Severe Lower Abdominal Pain Post-Ileostomy Surgery

Hey everyone.

I had my ileostomy surgery 3 weeks ago and things have been great so far in comparison to what I was dealing with before the surgery. I seem to be doing alright with food, water absorption, energy levels are good, etc.

There is one thing though. Since the surgery, I've had 3 moments where I suffered from pretty severe pain inside my lower abdomen. It feels like someone is squeezing my bladder and even the smallest sensation to pee becomes pretty painful/feeling of pressure. If I do get a full bladder while in this state, it hurts to walk and peeing is pretty painful. (The pressure releasing, not actually peeing)

The first 2 times this happened were pretty mild, but yesterday I got hit hard. I was in so much pain. It wasn't a blockage because the pain was constant and my output was normal (thick output). I did notice this time that I had a lot of gas coming out of my stoma and each time gas came out I felt slightly better. Maybe I had severe gas buildup? I did eat ice cream the day before.... If this is the case, is that normal? To have gas build up so much it hurts? Is this just part of recovery? I never had issues with gas before the surgery. And even if this is the case, am I supposed to feel like my bladder is being strangled? Lol

Oh.. and what was different about this pain I experienced yesterday, is that it also came with pretty bad chills, headache, loss in energy/appetite.

The odd thing is that I feel 100% fine now...

Has anyone experienced anything similar to this while healing??? I saw my surgeon last week and all he did was take a urine sample to see if I had a bladder infection.

On a side note... Can I take Tylenol? I have some white pills with no coding on them. Should be fine?

Thanks for your help

I wouldn't take the pills unless you know what they are. Tylenol is fine. Gas buildup can be painful until it comes out, just like a food blockage.

My anatomy is a bit different... but did you have a catheter while in the hospital? Do you feel like your bladder is fully emptying?

I went through horrible pain for about a week and it was the muscles under where my stoma was. I thought it was a blockage and spent about a week with a heating pad. My surgeon upped Gabapentin (Cleveland Clinic really likes to use this vs opioids) but I was doing things like leaning to get stuff out of the dishwasher, laundry and I was told to stop and rest more. The first few weeks after recovery kinda blend together in my brain, the first couple weeks while I was on the heavy-duty pain meds I don't remember much. Did your pills not come in a marked prescription bottle? Heating pad and tens unit were my best friends for a while in place of pain meds.

It's just so strange. I stick to the diet recommended by my surgeon. I find it odd that everything is awesome every day and once in a while I get hit hard with this crazy pain/discomfort for no reason that I can identify.

Hoping things get better as I recover.

I had a catheter for like 5 days in the hospital. Didn't seem to have any issues after it came out. I was peeing normal right away. My bladder never feels full unless it is. The pain/pressure seems to be coming from somewhere outside my bladder but close to it. My incision is right above my bladder so I figured maybe it was the internal stitches causing the pain or something. Not sure.

I'm also not on any medication. I was given a prescription for strong pain meds but refused to take them. I was curious about Tylenol for headaches.

Are the headaches new?

Do you only have one incision? How does it look?

With an ileostomy, I know any extended-release meds can be iffy... I remember I had to buy the name brand Tylenol to get it in regular/not extended release. But another med I've taken for a couple of years is extended release because it's the only form it comes in, and I always did ok with that. The extended-release potassium came out whole in my bag.
A lot in the beginning is experimenting. I'm serious about the heating pad though, if it's muscle/healing/gas pain it will help.

Headaches are new but it only happened once. Thinking maybe I had mild dehydration or something?

My surgery was laparoscopic. I have 5 tiny incisions and a large one below my belly button. Seems fine. It's a bit tender but I assume that's expected while healing.

I just bought a heating pad.

I hope the heating pad helps!

I get really bad headaches/dizziness when I'm dehydrated. Did your provider mention any specific hydration drinks/electrolyte supplements or do you have something you like already?

Hi Danno, as I was reading your post, I thought, it sounds like gas. I sometimes get very painful gas, and have come to recognize it. I eat a lot of gas-producing foods, which I refuse to give up, so that is the price I pay! I never had a problem with gas prior to my ileostomy either, and my theory is that when you have your large bowel intact, there is a lot of room for that gas to expand and slowly exit. With only your small bowel, the space the gas occupies is much less, so it's bound to have consequences. Mine always does make its way out, but yes, it can be painful. If it's really bad, I will lie down and apply gentle pressure around my stoma, and that sometimes helps it to escape. The headache does sound like it could be related to dehydration.

Terry

Thanks for the reply. Seems like that could be the problem then. Too much gas. I'm still a bit confused about the pain/pressure I experience in my bladder as a result. I'm thinking maybe my incision is healing or everything inside is touching when I get too full/have gas? Pretty confused about it.

Yeah, they mentioned some drinks I should keep around the house just in case. I didn't think much of it until now. But I think I would rather be prepared.

