Pain

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Pyro
Posts: 89
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Pain

Postby Pyro » Wed Feb 27, 2019 7:04 pm

All

Thanks for looking, my name is Matt and I’ve been around a while, just started posting regularly again. I have a question for those of you with a permanent ostomy and all of the back door removed(anus). I am in constant pain back there, and it’s getting worse. I’ve been to specialist, I’ve asked my MD Anderson docs, I tried acupuncture through marijuana with fentanyl patches in between. If it breaks through everything I have, I’m gonna have to go to the ER! I’ve been told it’s scar tissue, and there isn’t much they can do. Does anyone else have this?

I start Keytruda on Monday.........
Aug 2015- Diag Stage 4 CC with mets to liver (38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not a surgery candidate for liver
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery, Dr. Vauthey
Mar 2016 -30% of left lobe removed, PVE
May 2016 - 70% of liver removed
Jun 2016-Radiation
Jan 2017-permanent colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Radiation
Mar 2019 - Keytruda, CEA @10

Lee
Posts: 5848
Joined: Sun Apr 16, 2006 4:09 pm

Re: Pain

Postby Lee » Wed Feb 27, 2019 9:12 pm

Hi Matt,

I have a permanent colostomy, my rectum was completely removed, (ie Barbie Butt). Do you have anything left back there? This was many years ago, a guy was diagnosed about 6 months prior to me, he too had pain there. Just wondering if there is a connection, guy wise. Can't remember if his rectum was removed. His name was Cancer Dad. He and communicated a few times on another forum, he was not here long. Sometimes I wish he was still here.

I will be honest, I had pain for up to 4 months following my surgery, felt like my tail bone was broken at it's worst. Butt it completely cleared up within 4 months following surgery. Once it healed I could sit on the hardest seat and be fine, am still that way today.

One thing that helped me then, was a yellow donut hole.

If it is scar tissue, why can't they remove it? I'm sorry you are dealing with this,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

Pyro
Posts: 89
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: Pain

Postby Pyro » Thu Feb 28, 2019 10:16 am

Thanks! What forum? I had my surgery, complete removal/nothing left, in Jan 2017 and the pain is from the last month or so. I do have a donut to sit on, doesn’t seem to help.
Aug 2015- Diag Stage 4 CC with mets to liver (38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not a surgery candidate for liver
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery, Dr. Vauthey
Mar 2016 -30% of left lobe removed, PVE
May 2016 - 70% of liver removed
Jun 2016-Radiation
Jan 2017-permanent colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Radiation
Mar 2019 - Keytruda, CEA @10

MissMolly
Posts: 614
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Pain

Postby MissMolly » Thu Feb 28, 2019 11:58 am

Pyro:
I have a permanent ileostomy with a “Barbie butt.”

Know that healing and recovery of the perianal wound and desensitization of local sensory nerves is a notoriously slow and prolonged process. 8-10 months for healing is not unheard of.

The “Barbie butt” and perianal wound area is suspect to post-operative pain and hypersensitivity owing to the vast sensory nerve innervation of the genital area. Simply put, there are a lot of sensory nerves that are affected by surgery to remove the rectum and anal sphincters and these nerves can remain irritated for a long time.

The male pelvis is smaller and narrower than the female pelvis, which can make sensory nerve pain more problematic for men following surgery.

Sensory nerve endings can also become embedded in scar tissue, which adds to a cycle of pain.

Sensory nerve pain, like other forms of neuropathic pain, often lessens with time and patience. It takes time to lower the threashold of nerve sensitivity. Medications such as neurotin, lyrics, or gabapentin may give you more relief than an opiate duragisc patch.

The pudendal nerve is also a possible source of your pain. Pudendal nerve entrapment or similar tethering to scar tissue would be a source of pelvic pain to discuss with your physician. Where the pudendal nerve is affected, local injections of lidocaine or a corticosteroid can often provide relief for 6-8 months. The area can be injected at intermittent intervals if initially helpful. Pelvic floor physical therapy can be useful for tissue mobilization and scar tissue softening. Surgery to excise scar tissue or reposition the pudendal nerve are additional measures when conservative treatment is insufficient.

A standard donut cushion can aggrivate perianal pain. A donut cushion encourages the buttocks cheeks to separate, placing tension on the perianal area and heightening nerve pain. A better choice is a 1-2” memory foam cushion with a posterior sacral/coccyx cutout (a horseshoe shaped cutout). A memory foam cushion with sacral cutout unweights the sensitive cauda equina nerve trunks and distributes even pressure across the buttocks without sprpeading of the butt cheeks. You can source a cushion on Amazon or from a home medical supply company. Do not get a cushion higher than 1-2” as a higher profile cushion negates the benefits that are being sought.

