Abdominal Pain and Stoma Discoloration Post-Colostomy

Hello, first-time post. First time using this website. I am 33, I have a colostomy (since January 2024) due to rectal cancer. I have been experiencing horrible abdominal pain to the point that I would rather not eat. Just above my stoma is constantly hard; I can push on it and make myself produce sometimes. My stoma turns dark colors and sucks in towards my stomach. I know you're not supposed to be able to "feel" it because there aren't any nerves, but it hurts to poo, regardless of consistency. Does anyone else have or have experienced this? Please help.

Welcome to the group.

It sounds like you should contact your ostomy nurse or surgeon. This could be a sign of something serious going on.

Agree with infinitycastle, you should make an appointment to meet your stoma nurse or surgeon and tell them about all the symptoms you are experiencing

Not normal. Immediately contact doctors or go to the hospital emergency room.

Your stoma is sucking in toward your stomach: Usually caused by too much tension on the intestine when pulled up to create the colostomy. Usually, as a stoma heals, the stoma shrinks a bit, usually the diameter.

Stoma changing color... not good. Could be inadequate blood flow, strangulation, or blockage.

This is speculation by me.

Immediately seek proper care. Do not go to an urgent care place. Hospital emergency room only.

Welcome to the group. How long has this pain been going on? Since January or is it a new occurrence? You should not be pushing on it in order to go. Make an appointment with your doctor to get to the bottom of this. Let us know when you find out. There is no need to be worrying, and all we can do is speculate. It could be a blockage or hernia. Take care and glad to have you here.

How to Get Back to Fitness After Ostomy Surgery with Ryan | Hollister

I recently went to a GI specialist and I am having a CT scan done on Thursday of my abdomen. I tried to mention these issues along with an entire list I had written out, but he cut me off and told me I need to contact my surgeon/ostomy nurse for anything stoma related. My ostomy nurse only really deals with skin issues around the stoma. I don't constantly push above my stoma to produce, but I am able to push there when I am very bloated/constipated. I have always assumed that meant I am dealing with blockages. I am waiting to hear back from my surgeon about the discoloration.  Thank you all!

If you had said pain only, I'd say you're partially blocked, but the discoloration may mean there's more to it. My stomach hurts horribly when I get backed up, then I get a bunch of output and it's instant relief. But I have no discoloration.

I'm glad you are having the CT, and hopefully the surgeon will have some answers.  Could you request to have him look at it?  Please do let us know how it turns out.  Good luck.

Terry

Hi Grateful,

  First off.......your "GI Specialist" is an ass.  He should be working in concert with your surgeon to find the root of your problem, not dumping it off on him because you have a stoma.  Surgeons don't diagnose GI problems, your Gastro does.  The surgeon is responsible for the surgical solution, if that's called for.  Once you get your scan the Radiologist should send the findings to your Gastro, who should consult with your surgeon on the best path forward.  

  Obviously the color change and the retraction of your stoma aren't good things, but I won't speculate as to what's going on........the scan should make that pretty clear.  I will say you're a bit off about the stoma not having nerves...........it's literally packed with nerves, but they're only triggered when your intestine gets close to it's expansion limits.  Your bowels are part of your Enteric nervous system, which is a huge network of nerves embedded within the walls of the digestive tract.  There are more neurons in the gastrointestinal tract than in your spinal cord.  So you have a very complex and sensitive nervous system in your gut.........and it will let you know when something is wrong, like in your case.  

  If I were you I'd lose your "GI Specialist" and find a better one.  And if it's not really possible now due to the immediacy of your issue.........at least get a second opinion before they start cutting.  Let us know how your scan goes!

;O)

Hi Gratefulk, welcome to the site. I agree with Bob; you need a different gastro. When I had resection surgery and follow-up, my gastro did scopes and sent pics to the surgeon. That kind of collaboration gave me confidence in the health care I was getting. Good luck.

Totally agree with suggestions by Bob and Ron. If you haven't discovered this yet, you will soon enough...bad doctors/surgeons etc are a dime a dozen. Some are bad because they simply don't care, others because they take on too many patients and don't have the time and still others are just outright bad at their profession. When you find a good one, and they are out there, you will know it!

