Anal/rectal & bowel spasms/cramps in anal cancer

Posted by kerryos @kerryos, Jan 18, 2023

Wow, that was one of the worst weeks for pain ever, & my treatment hasn't started yet. 4 days in bed with severe unrelieved abdominal pain using Panadol & endone, then nausea for 2 days at commencement of antibiotics for potential diverticulitis. Not eaten a meal in nearly a week. Day 7 today, abdominal pain easing & nausea gone, but anal rectal cramp/spasms every hour putting me in bed for half an hour. Has anyone had experience with this type of cramping? My anal tumour (5.8cm) runs from anal sphincter into rectum, & my symptoms have been changing rapidly. Due to start chemo/radiation as combined therapy in 11 days & wanted to be in optimal health to start, but that's gone out the window. How can I stop the cramping, will the pain go once I start treatment? Help

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So sorry to hear about the pain and terrible discomfort you have been experiencing. I had some really painful spasms at the beginning of chemo/radiation and the care team prescribed dicyclomine that seemed to really help. I echo the experience of folks here that chemo/radiation can powerfully shrink the tumor and create more comfort. Hopeful that this will be true for you too.

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@susanwatanabe

I went through the exact same thing last summer. My anal cancer was caused by HPV and was a squamous cell carcinoma. My tumor had grown to 7 cm by the time they started treatment. Since last summer, I've lost 46 pounds. Before treatment, I had to limit what I ate because I knew that what went in--must come out and it was so painful. During and after treatment, food tasted horrible and I couldn't eat much. I went through lots of Jello and yogurt.

Both of my oncologists at UC Davis told me they expected my treatment plan to completely kill the tumor. After one week of chemoradiation, I could feel that the tumor had shrunk, and most of the pain went away. My chemo consisted of fluorouracil-5 and mitomycin. I had 2 rounds of chemo and 30 external beam radiation treatments. At my last PET/CT scan 2 months after finishing my treatments, the tumor was MUCH smaller, and will continue to shrink over the next few months. They will be doing regular imaging to check my progress.

I'm not going to sugarcoat it--the treatments are brutal, especially towards the end. I've had recurrent bouts of diverticulitis requiring 2 antibiotics (Flagyl and Cipro) which really make me feel like crap. Also, I've needed two blood transfusions as my blood counts got very low--but I think that's to be expected. It's a long process, but I have every expectation of a complete cure, so that makes it worth it.

You can do this!

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Thank you for sharing all this with me. It’s been a rough few months. I am having my first scan after treatment on March 6th. I will get the results on the 8th. It’s been very stressful having to wait these few months. I had Mitomycin and Xeloda plus the radiation for 6 weeks. Mitomycin only once at the beginning of treatment. I had radiation enteritis for 2 months and now I have fecal incontinence. I’m hoping that too will go away soon. Otherwise, I feel better than I have in a year. I hope this is a good sign. I am so nervous about getting the results. Not knowing what’s ahead for me.

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@rioa21

Thank you for sharing all this with me. It’s been a rough few months. I am having my first scan after treatment on March 6th. I will get the results on the 8th. It’s been very stressful having to wait these few months. I had Mitomycin and Xeloda plus the radiation for 6 weeks. Mitomycin only once at the beginning of treatment. I had radiation enteritis for 2 months and now I have fecal incontinence. I’m hoping that too will go away soon. Otherwise, I feel better than I have in a year. I hope this is a good sign. I am so nervous about getting the results. Not knowing what’s ahead for me.

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Fingers crossed that you pet scan brings good news! I just saw my new GI doctor yesterday and my chief complaint is terrible pain in my intestines before a bowel movement. He ordered an urgent colonoscopy. Sometimes it hurts so bad that I feel nauseous. Your comment about having radiation enteritis made me google it and it sounds exactly like what I have. The pain isn't in my rectum, but higher up in my intestinal tract. Luckily, I don't have diarrhea now (I did in the beginning.) I guess I'll know more after my colonoscopy. Another irritating problem is that I now have a very small amount of urine leakage that I never had before--even after having 3 babies vaginally. Just enough to have to buy Poise liners. I'm also having anal bleeding that won't let up. I've had 2 blood transfusions and I may need another soon. My red and white blood cell counts and my platelets are chronically low. I saw a hematologist a couple of weeks ago and he's probably going to do a bone marrow biopsy in a March. The fun never ends!

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@susanwatanabe

Fingers crossed that you pet scan brings good news! I just saw my new GI doctor yesterday and my chief complaint is terrible pain in my intestines before a bowel movement. He ordered an urgent colonoscopy. Sometimes it hurts so bad that I feel nauseous. Your comment about having radiation enteritis made me google it and it sounds exactly like what I have. The pain isn't in my rectum, but higher up in my intestinal tract. Luckily, I don't have diarrhea now (I did in the beginning.) I guess I'll know more after my colonoscopy. Another irritating problem is that I now have a very small amount of urine leakage that I never had before--even after having 3 babies vaginally. Just enough to have to buy Poise liners. I'm also having anal bleeding that won't let up. I've had 2 blood transfusions and I may need another soon. My red and white blood cell counts and my platelets are chronically low. I saw a hematologist a couple of weeks ago and he's probably going to do a bone marrow biopsy in a March. The fun never ends!