I am sorry that your back-end is causing you a high level of distress. My own backend healing was a long process with residual lingering pain, so I can empathize with your frustration.
Sensory nerve pain does usually diminish in intensity over time. Discuss with your physician any of the areas above that you feel might give you a helpful edge. There is no award given for suffering with pain.
Karen
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

Pyro
Posts: 89
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: Pain

Postby Pyro » Thu Feb 28, 2019 2:15 pm

Karen, you rock! My concern is the pain is new, 2 years after the surgery! I’ve had scans, surgeons and oncologists address it but they come up empty. I’m learning I pretty much had a pelvic rebuild, everything but urinary track that doesn’t seem to be working well lately. I’ll inquire about the injections, Never thought this would happen at 38.
Aug 2015- Diag Stage 4 CC with mets to liver (38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not a surgery candidate for liver
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery, Dr. Vauthey
Mar 2016 -30% of left lobe removed, PVE
May 2016 - 70% of liver removed
Jun 2016-Radiation
Jan 2017-permanent colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Radiation
Mar 2019 - Keytruda, CEA @10

MissMolly
Posts: 614
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Pain

Postby MissMolly » Thu Feb 28, 2019 2:59 pm

Pyro:
That your pain is new 2 years post radiation and surgery also brings to question effects to your hip joints or sacro-iliac joint as a root source of your pain.

Sacro-iliac dysfunction is a probable site of collateral damage from your prior radiation. The SI joint can be a source of intense refereed pelvic and coccyx pain. Adhesive capsulitis of the hips is also a source of referred pelvic/coccyx pain. Adhesive capsulitis of the hips can morph years after radiation therapy. The connective tissue of hip joint capsule becomes dense, tough and tacky/sticky.

Orthopedists are known to give only cursory evaluation to the sacro-iliac joint. The SI joint can be overlooked. You might Google “Sacro-iliac joint diagnosis” or “sacro-iliac joint as a source of pelvic pain” to see if what is described matches any your symptoms.

I would also Google “pedundal nerve entrapment” to see if what is described fits your symptoms.

Increasingly, it is incumbent on patients to research possible avenues to consider and present to our physicians in seeking an accurate diagnosis. You live in your body and know it best. Your description of symptoms to a physician is often key in arriving at a diagnosis.
Karen
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

Pyro
Posts: 89
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: Pain

Postby Pyro » Thu Feb 28, 2019 3:44 pm

Thanks you, gave me a lot to read. I can’t beat around the bush, the pain is exactly where my anus used to be. Dull and stinging pain.
Aug 2015- Diag Stage 4 CC with mets to liver (38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not a surgery candidate for liver
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery, Dr. Vauthey
Mar 2016 -30% of left lobe removed, PVE
May 2016 - 70% of liver removed
Jun 2016-Radiation
Jan 2017-permanent colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Radiation
Mar 2019 - Keytruda, CEA @10

MissMolly
Posts: 614
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Pain

Postby MissMolly » Thu Feb 28, 2019 5:25 pm

Pyro:
Last area of inquiry would be an abscess (retroperitoneal space) or bone marrow inflammation of the sacrum/coccyx. I gather you have had a CT scan or MRI and bloodwork to look for WBC coint and inflammatory markers. Sometimes it is useful to have a second radiology reading of CT scans.

I have a low pelvic abscess that periodically recurs (my immune system is tuckered out). A defined, strong, aching “butt hole” pain + pelvic pressure (feels like a full bladder) are early signs for me that the abscess is back.

That’s a wrap. That’s all I can think of.

I hope you are able to find relief to your back-end pain. Until someone experiences long-standing pain that never ends they cannot truly understand how exhausting and all-consuming pain can be. Pain that is ongoing can change the basic fabric of your sense of being. Any relief of pain is welcomed.
Karen
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

Lee
Posts: 5848
Joined: Sun Apr 16, 2006 4:09 pm

Re: Pain

Postby Lee » Thu Feb 28, 2019 7:45 pm

Pyro wrote:Thanks! What forum? .


This was sooo long ago, I think it's gone or merged with another forum. Cancer Dad was only here for a few months, his wife left him and I think his life went downhill after that. He was a good guy. Butt we always wondered why he lived with constant pain and I did not.

I think you have been given some great advice from Karen. My pain was my whole tail bone, very much an ache. Your pain sounds more pinpoint, anus and sting pain.

Good luck, pain is the worst.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

VeroMom
Posts: 5
Joined: Sun Feb 10, 2019 11:16 pm

Re: Pain

Postby VeroMom » Thu Mar 14, 2019 10:31 pm

Hi there! With regards to pudendal nerve intermittent injections, where do you get those done? Which type of doctor? Thanks for any help!


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