irene xx