Rectal or Colon Spasms (very painful!!!)

Northwoodsgirl

It has been about one year since I finished treatment. I had taxol and carbo and radiation both external and brachytherapy internally.
Last December shortly before my last chemo I had my first "attack" of what I would describe as having a rectal spasm or colon spasm.
The pain starts out tolerable and then escalates to unbearable and lasted about 30 minutes and the pain was a 10. I almost called 911.
Within 2 days of my 3 month check up ( which included a digital rectal exam) this pain came back. I told my gyn onc about it and she didn't seem to know what it was.
Since then I have had another 4 attacks and just recently again told the nurse practitioner about it and have an appointment with colo-rectal surgeon ( she had done my post treatment colonoscopy- ok except for a flat non cancerous polyp which was removed). Has anyone experienced this type of attack?
It doesn't seem to be related to eating or bowel habits.
The pain will come on even when I am sleeping. It is so intense that I can't even stand as I get faint and the only relief I get is by deep breathing and moaning in pain and praying for the 30 minutes to an hour to pass.
I think it is damage to my vagal nerve or something due to radiation.
Thank you for any experience or reading you have done on this topic.
Lori

fuzzytrouble

Lori, so sorry you are having problems with those cramps they are no fun. I know what you are talking about, when I feel them coming on I cringe at the thought of the pain. I call them Charley horse bum cramps. I don't know what causes them either except that I have neuropathy and I do think it's something with the nerves. Mine last about 15 min. but not as long as yours. I laid off all the fiber I was eating to a lower residue and I haven't had a attack in a long time. I also had radiation in the pelvic area so who knows what is causing it. I hope they go away, but you are not alone. I feel like I need to go to the bathroom when I get them, do you feel the same way?
Hugs from Oregon

Northwoodsgirl

fuzzytrouble said:

Lori, so sorry you are having problems with those cramps they are no fun. I know what you are talking about, when I feel them coming on I cringe at the thought of the pain. I call them Charley horse bum cramps. I don't know what causes them either except that I have neuropathy and I do think it's something with the nerves. Mine last about 15 min. but not as long as yours. I laid off all the fiber I was eating to a lower residue and I haven't had a attack in a long time. I also had radiation in the pelvic area so who knows what is causing it. I hope they go away, but you are not alone. I feel like I need to go to the bathroom when I get them, do you feel the same way?
Hugs from Oregon

Thank you so much for your response. I feel intense pressure/pain but I don't actually have to have a bowel movement but when it starts it sort of feels like that pressure. Something tells me that it is dietary related like too much fiber or something but I definately feel it is nerve damage. I do have neuropathy in both of my feet also. It is just so unpredictable. I don't know what I would do if I got an attack at work--I would have to find someplace to lay down until it passed. I am happy to be NED and alive but I sure am not the same person physically. Thanks again for your reply to my inquiry. I am going the colon rectal surgeon and maybe be sent to a pelvic floor clinic at the UofMN.
One of the nurses I talked to said that I may need to work on some biofeedback to control it if it is related to the vegal nerve. Hope you are doing well. Maybe the attacks will lessen over time. All the best from Minnesota!

Kaleena

Northwoodsgirl said:

Thank you so much for your response. I feel intense pressure/pain but I don't actually have to have a bowel movement but when it starts it sort of feels like that pressure. Something tells me that it is dietary related like too much fiber or something but I definately feel it is nerve damage. I do have neuropathy in both of my feet also. It is just so unpredictable. I don't know what I would do if I got an attack at work--I would have to find someplace to lay down until it passed. I am happy to be NED and alive but I sure am not the same person physically. Thanks again for your reply to my inquiry. I am going the colon rectal surgeon and maybe be sent to a pelvic floor clinic at the UofMN.
One of the nurses I talked to said that I may need to work on some biofeedback to control it if it is related to the vegal nerve. Hope you are doing well. Maybe the attacks will lessen over time. All the best from Minnesota!

Lori,
Did you have a
Lori,

Did you have a hysterectomy? Also, when was your last CT or PET scan?

I know the pain you are experiencing. I had it last 30 minutes too. When the symptoms come on, its already too late to take a strong pain medicine. You almost feel like you are going to pass out.

I always have problems with scarring. Do you think it could be scar tissue?

I hope your attacks are few and far between and lessen each time.

Kathy

lauraeburnette

Colon/Rectal Spasms

I have had radioactive iodine, or RAI 5 times for thyroid cancer.  I never had these spasms before then, and also developed a gluten sensitivity....part of it, I think.  I used some under the tongue drops called Hyoscyamine Sulfate.  They work great.  Blessings to you, and to all of us, in our journies.  Hope this helps.

lkchapman

proctalgia fugax

Hi Lori,

I have had these episodes since I turned about 40 and I call them **** cramps!  The pain is actually called proctalgia fugax and for me it really got bad during and right after radiation. It's a benign condition but boy it sure is painful and has a tendency to wake you out of a sound sleep. My aunt sent out a family email asking if any in our family had the same symptoms and oddly enough many of my cousins have the same problem. I believe it must run in families.  I have found that sitting on the toilet and pushing as if I am having a bowel movement helps to relieve some of the pain. I think what is happening is the anal sphinter that normally remains closed spasms open. You might google the condition for more info.

Hang in there.

Laura

ptbradford

here is what it is called tenesmus. When it happens to me my nervous system shuts my body down and drives my blood pressure down and if I'm standing I will black out. So he told me to,lay down and endure the pain and it will pass. My pain stays for about 5 minutes. I just came out of emergency because I blacked out, the doctor that helped me happened to have the same problem and he explained it to me and he said it's not curable but manageable if I just lay down when it happens and wait until the pain goes away.

hopefully this is helpful to everyone.

 

flyerette65

ptbradford said:

here is what it is called tenesmus. When it happens to me my nervous system shuts my body down and drives my blood pressure down and if I'm standing I will black out. So he told me to,lay down and endure the pain and it will pass. My pain stays for about 5 minutes. I just came out of emergency because I blacked out, the doctor that helped me happened to have the same problem and he explained it to me and he said it's not curable but manageable if I just lay down when it happens and wait until the pain goes away.

hopefully this is helpful to everyone.

 

Internal Spasms and Pelvic Floor Disorder

I started having similar pains about 6 months after my radical hysterectomy.  My oncologist and his team attributed them to everything from me doing too much exercise, my Pilates Class to a rectocele.  The spasms feel like you are about to give birth to a 30 pound baby.  Mine are usually not associated with a b.m.  Sometimes it would hurt so badly I'd have to get in a tub of warm water to try to make it feel better.  I think, 3 1/2 years after my hysterectomy that we have finally hit on what's really causing the problem.  I started going to a physical therapist for sciatica.  On my second visit she was poking around my pubic area and had me do some Kegels.  She said I think you have pelvic floor issues.  When I asked you to do a Kegel, you are all ready contracted on the right side so she referred me to a physical therapist who specializes in pelvic floor disorder.  They confirmed that I do indeed have issues, brought on by my radical hysterectomy so I am going once a week for pelvic floor therapy.  It was not quite what I was expecting it to be as it is like having an extremely extended internal pelvic exam, however, it's helping and if I can avoid surgery then I'll submit! Men can be affected by pelvic floor disorder also.  The uro-gynecologists are aware of pelvic floor disorder but my gynecologist/oncologist doesn't seem to be.  I will have to enlighten them when I go back in a couple of weeks!