Tenesmus (such a pain in the bum)

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Firstly, hello. I joined this community a few months ago but haven't posted before. I had a bowel resection in June followed by emergency stoma surgery (ileostomy) then started chemotherapy in July. I'm now two thirds of the way through that but the side effects have intensified recently with very severe nausea (thankfully now gone after missing 2 weeks of treatment) and for the past week what I've now been told is tenesmus. It's extremely painful and hasn't really begun to settle down. Today after speaking to the colorectal nurse and then my GP I've been prescribed a low dose of pregabalin. 

Is there anyone out there who's experienced this? I'd be really grateful to hear from you about your experience and what, if anything, helped you. I'm terrified to have my next chemotherapy in case it makes things worse because I don't think I could go through another week like this.

  • Hi Pisces22 welcome to the forum..I have never heard of Tenesmus but I'm.sure some of the lovely folks in this thread will be along soon to offer up experiences and information.. Has the Chemotherapy caused the Tenesmus or is this as a result of the surgery that you have had? Best wishes for now. 

    gail

     
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  • Hi  

    I’m sorry you are experiencing this, but hope the low dose pregablin will help-it does take a while to get into your system however. 

    As you’ve had an ileostomy, I wanted to let you know about our stoma specific forum in case you haven’t seen it yet-the link is here-

    Stoma Support Forum

    Posting there may widen the audience of people who read your post, as not all of us with stomas have been through bowel cancer. I do have a permanent colostomy, but fortunately have not experienced tenesmus, so I’m sorry I can’t help with specific experience about that.

    It sounds as if your medical team are not sure of the cause, so I hope your chemotherapy can continue without further issues. 

    Sarah xx


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  • Hi GRANNY59, it's from the chemotherapy. It's more than 4 months since the surgery and this has only started a week ago. I had various tests and scans last week and the doctors decided my stomach and gut are inflamed.

  • Hi Sarah,  I'll have a look at the stoma support forum, thank you.

    Denise 

  • I had it- as I understood it, it was more from the brachytherapy I had after radio/chemo. The oncologist warned me about it  as a side effect of brachy-and it really did settle down,  it just gradually improved and went away eventually. I guess everyone is different- it does sound as if you're really having a hard time with it! Hopefully the pregabalin will do something for it. 

  • Hi Lucy, thanks for responding to my post. It's comforting to know that someone else has had this, even if from a somewhat different cause. It's easy to feel very alone when going through something like this. The tenesmus got a bit better yesterday and today has more or less gone since I got up this morning. Whether that's due to the medication or just my body recovering after a couple of weeks off chemo I have no idea but I'm very thankful either way. I'm not looking forward to my next treatment tomorrow. 

  • Oh glad to hear it's better! It's just so hard and exhausting isn't it, when you have a symptom and have no idea if or when it will go- and then when suddenly it does, it's such a relief! Good luck today, hope this one turns out a bit easier for you. 

  • I'm glad you got a break. I'm hoping it was the medication so the symptoms don't return after today's treatment.