Unpredictable Stoma Output 9 Months Post-Colostomy

Was wondering if anyone has erratic stoma output 9 months after colostomy surgery? I was having fairly predictable stoma output, about 3 times in a 24-hour period. In the last few weeks, my BM pattern has become very erratic. I will have a lot of output one day and then not have any for 2-3 days. The days I don't have output, I feel miserable with bloating, trapped gas, burning pain in my belly, and heartburn. I have to take increased doses of Miralax and Milk of Magnesia to have output again. The laxatives are very harsh on my stomach. Two GI's I am seeing have no clue as to why this is happening with me. Any insights you can share would be appreciated.

Hi Mark,

The obvious question is... Is your diet changing or are you getting good and bad days while eating the same thing each day? Where are your Gastro's located... Hopkins, Washington Hospital Center or Georgetown? Or are they local?

;O)

That's usually how my output is... a little here, a little there, and then a lot at once. After that, I won't have much for a day or two. The difference for me is I don't have the pain and other symptoms you mentioned. Sometimes I'll get a little stomach pain right before I have a lot of output but that just seems like everything starts flowing. The pain is gone when the output is done. I'm sure it's all diet/fluid related but I really don't pay attention to any of that. I was told I need to drink more water, so I had to come up with something that motivates me to drink more cause I really don't care for plain water that much. Works good so far. Good luck figuring it out but mine is about the same as yours.

Hi Bob. Good questions. I should have mentioned that in my post.

I had the colostomy because of inability to pass stool due to pelvic floor dysynergia. The hope was that it would be reversed after I go through intensive pelvic floor therapy with biofeedback and get my muscles to behave properly. Haven't made any progress with that.

I eat the same regimented, carefully balanced, easy-to-digest diet every day. That's what is baffling my GIs and even my registered dietitian. My GIs are at Hopkins and Penn. Do you know any GIs at Georgetown or GW that I should see?

Hi Alex. Thanks for sharing. I think I could handle my situation better if I didn't have the other symptoms. But, it is what it is. I'm thinking this may be a flare-up of dormant SIBO that I have. I was tested for H. pylori 3 different ways and all were negative. Never been tested for SIBO. It could also be IBS, severe acid reflux, or even bile issues. I'm trying to get my GI's to order the tests for me.

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

Good luck.

Have you tried Lamodil?

Hi Mark,

Well... it sounds like you're doing the right things... the way you eat helps eliminate a lot of things, which should make finding the problem much easier... but you know how it goes with bowel issues. As for good GI's... I'm coming up short myself. At Hopkins, I was seeing Bayless, their "Father of IBD," but haven't seen him in years. He focuses mostly on research now and is really getting up there in age. I had my ostomy surgery done at Washington Hospital Center back in 2014, primarily because of the surgeon I wanted, but wasn't impressed with their Gastro folks. That was a while ago, so I can't comment on whether it's gotten better or not, but haven't heard anything through the grapevine to make me think it has. So I've mostly been using Georgetown, but the Gastro I found the best up there had to recently move to PA due to family issues... and I'm not finding the rest of the G-town lineup all that great. I ended up seeing a really good Gastro in G-town's Transplant group. Turns out they deal with short-gutters more than their regular Gastro department, as many end up getting transplants. Unless you're short-gutted, I'm pretty sure they'd refer you to the hospital's regular Gastro folks... so no help there.

Seems most of the most experienced Gastros I knew around here bugged out when Obamacare rolled out, and then COVID seemed to convince the rest it was time to hang up the stethoscope. If you find anyone good, please let me know and I'll do the same.

In regards to your problem, the thing that jumps out at me is the heartburn. That's not typically associated with a blockage of any type, and tends to point to a digestive issue. Belly pain is hard to localize, but combined with the heartburn would suggest a digestive issue and not a bowel one. I'd suspect your GI doc would want to do an upper Endo to see what's going on in your stomach and beginning of your small bowel. I assume your liver numbers and other bloodwork are coming back normal, right?

Regards,

;O)

Have your GI doctors done a CAT scan? Unless you've changed your diet drastically, you might have a kink or something blocking it. I've had an ileostomy since 2008. I have had a few blockages when I ate too much of something or something that wouldn't pass easily, but I can count on one hand in 15 years that has happened. It helped me to lie in a deep tub with very warm water for a few hours to help things pass when that happened (I'll never eat cauliflower again!)

Is there anyone here who went from colostomy to ileo, with rectum removed, and mesh put in?

What are your blockage symptoms?

Also, is there anyone here with bowel fistulas?

I'm in Pa. No really good specialists remotely near here.

My insides burn and pain all the time. On March 10, I had an MRI Enterography, which supposedly showed no blockages, no inflammation. Only a small perirectal fluid collection.

What is the normal amount of emptying, and consistency for ileo?

The surgeon was horrid.

But he died in September.

I feel so alone.