Unusual Symptoms After Colostomy: Seeking Advice

Hi everyone. I had chips (if you're not in the UK like me, you might call them fries) at the weekend; my stoma didn't like them at all. It was the first time it had issues since my colostomy in May. It was working, but you could almost have imagined it panting with the effort to get things moving and away. The output felt through the bag had hard and scratchy, twiggy bits in amongst less concerning output. Definitely bits of chips. I'd chewed them when eating, more than in the past, as you should, so I was a little frustrated.

I resorted to lactolase on Sunday and used a hot water bottle to relax a very painful area some way below my stoma. I didn't think it was adhesions, as there's been no indication of those before now, and I was told by the nurse on Monday that they usually make themselves known earlier. I've no sign of a parastomal hernia forming. It's not a blockage, as my stoma output was back to normal for me on Monday, silent in operation and often unnoticed. It's rare I have any wind. The pain had lessened to a bruised feeling.

From Tuesday onwards, I've felt that bruised feeling move almost in a line upwards, closer to my stoma. I imagined my pipework shunting something along to get it out of me. The nurse thought this was likely to be what was happening, but that I shouldn't be able to feel the transit motion. I said that can't be right with me; I've often felt things inside when I've had bowel difficulties my whole life.

My body obviously didn't read the manual that said I've no feeling inside my intestines. Anyway, the pain has gradually gotten better, but I'm seeing the GP today because, as of this morning, I've got a feeling like hard muscle just above the entire pubic area, slightly painful, a little swollen, eases with heat but already a bit warm. This is not where the other business was going on.

I have an inguinal hernia, to the left of the groin, caused during my diverticulitis mega-flare from December that led to my colostomy, which also involved separation of the bladder from the sigmoid colon and rectum. My GP thinks it was likely my intestines were so inflamed that they pushed up and made the hernia.

Since my surgery, the hernia hasn't bothered me. And the transit pain I've had this week wasn't like what's now happening above the groin, which isn't near where I've previously had discomfort with the inguinal hernia. I figured the removal of the intestine that was in the area of the hernia meant it wasn't getting poked anymore from below. Most of my large bowel had to go.

My stoma appears healthy. I continue to lose weight since my surgery, currently at 12st 2lbs from a starting point of 14st 4lbs. I am eating and having to eat stuff I'm not fond of, more fatty, with things like chocolate and cakes. Nothing is stopping the weight freefall. Absolutely no signs of cancer in testing the removed bio material.

I'm mystified. I'm hoping my GP won't be when I get to speak to them today. I've read you can get an infection following abdominal surgery in the actual bones above the pubic area. I had an infection in my wound site two weeks after the operation and had to go back in the hospital for a week. I'm still getting the wound packed, and that's about four inches directly above this morning's tender, slightly swollen area. The wound has healed well, and there's no indication of reinfection there. Does anyone have any idea as to what might be going on, please?

Hi 606,

Anyone suggesting they know what's going on with you would just be guessing, so I wouldn't put too much faith in that. You need your doc to check you out… it's really that simple. I'll throw out a few thoughts for you to ponder, but I'm not going to connect any dots.

You mentioned you're finding undigested bits of chips in your output and your weight is dropping. Those two things typically mean your bowels aren't absorbing properly. Usually, when that occurs, it's because the lining of your small bowel is inflamed or diseased.

When you feel pain (from your bowels, which I'm not saying it's from), it's usually because the bowels have stretched beyond their normal amount or the lining has been damaged to the point where the bowel wall is very thin… as happens in Crohn's, etc. So your nurse is right in that under normal conditions you don't feel pain from your bowels when things are normal. Only when they're not.

You mentioned you had diverticulitis in your colon prior. It also can affect the small bowel, and I'm sure you know the symptoms… possible perforation, abscess formation, and partial or full obstruction. You also mentioned there were no signs of cancer in testing the removed bio material. That just means there's no cancer in what they tested, not the rest of you. You need blood work for that, and I'm sure your doc will order it. An infection in a wound can spread, so no infection at the wound site doesn't mean you don't have one. Again, another easy thing to test for.

So there's a myriad of possibilities as well as lots of others not mentioned. A CT or MRI would be my guess as to what you're in for, and a quick scoping of your stoma sure wouldn't hurt either. I wouldn't try to figure it out without more info, as you'll drive yourself nuts thinking about it. It should be pretty easy for your doc to get to the bottom of what's going on. Hopefully, it's nothing major… so let us know how you make out.

