Is It Normal to Feel Burning and Pressure After Colostomy Surgery?

Replies
10
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158
Ethelisme2
May 07, 2024 2:01 am

I had surgery at the end of November 2023 to create a colostomy and Barbie butt due to colorectal cancer. The rectum and half of the sigmoid colon were removed. Healing was slow, and even now, five months post-surgery, I cannot sit straight down on my bottom for an extended amount of time due to discomfort and my bottom going numb. My question is this: is it normal to have a burning sensation and pressure where the rectal opening used to be? I have asked my surgeon and my oncologist, and neither could answer the question. They both kind of blew me off. Am I imagining this, or have others had this issue?

warrior
May 07, 2024 8:44 am

Both your doctors could not answer your question?

That alone is very tempting to assault their experience and character.

Anyone else wanna call them both a douche? This really bugs me. Them blowing you off like that means it's time to blow them off.

They lack experience. I would tell them that upon saying goodbye.

Think of any other professional doing this to you. Would you keep them? Continue business?

Fudge that noise.

Sitting will be difficult. At least several months... normal.

But the burning? Something isn't right there.

I am an ileo 7 years now with recent ken butt.

I have had leaks from it but no burning.

Hoping others here will chime in to give you reason to find experienced doctors. And an answer.

Welcome. And good luck. Don't settle for no answer!

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Ethelisme2
May 07, 2024 1:42 pm
Reply to warrior

Thanks, Warrior... My oncologist's answer was, "That is beyond my scope of expertise, and something you would need to discuss with your surgeon," which I fully understand. Her answer, but when I asked the surgeon about it, he said that it was normal, "nerves regenerating," but I personally do not think that is the issue. I am not comfortable with him and am going to look for another doctor, but am unsure what type of doctor. Would I look for another colorectal surgeon?

AlexT
May 07, 2024 2:04 pm

After 3 years, there are certain things/angles I cannot sit on for more than a few seconds. Other things I can sit on all day with no issues. Remember, 99.9% of doctors/nurses haven't gone through what you have; their information is second only.

aTraveler
May 07, 2024 3:23 pm

Alex is correct. Surgeons can explain the technical aspects of your surgery but are not very good with the day-to-day life experience of living after the surgery. In this case, probably the best he can do is order a CT scan to see if everything looks normal. Once the surgery is done, the surgeon turns you over to the nurses for assistance with healing. You need to seek out an experienced wound/ostomy nurse — they have the experience, and many times the surgeons even consult with them for their expertise.

 
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MBT
May 08, 2024 1:07 am

I experienced what you're describing, a burning sensation that was more intense at night. It is a type of neuropathy related to the disruption of perianal nerves. I talked to my surgeon and he was not surprised that I was experiencing neuropathy. He said that I could expect the burning/pin-and-needles sensation to resolve within 6 months, but that I could try medication (gabapentin) if I wanted to. Mine went away within about 6 weeks, which was long before gabapentin was likely to have been much benefit. Everyone's post-operative experience is different. I still occasionally have a single nerve fire up, but nothing like that first 6 weeks.

aTraveler
May 08, 2024 1:30 am
Reply to MBT

Very informative reading this, it makes perfect sense. I have severe nerve damage in my hands due to a neck injury from an auto accident. The thing about nerve regeneration is that they don't always regenerate. My surgeon told me it would take about 3 months for the nerves to regenerate. After that didn't happen, I was advised to wait 6 months, and if they hadn't regenerated by then, they never would. They never did. I now take 900 mg of Gabapentin 4 times a day — it doesn't stop the pain, only makes it bearable. You are blessed, MBT, to recover in 6 weeks. Praying Ethel will see some relief soon.

MBT
May 08, 2024 2:16 am
Reply to aTraveler

A traveler: It's so true that we cannot anticipate nerve regeneration, when and how much. Nerves are amazing, crazy, and sometimes frustrating. Sorry to hear that you're having such a rough time of it.

AlexT
May 08, 2024 2:54 am
Reply to MBT

I have neuropathy in my feet caused by chemotherapy. My oncologist said I could try gabapentin. I said, "Will it cure it?" She said, "Probably not, but it may lessen the symptoms. My feet tingle like they're asleep 24/7." I said, "No thanks, I can tolerate it, and I don't like taking drugs to just hide symptoms." As far as issues from surgical nerve damage from being cut in half, yep, that took quite a while to start feeling things again.

warrior
May 09, 2024 3:14 am
Reply to Ethelisme2

I think we both got schooled here...

Your oncologist's answer was correct. Outside his field. Wrong doctor to ask.

Your surgeon was correct. He just didn't give you more comfort knowing how nerves regenerate. Or why it's happening. Didn't elaborate.

Because you felt unsatisfied, you doubted them. You felt unfulfilled. Rightly so.

That's why you are here. You read from a member about neuropathy.

Makes perfect sense now, right?

Doctors still can be douches blowing you off.

You come here, ask... we got the answers...

DebinRI
May 09, 2024 11:03 am
Reply to Ethelisme2

I would definitely look into a colorectal specialist for a consult. This is a specialized field. It is too bad that your surgeon cannot help with answers to your discomfort. I am also at odds with my surgeon of 17 months out. My GI specialist offers me more support and answers to my issues. Wishing you helpful advice from a different provider!