Hi, I have an ileostomy. I have had it since 29/9/23. Post-surgery, I experience intermittent rectal pains/spasms that are so uncomfortable. Sometimes they prevent me from sitting down. I am aware of phantom rectum. I was wondering if any ostomate has experienced something similar, and what they did that helped. Thanks.
Yasmeen
Oct 26, 2023 5:47 pm
CrappyColon
Oct 26, 2023 6:18 pm
Hi, what type of surgery did you have? Complete colectomy? Do you actually have any rectum left? If so, is anything connected to that? I had to sit either half-reclined on my side or I ended up getting a hammock chair so weight could be distributed differently. But it was a while before I could sit 'normally'.
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Gemini16
Oct 27, 2023 12:40 am
Before ostomy surgery, I couldn't sit normally, but I'm still dealing with spasms everywhere. Sitting too long hurts; standing too long creates spasms that get worse. It's constant self-awareness. How can I live without making the pain worse? Feel free to contact me. I haven't met someone with the same constant life-interfering issues.
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Gemini16
Oct 27, 2023 12:46 am
Reply to CrappyColon
Didn't realize you suffered in that way... Haven't talked enough about our issues.
Yasmeen
Oct 27, 2023 4:39 pm
Reply to CrappyColon
Hi, I had a TME, so what's left of me now has been attached to my anus. It is assumed I don't have any rectum left. Please, how long did it take for you to sit normally? And did you use any supportive therapies? My pains have become unbearable in the last 48 hours.
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Yasmeen
Oct 27, 2023 4:43 pm
Reply to Gemini16
Hi Gemini,
I used to have rectal pains before my neoadjuvant chemoradiotherapy. They later subsided and came back while I was on radiotherapy. After the radiotherapy, the pain went away, and now it's back post-surgery, especially in the last 48-72 hours. Please, any advice would help. Thank you.
CrappyColon
Oct 27, 2023 5:16 pm
Reply to Yasmeen
Yasmeen, it's after hours where you are, right? If your pain is that bad, I would call whoever the doctor you have been seeing for the most recent therapies or go to an urgent care/emergency room. I can circle back with some ideas, but pain is our brain's way of telling us there's an issue somewhere.