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The radiation enteritis was awful. I too felt nauseous and would break out in a sweat from the pain. My poor husband was outside the bathroom door feeling so helpless. The gastroenterologist gave me Dicyclomine and it made a huge difference. The pain was gone. One day I woke up and the diarrhea was gone. Just like that. Now as I mentioned I have fecal incontinence. I am besides myself. I must go through 5 sanitary pads a day. I have completely lost control of my bowels. I’m hoping it will heal on its own. It’s just one thing after another.

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@rioa21

The radiation enteritis was awful. I too felt nauseous and would break out in a sweat from the pain. My poor husband was outside the bathroom door feeling so helpless. The gastroenterologist gave me Dicyclomine and it made a huge difference. The pain was gone. One day I woke up and the diarrhea was gone. Just like that. Now as I mentioned I have fecal incontinence. I am besides myself. I must go through 5 sanitary pads a day. I have completely lost control of my bowels. I’m hoping it will heal on its own. It’s just one thing after another.

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Oh my gosh--the fecal incontinence sounds horrible. I'm so sorry you're going through this. I sometimes wonder if it wouldn't be easier and less painful to have a colostomy bag. At least you don't have to worry about accidents. If my GI doctor suggests it, I won't fight him on it.

I thought I was the only one who broke out in a sweat when trying to have a painful bowel movement! I actually have to take my shirt off. Sometimes I feel like I might pass out. Cancer sucks!

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@susanwatanabe

Oh my gosh--the fecal incontinence sounds horrible. I'm so sorry you're going through this. I sometimes wonder if it wouldn't be easier and less painful to have a colostomy bag. At least you don't have to worry about accidents. If my GI doctor suggests it, I won't fight him on it.

I thought I was the only one who broke out in a sweat when trying to have a painful bowel movement! I actually have to take my shirt off. Sometimes I feel like I might pass out. Cancer sucks!

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I’m so sorry you’re going through all this. It is nice to have someone who understands.

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@rioa21

I’m so sorry you’re going through all this. It is nice to have someone who understands.

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Agreed! Because anal cancer is one of those "embarrassing" diseases, it's not something we can casually post on social media. If only Gardasil had been available when I was young, this could have been prevented. I made sure that my daughter and both of my sons were vaccinated, so they won't have to go through this.

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@susanwatanabe

I went through the exact same thing last summer. My anal cancer was caused by HPV and was a squamous cell carcinoma. My tumor had grown to 7 cm by the time they started treatment. Since last summer, I've lost 46 pounds. Before treatment, I had to limit what I ate because I knew that what went in--must come out and it was so painful. During and after treatment, food tasted horrible and I couldn't eat much. I went through lots of Jello and yogurt.

Both of my oncologists at UC Davis told me they expected my treatment plan to completely kill the tumor. After one week of chemoradiation, I could feel that the tumor had shrunk, and most of the pain went away. My chemo consisted of fluorouracil-5 and mitomycin. I had 2 rounds of chemo and 30 external beam radiation treatments. At my last PET/CT scan 2 months after finishing my treatments, the tumor was MUCH smaller, and will continue to shrink over the next few months. They will be doing regular imaging to check my progress.

I'm not going to sugarcoat it--the treatments are brutal, especially towards the end. I've had recurrent bouts of diverticulitis requiring 2 antibiotics (Flagyl and Cipro) which really make me feel like crap. Also, I've needed two blood transfusions as my blood counts got very low--but I think that's to be expected. It's a long process, but I have every expectation of a complete cure, so that makes it worth it.

You can do this!

Jump to this post

It’s reassuring to hear that someone else knows what I’m going through. Your journey is so familiar. I had one dose of Mitomycin on my first day of treatment. I took Xeloda in pill form 5 pills 2X a day eight hours apart. At the same time, I had radiation. Treatment lasted for 6 weeks. My tumor was about 3 inches in diameter. Treatment has reduced it to about 1 inch. I have had radiation enteritis and now fecal incontinence. I’ve recently had 2 colonoscopies 2 weeks apart. The first doctor could not get in due to anal stenosis. The second doctor was more experienced and used pediatric sized equipment and got in. The radiation has done so much damage. The incontinence is permanent and something I’ll have to live with. I tolerated the chemo very well. It’s a constant waiting game. Hopefully it will all be worth it in the end. I’m so sorry that you’ve had to go through all this. Thank you for sharing this. It helps to know I’m not alone.

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