Bladder Issues After Colostomy/Ileostomy Surgery - Seeking Advice

I had an emergency transverse colostomy in May 2021, but it kept prolapsing until at midnight at the end of that November, it totally prolapsed and my intestine fell out, dragging part of my bowel with it. A friend drove me to the hospital with me cradling my intestines on my lap. I have photos, but they are very graphic and probably not permitted here. Of course, these things always happen in the middle of the night or at the weekend, and that was no different. To cut a long story short, I was admitted but my surgeon was away until 3 days later when he revised my colostomy to an ileostomy. Apart from early problems with constant leaks, finding the right pouch and an excellent stoma nurse made Bertha manageable [Bertha is my stoma's name, not mine]. My surgeon told me he had made the end of my large intestine into a J shape - he did not say J-Pouch. I often get the urge to poop out my butt, and it feels like it is 'crowning' [sorry, I don't know how else to describe it] but nothing comes out - ever, no matter how hard I try. And then it seems to disappear again. Could this be a phantom sensation or if not, is it normal that if there is mucus there, it just slinks back again?

My main question I have is whether any other ostomates have had bladder problems since their surgery. I never had a problem before mine, but now I need to urinate every two hours at night, it's like clockwork, not piddly small amounts either. I just about break my neck getting to the bathroom in time. During the day, it's a lot more frequent, but then obviously I drink more fluids than I do late in the early evening or at night. There was no change in frequency or amounts when I didn't drink anything after late afternoon, just an extremely parched mouth, so I abandoned that plan. My understanding was that I'd wee less with an ileostomy, as I'd lose a lot of fluid with my output but so far, I don't have a problem with my output being overly liquid, although it is less thick with my ileostomy than it was with my colostomy, depending on what I eat of course.

I'd be grateful for your replies. Thank you in advance.

Hi Bertha's human, I can empathize with your prolapsing bowel, although mine wasn't as bad as yours. I was on an isolated island by myself, had to be transported by water ambulance to the nearest hospital with about six to seven inches of bowel outside my body, filling my pouch essentially. My output stopped completely and I was in a lot of pain. Your experience sounds pretty horrific.

Feeling like you have to have a bowel movement is pretty normal. Happens to me once in a while and I'll get a little mucus when I bear down, or even when I pee. I have always had really frequent urination, and every two or three hours is normal for me during the night. If this is a change for you, maybe ask your doctor. As for peeing less with an ileostomy, you should be making up for any loss of fluids in your output by drinking lots of water and other fluids throughout the day. Your body will not absorb water the same as it did pre-ileostomy, and you need to supplement this or it can lead to all kinds of problems including kidney disease. Your colon is the organ that absorbs most of the water your body needs, so when you lose your colon, you need to compensate.

Terry

I've also had an increased need to pee since I got Stomie. You might consider talking to a pelvic floor physiotherapist after speaking to the surgeon. That sounds like a lot of trauma to your abdomen which can also have impacts on the pelvic floor. That can affect how you urinate.

Good luck!

I sure as hell hope I don't have a prolapse like Bertha or delgrl525. My stoma sticks out 1 and a half inches. And when it swells, it gets huge. Freaks me out. Then it will shrink down for a while. Did doctors explain why your stomas pushed out like that?

Have your kidneys been checked? A simple blood test can find out if there is a problem with them. Also get your glucose level checked.

Good luck.

Thanks for your reply delgrl525. My trip to the hospital at midnight was bad enough, but I'd have hated to have been in your situation. I can laugh about this now, but 2 hours later when the ER finally had a bed for me, one of the nurses threw back the blanket covering me, took one look at the alien monster hanging out of my abdomen that I'd attempted to cover with my pouch, scurried off in shock saying "Oh my God! I can't deal with that!" Thankfully, another very capable nurse stepped up and took charge.

It's reassuring to learn that the sensation of wanting to pass a stool is normal, as well as hearing that I'm not alone in having to pee so frequently. I was in and out of the hospital for almost two years requiring 7 lots of surgery that twice included a stent from my kidney to my ureter because the mass in my abdomen had blocked off my right kidney and it was swollen [my stoma is on the right]. I sometimes wonder if it could be that when my intestines were pulled [and fell] out, pushed back in, rearranged etc, they didn't go back in place as nature intended and now cause pressure on my bladder. The good thing is that my subconscious wakes me when nature calls during the night. My urologist is not a great talker and when I later went to have the stent/s removed, I mentioned to him that I now urinate an awful lot, and all he said was "That's good," and walked off. So much for that. 😄

Words of Encouragement from Ostomy Advocates I Hollister

Hi Beachboy. If your stoma changes size dramatically, I'd see your gastric surgeon or stoma nurse about it. What I did learn was that sprinkling caster sugar on your stoma can help shrink it, but in my case it didn't really help. Nor did using an ice pack on it. Two days before mine totally prolapsed, my gastric surgeon had manually manipulated it back inside, not a pleasant experience, but that too was not successful. My ileostomy is far easier and neater than my colostomy was, but my circumstances were somewhat complex.

My gastric surgeon, like my urologist, is not a great talker and he never explained why my stoma prolapsed as it did. My own research indicates the following possible causes "Increased abdominal pressure due to tumour, pregnancy, coughing and sneezing. Excessive exertion eg heavy lifting." Of those possible causes, I'd guess tumour would apply in my case. Somewhere along the line, during one of my early admissions to hospital, I was diagnosed with malignant ovarian neoplasm that scans showed had totally invaded my abdomen. I saw the scans for myself, and named the neoplasm Flubber.