My surgeon (surgical team) left a sponge in me. Discovered 6 months post surgery, I lost another section of colon which became badly infected as the sponge had attached itself to that section. From day one, I never felt right after the surgery but we are programmed to listen to what doctors tell us and they all said everything is fine. Even my wife with a nursing background told me to man up lol. Was in so much pain one night I drove myself to the emergency room and a single x-ray revealed the foreign object.

Your comment about making yourself produce output by pushing above your stoma struck a chord with me because often I am able to do the same by pressing anywhere from the 10:00 to 2:00 position. My stoma has not however had the discoloration you mentioned. The horrible abdominal pain you spoke of is also something I experienced for at least 6 months following that 2nd surgery. G.I. doctors told me it was likely adhesions/scar tissue and that certainly makes sense. About 2 years ago I began experiencing total blockages about every 3 months. My body's response to the blockage was 100% total shutdown. It would take 8-12 hours of throwing up until the brain would finally give my bowels the OK to go ahead. Once things began to move I would feel nearly normal within an hour. Now I'm so vigilant about it that I can recognize the early signs and reverse it before I become totally blocked. As you go forward with your "new body," remember that you are your own best doctor. Pay attention to how your body reacts to what you put in it!

I hope your surgeon comes up with the right answers for you and gets your issues resolved. And don't be afraid to be a total bitch when you step into a doctors office. Don't downplay anything. It's unfortunate but the squeaky wheel does tend to get the grease; make them raise their eyebrows!!

Unrelated to your issues, I noticed you are a blacksmith by trade. I've worked with horses for nearly 50 years now. Do you hot shoe horses?

A sponge was left in you?!  Wow.  Surgeons and staff are supposed to maintain a strict count of all items used during an operation.  What a tale of malpractice.

Thanks for sharing your story. 

You're assuming they know how to count.  Big mistake.

;O)

;o)

I was a farrier before being diagnosed with cancer. I had to stop working under horses when my IV chemo started. But, hell yes, hot fit all the way! Do you still work on horses with a stoma? I'm terrified I won't be able to return to shoeing, if and when my body regains strength.

That's awful, I'm so sorry you had to deal with that!

You can do anything you want to! If, at just 100 lbs, I can walk my 60 lb dog, you can do what you want. One doctor told me to get rid of my dog. "He's too big for you." I got rid of the doctor. 😁 Still walking my dog, a little slower, teaching him not to pull, but still doing it. He loves the way I smell too.

Do what you want, with caution. I do.

I can relate. I have a 160lb Great Dane and I'm 120 on a good day. ;)

I appreciate the "you can do anything" mentality, but I feel seriously robbed of what I was capable of before this. I realize it takes time, but I feel weak and tired all the time, and pain is just somehow a normal thing now?

Everything will come back; it may not be the same, we go 2 miles instead of 4, and I need a nap afterward, but it's a walk. Never give up!

True... they are wearing gloves, so counting of fingers can get confusing.

Hi G,

  You should be able to return to shoeing without any problem.  Just make sure you wear a stoma guard, as getting kicked in the stoma without it will really ruin your day.  My horses never needed shoes, as I kept them on my farm on dirt all the time, but I trimmed their hooves every couple of weeks without any issues.  You'll find having a stoma is just a minor inconvenience, nothing more.  

;O)

It does take a long time.  I'm now 18 months post op from getting a colostomy.  Took 3 months to walk normally again.  I fell a couple of times, (painful as hell).  Had some balance trouble.  At 7 months, my hair fell out in clumps.  Doctor told me it was post Sepsis syndrome.  A couple of months later it began to grow back.  Then the skin on my face started peeling off, leaving large red irritation patches.  Sepsis syndrome again.  Damn.  After 3 months, it slowly got better.  

For that last 5 months I've gained weight, started bike riding.  Feel normal again.  Just got the bag to deal with.  Which is easy.  I'm so used to it now.

In 2003 I underwent aggressive IV chemo for stage 4 thyroid cancer.  Lost all my hair.. the usual side effects.  After final infusion, I developed Neutropenic fever.  My white blood cell count went wayyyy down.  I spent several days in isolation at the hospital.  Took about 4 months to get over the chemo induced fatigue.  