;O)

Let us know the outcome after seeing your doctor.

IGGIE

Potatoes are the one and only thing that I've found that will slow my output. I tend towards highly liquid, so slow for me is still soft by anyone else's standards. If you were a normal consistency to start with and had the same reaction to potatoes, it would explain the initial symptoms.

However, everything after that is a mystery. I'm glad you're seeing your doctor.

What did your GP and consultant say about weight loss, and what are they doing to investigate it to see what, if anything, is going on? It could have just been one of those days, as I call them, when you eat chips. We all get them at times for no apparent reason. The stoma either goes on a go-slow or the opposite way. Has the consultant ever said anything about you having scar tissue?

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I am glad that you're seeing the Dr. You have gone through enough.

You are dealing with a pretty complicated situation, and I hope you get some answers. It is quite common for potatoes to thicken or slow down output. Something to be aware of in the future. Good luck, and let us know how things turn out.

Terry

Hi, your inguinal hernia is an entirely separate thing from your bowel inflammation/diverticulitis, and it is a bit worrying that your GP told you as much. The only relationship between the two would be straining due to constipation being a cause. I would request an ultrasound. Hoping you feel better either way.

Hi everyone. My GP visit was confusing. He checked me over and said it doesn't feel like I've got an inguinal hernia and there don't appear to be any anywhere else. This shocked me as I've previously had a diagnosis of an inguinal hernia given at the hospital by the surgeon who would go on to do my bowel resection five months later; the diagnosis was confirmed by a GP at the same practice I saw the one at most recently; and I was sent to a hernia surgeon who also confirmed it!

All physically examined me, but so did the most recent GP. I was about to be booked in for it to be operated on when my bowel resection appointment came through, so the hernia operation was shelved. I did mention I'd had no pain with the inguinal hernia from the day of my bowel resection. I theorized to myself that might be because there's no intestine in that area anymore to push up and cause the pain. Still, I know hernias don't heal themselves.

I'm feeling a lot better and my stoma has recovered its usual speed of transit and general operational stealth. I rarely know when it's active. I also get wind rarely; I think it's mostly when I'm asleep. It's been a week since I had the chips, and it took until Friday to settle. I've still got some pain in the pubic area, though, but it hasn't gotten any worse, and some days it's better than others.

As well as the tissue removed being tested, I've had blood tests before my surgery that gave no suggestion of cancer. My FIT was very high prior to surgery, as was my calprotectin. I've had no visible evidence of blood in my output to date. That wasn't the case for five months before my surgery.

The surgeon told me I won't get diverticulitis again because he removed all the areas where diverticular disease appears. It was "the most extreme case of diverticular disease" he said he'd ever seen. I was under a lot of stress in my home life almost every day for three years, which I'm sure had a significant impact.

I also have Mixed Anxiety and Depressive Disorder, which is currently majorly affecting me, as is my fibromyalgia. These, the (now over) relationship trauma, and my post-surgery recovery, I couldn't say which or all of them have caused my currently intense chronic fatigue, which is definitely my most disabling and inhibiting issue right now. My hunch is all the life-changing traumas coming together have swamped me and made all the conditions ramp up.

I suspect the extent of removal is why my output is 'almost' like that described with ileostomies. It's also behind my difficulty in maintaining weight, I think. I just don't have enough of the large bowel left to extract all the stuff from my food before it's out and away. I don't have the hydration problems I've seen others describe, but then, I've long drunk more than two liters of fluids a day.

I'll have to see the GP again next week, but he's not worried about my weight loss until and if I get down to 10st 4lb. Below that, I'll be officially underweight, apparently. I know I'll be a twig if I get down to that. My concerns are the pubic pain and the fact that I'm feeling assailed by life-changing and traumatic events this year.

I don't recognize myself sometimes with my withdrawn shyness, reduced confidence, and lean appearance. Of course, I'm too unwell to build my business or a new single life, so I'm lonely and frustrated. With the chronic fatigue, I think I'm going to be asking for my iron levels to be checked. I'm starting to think, will the plague of locusts hit me from above or be delivered to my door, you know? This isn't me. I think the ex walking out and abandoning me when I was only just out of the hospital a few days really did a lot of damage. I start seeing a therapist next week, not the first time as I've had historical trauma but feel that was addressed, although it took over 30 years to finally get the night terrors to stop. I just want to heal, get my energies back, and have the strength to build a future up again.

Thank you to everyone for your kindness as always. x