Being diagnosed with cancer actually saved my life as my oncologist never gave up trying to get me well again. My situation, he told me, was "unique" in that they couldn't get to the neoplasm to obtain tissue as it enveloped vital organs and it was too risky. The interventionist radiologist tried going in with a needle between my vertebrae but he abandoned it as it was too risky. So without being able to collect enough material to do a full histology of what type of cancer it was, they weren't able to treat it. At that stage, for more than a year, I'd been left with a small leaking abdominal fistula that was left open to drain. This was from my first surgery when the REAL cause of my problems, a massive abdominal abscess burst, leaving me with a wound that measured 10 cm deep, 5 cm wide and 9 cm long. And yes, I have photos of that too.

Fast forward to many months later. In my fourth week in the oncology ward, as the nurses washed me, a solid jet of beige coloured fluid shot straight up out of the fistula, about 20 cm in the air, and it made the sound of a running tap. Four nurses scrambled to mop it up, they used two bags x 30 bed protectors in the process. You can imagine the pressure it was under to have gushed forth like that. The very next day, I began to feel better. I was able to eat again.

I never did find out from pathology or my oncologist the composition of what it was exactly that shot out of my abdomen, but it was the neoplasm. Nine months later, blood tests and scans showed I do not have cancer. From being given a prognosis of only two months to live to being declared cancer free, is nothing short of a miracle.

So in my case, I believe it was the tumour that caused my stoma to prolapse. It may also be the cause of my bladder issue. I'm due to have blood tests in a month's time and my kidney function will be checked, along with other things.

Good luck.

Thank you for your reply. It's somehow comforting to learn I'm not alone in my constant need to urinate. My pelvic floor muscles were in pretty good shape before my surgery, and I do still practice my exercises. I did indeed have an incredible amount of abdominal trauma that I detailed in my reply to Beachboy. In total, I had a massive abdominal wall abscess, invasive malignant neoplasm, blocked kidney [twice], diverticulitis of the sigmoid colon and bowel obstruction, DVT in groin, transverse colostomy, prolapsed colostomy, revision to ileostomy, C-Diff, and hospital-acquired pneumonia, to name but a few that I survived. I've come to love Bertha, my stoma, and needing to pee often seems a small price to pay. I am one very lucky lady and ever so grateful to still be here! 😊

I have a tumor in the same place except it's my left kidney. The stent was too uncomfortable for me when it came to urination so I removed it pretty quickly. I know my kidney is going to die eventually but I'm okay with that. As my urologist said, "One kidney is a necessity, two is a luxury"! He said I probably won't even have to have it removed.

I'm somewhat speechless, Bertha. You have really suffered.

Thanks for sharing your story.

Live long and prosper.

You are a warrior.

Bertha, you are a warrior. Please continue to keep us updated.

Live long and prosper. The world is lucky to have you.

Thank you so much. I've had friends tell me that I am so brave - I tell them I'm simply too stubborn to throw in the towel without a fight! It helps that I was born blessed with a sense of humor and untold optimism.

Thank you, Beachboy. I'm a stubborn and very determined old girl, and count myself very, very fortunate - and grateful - to still be here, hopefully for many more years to come. I won't go into details, but I've had many, many challenges during my lifetime. What I went through in the past few years seems like one more test I've needed to pass, and is now thankfully and hopefully but a memory.

He true survivor,

Thanks for your reply. Those stents can hurt pretty bad. The last scan I had in December last year showed a small 'collection' of flubber around my bladder, but my oncologist said it was nothing to worry about, that it would eventually disappear, which I'm sure will be the case.

Here's wishing you everything of the best.

Wow! I couldn't ever imagine having to hold my intestines in my lap. That must have been so traumatic for you, and how did you contain it until you had surgery. I have noticed a lot of pressure when urinating. I had a rectovaginal fistula so I assumed it was a UTI, it's not. I'm wondering what it could be and since I have this colostomy due to radiation damage, could the bladder also be affected.

Wow! I couldn't ever imagine having to hold my intestines in my lap. That must have been so traumatic for you, and how did you contain it until you had surgery. I have noticed a lot of pressure when urinating. I had a rectovaginal fistula so I assumed it was a UTI, it's not. I'm wondering what it could be and since I have this colostomy due to radiation damage, could the bladder also be affected.

Intestines

🤣I've never heard the term flubber! What is that exactly?

Exactly

Sweetie2003,

Last July, I had 46 rounds of radiation therapy for prostate cancer. My radiation oncologist advised me to drink a lot of water before each treatment. The goal was to fill the bladder as much as possible. This was done to provide some protection to the bladder and intestines from radiation damage.

Before each treatment, a CT scan was performed first. If scan results revealed I didn't drink enough water, treatment was postponed and I was given a lot of water to drink. Only when I passed the CT scan, could I proceed to radiation treatment.

The TomoTherapy machine used on me has an extremely accurate aiming system. But still, surrounding tissues receive permanent radiation damage. This damage causes a reduction in tissue blood flow, interfering with healing. As a result, no surgery should be performed on radiation-damaged tissue.

This is why I have a permanent colostomy. 16 years ago, I had three hernias surgically repaired using a mesh-type material. Over the years, the mesh migrated and adhered to my bladder and colon. Last year, the mesh perforated my colon right after the completion of radiation therapy. The mesh nearly punctured my bladder too. Fortunately, I had surgery to remove all the mesh before that happened.

Due to the peripheral radiation damage to my colon, I cannot have my colostomy reversed. The surgeon is willing to give it a try but warned me that a successful reversal was unlikely.

A bit of a long story. But it's important to understand the possible side effects and risks of radiation therapy.

That being said: Tomo radiotherapy treatments successfully eliminated my prostate cancer.