So, hang in there.  You've suffered alot.  Take your time with recovery.  

Like kittybou said: Things might be a little different.  Never give up.

Listen young lady, you can and you will get back to being a farrier if that's what you love doing. Once your stoma situation gets straightened away and you get your strength back, there is nothing physically preventing you from doing what you once did. Trimming the foot, hammering on the anvil, tacking it on etc., all tasks where your stoma/bag are not going to get in your way.

I 'm 66 y-o and I take care of 6 retired horses by myself on a couple's 30 acre farm. I muck all the stalls, hay, water, turn-out, bring in, bathing, full body clipping, clean sheaths, wrap feet, legs, groom etc, etc. You know the work involved I'm sure. Your biggest worry will be getting good adhesion on your wafer in the heat of the summer when you know you'll be working up a good sweat on your 2nd or 3rd horse. Lucky for you the "heat" up there in Maine is only from mid June 'till mid August. I know because I'm originally from Montreal.

Let your clients know you'll be back. Good luck!!

After multiple scans and multiple trips to the ER, doctors still cannot find an obvious reason for my pain. No blockages, no narrowing, no hernia. My surgeon gave me the option to operate again to widen the stoma opening if I continue to have problems; otherwise, the pain is just due to scarring from chemo/radiation and surgery. My "GI Specialist," whom I previously mentioned, put me on a medication without discussing side effects, which gave me severe diarrhea that put me in the hospital. As I wait to be referred to a different GI doctor, I have been relegated to the "pain management" section of the hospital, otherwise known as end-of-life services. Basically, they don't know what to do with me, so they just listen to me talk about how this is not quality of life for me and how my life revolves around my ostomy and my pain.

If you're not getting better... go for exploratory surgery.

Back during my medical adventure, I was suffering from Sepsis, Peritonitis, and C Diff. I had multiple CT scans, sonograms, and X-rays. They revealed I had a pocket of infection in my abdomen, but nothing looked amiss. Doctors were perplexed. Heavy-duty antibiotics for 4 weeks were ineffective. Finally, the abdominal pain was so bad, I could hardly talk or move easily. My medical team came in. They told me I couldn't continue.

I had undergone 46 rounds of radiation therapy for prostate cancer a couple of months prior to getting sick. I was told I couldn't have surgery around my lower abdomen due to permanent radiation-induced tissue damage, which affected healing.

After doctors told me I couldn't continue, they recommended exploratory surgery. I reminded them about the radiation treatment. I had no choice, surgery, or die.

Surgery revealed inguinal hernia repair mesh had migrated into my colon, covering it, and puncturing it in two places. Another piece of mesh adhered to my bladder. None of this was visible from all the various scans I had.

I did have a hard time healing... but did heal eventually and fully recover... with a permanent colostomy.

This advice... or suggestion may seem way off base... but I'm sharing and hope it doesn't come back and bite me... on my... front butt...

Cannabis gummies. CBD with very low THC... for pain management.

My pain is related to Crohn's disease as arthritic Crohn's colitis. (Yeah, I never heard of that before). Today, I'm trying it out to limit pain in fingers, hands, and wrist, first time. In your home state, you might find a dispensary nearby. You do as I did, explain the pain and a certified, trained person will tell you what's available. The THC level is the component (buzz) of how "high" you would get, so a low dosage, which is 1mg, might suffice without the buzz.

I'm learning here about it - do bear with me...

My rheumo suggested I see a "special doctor" to get a medical card, but also... yes also told me first go to the dispensary. See what they can offer you over the counter. What? A medical doctor suggesting pot? I'm in! 😁 But joking aside, it's too early for me to say this works.

I asked this salesman, what frequency do I take each gummy?

He said whenever you feel the pain return. Hmm. So, a bit of friendly advice to control pain?

Your call.

I will let you know if it works for me. Pain sucks.

Meds didn't work. Biologicals didn't work... Ttyl.

Dammit grateful, something isn't right. If your G.I. physician were on the right track, this thing would have resolved by now. Instead, your condition has worsened, and now medication-triggered diarrhea to boot! A different G.I. doctor means a different set of eyes, and that's always a good thing. Beachboy and warrior have both offered up reasonable suggestions.

You are, through any of this, your own best doctor. What are your instincts telling you? Is it pain from scar tissue, or is the pain far more severe? Take an accurate stock of what has happened and when. Take nothing and no doctor for granted. As Beachboy has related through his own adventure, there's often a raging inferno behind the smoke.

After my initial surgery, I felt like crap. After 2 days of feeling like crap, the doctor sent me down for x-rays. "Everything looks good, I'm sending you home today," he said. My wife (with a nursing background) said, "You had major surgery, you're going to feel like crap!" After continuing to feel like crap for months and my wife telling me to "just man up," I woke up at 4:00 AM one morning feeling so ill, I drove myself to a nearby E.R. Forty-five minutes later, an anxious-looking E.R. doctor told me, "You have a foreign object in you, and we're trying to contact your surgeon." I insisted on seeing the x-ray, and sure enough, there it was, plain as day—a surgical sponge with a little numbered/lettered tag on it. By noon, I was in emergency surgery removing the sponge and, of course, a bunch of diseased colon it had attached to by then...producing 4 different types of infection.

Rushed and poorly staffed surgical teams fail patients more often than you think each and every year. Are there exceptional teams out there? You bet there are, and as a patient, you can only hope that you are fortunate enough to have one of those teams present during your surgery.

My farrier friend, I don't know what the answer is for you personally. Take stock of what has happened. What do you think is going on? You have no medical background, but what you do have is personal knowledge of your pain and your own body. Trust your own instincts. And don't be so kind to your new doctor(s). Don't be afraid to scream at them, make them feel your pain and frustration so they know it's real.

Good luck and keep us current if you can.

I am totally amazed a sponge was overlooked during your surgery.

I used to build satellites.  And like surgeons, we followed very strict protocols and rules concerning tools and hardware.  We underwent extensive training and had to be certified for every little task.  We also had quality control technicians watching our every move, and a photographer took pictures of us as we worked.   And yet still... nuts, bolts, tools, still got left in the satellite.  Why?  Some people are careful, others careless.  Affects every occupation.  Losing a nut in a satellite could cause minor damage or catastrophic failure.  I've witnessed both.

A surgical sponge left in a patient!?  Whoa!  And you had to have surgery to get it out and lost more intestine because of it!?  Whoa!  

Big advocate of medical marijuana. I used it heavily throughout my treatments in the form of RSO (Rick Simpson Oil). I tell all my doctors that it was the only thing that helped me maintain weight, get adequate sleep, and reduce the pain and nausea. I have backed off the large dose that I was taking for over a year, but I still consume cannabis daily.

As you said my friend, some people are careful, others careless. But beyond that, these surgeons (and surgical teams) are stretched pretty thin. They shouldn't be, but sometimes are thinking about their next surgery, or their divorce, or...humans make mistakes.

The worst part of this whole thing was that for two days after my initial surgery, I felt like crap, like my brain was telling me something is wrong. You know, you experienced it yourself with your hernia mesh migrating into your colon. After going down for 45 minutes of x-rays on day 2, the surgeon comes into my room mid-afternoon and tells me the x-rays are all clean and "we're discharging you tonight." So, one of 3 possible scenarios played out... 1.-surgeon never looked at the pics. 2.-both surgeon and x-ray tech never looked at the pics. 3.-tech looked at the pics, brought it to the surgeon's attention and the surgeon decided to "roll the dice." 

All three scenarios are sickening when you think about it. Fast forward six months later and I'm in a horrible state in an Emergency Clinic 5 minutes from my home, waiting for the ER doctor to look at the x-rays they just took. He comes back into my room (about 5:00 a.m. by now) and says "there's a foreign object in you and we're trying to contact your surgeon, you'll need emergency surgery." As I was someone else's mistake, they couldn't get rid of me fast enough -while I still had a pulse. I told the doctor I wasn't going anywhere until I had my x-rays in hand. Inside of 10 minutes my pics were in a brown envelope and I was inside the ambulance headed for the hospital (20 minutes away) where I had the original surgery. On the ride over I looked at the pics; plain as day. You could've showed it to an 8 y-o child and they'd have said "what's that thing?"

Hey, your satellite building story is fascinating!