I really struggled with dehydration to the point where waking myself to drink plain water throughout the night was pointless because I needed more than plain water but can't stand sweet drinks. I was surviving on Gatorade-like drinks for the months leading up to goodbye colon day. I use Buoy drops in my drinks because I can put it in anything and it shouldn't affect the flavor. The problem is I mainly drink 3 things and 2 have zero sweetening whatsoever so in those I can mask the Buoy flavor with lemons and/or salt. But in everything else I've tried including cocktails, the drops aren't noticeable. They also have a medical discount program. I don't get anything for sharing about them.

There are so many reasons that could be possible having had the surgery so short a time ago. I had lower abdomen infections in my lower left abdomen for years which eventually became serious infections and later led to the Ileostomy surgery. I was taking Cipro all the time before the surgery. You are not supposed to grow bacteria there at all, and the doctor was dumbfounded about this, also the tests would not show an infection but only Cipro would fix it which is an antibiotic. So, the doctor argued with me for years, trying to convince him it was an infection, refused to believe it. That was until I ended seriously ill at the hospital, almost died of complications, only then he gave me the antibiotics and later apologized. This stopped for the most part after the surgery but it can flare up at times, even though it's been years now, pretty symptom free now for the most part which is great. My highly regarded doctor to today can't explain it but gives me an antibiotic if it ever happens which is super rare now after the surgery. To today a mystery to science. This experience led me to not trust doctors, they don't know everything and try to make up explanations when they are at a loss as this was the case with this for years. Best luck to you.

Hi Danno,

You didn't mention what your previous condition was that resulted in your ileostomy, so the pain could be a lot of things. But at 3 weeks out a simple blood count would rule out any infections, so your doc should have you get labs done. Dehydration shouldn't cause the pain you describe, but should still be monitored because it's important. Measure how much you pee in a 24-hour period and note the color of your urine. You should be peeing about 1 to 1.5 liters in 24 hours. Less is bad, more is good. And your urine should be clear to a very light pale yellow. Darker is bad. Many don't really know how good their hydration is and just assume there's no issue until things get bad. But ostomates can't wait that long because permanent damage to the kidneys can result. So check it every now and then to be sure.

If you have chills or suspect a fever again..........take your temperature. And take it a few times during the day when you feel fine to establish a baseline. The chills, headache, loss in energy/appetite are signs of infection, but the blood count will confirm that if that's the case. Laparoscopic surgery is great for the patient, as the incision is almost non-existent, but the docs really have to know what they're doing, as they can't see the big picture as they're cutting, removing and sewing stuff. It's very easy (and common) to cut something they're not supposed to, which can create quite a mess in your abdominal cavity. The bloodwork will point to any such issues.

Hope you feel better dude, but if not.......get those labs done. They can draw blood and have the results in about 30 minutes at most hospitals or labs. Don't let this drag on if the symptoms continue..........you know why.

;O)

Bob

Hi Danno, at three weeks out, you really are probably just having pain from internal healing. Patience my friend!

Terry

Wow, that's intense. This kinda sounds like my ulcerative colitis journey. It took me like 4 years to finally get proper care from the healthcare system, and even then, it took another 3 years to test medications that just led to surgery anyways. Lol.

I'm hoping it's just a recovery issue of some sort. I have an appointment with my surgeon this week to discuss further. It's happened 3 times since my surgery 3 weeks ago, so I'm a bit concerned.

I hope so. I just found it strange that it's only happened on 3 occasions with the intensity increasing each time. Then the next day I feel 100% back to normal. So strange.

Hey! I had ulcerative colitis and the disease has been removed. I've been told that I don't have to worry about anything, that I'm cured now.

I drink a lot of water and my pee has been clear since I left the hospital. Prior to my surgery, I was very athletic and always drank about 4L a day, so that is no problem. Everything seems fine, which is why I was puzzled when my symptoms (besides the pain) were similar to dehydration.

The pain, on the other hand, is not consistent. It's happened 3 times since my surgery and was more intense each time. I usually start to feel the pain suddenly closer to the evening time, and it's so intense I curl up in a ball and lay in bed wanting to die. Then by the time I wake up in the morning, it's like it never happened.

The stomach pain is painful but I can get through it. It's the pressure that feels like my bladder is being squeezed when I have a full bladder that really hurts. I force myself to keep drinking water even though I know it will hurt when I have to pee again. So I don't know. 3 times seems like it's becoming a thing. Maybe it's just gas?? Who knows.

Hi Danno. Tylenol is okay to take, just make sure it's not the 8-hour kind. I like the rapid release ones because I don't have any issues with them coming out in my bag partially undigested. If you're only 3 weeks out from surgery, it could have just been gas pain. If it happens again, I'd call the surgeon's office and let them know.

Hi Danno,

I gotcha. You either had a proctocolectomy that resulted in an ileostomy or a total colectomy that resulted in the same. If you had the former, you have a better chance of being "cured" than if you had the latter, but I hear ya. Technically, UC is a milder version of Crohn's, and only affects the colon, but they're really both the same monster, so to speak. Since they don't know what causes either, they can't say for sure you're cured. Hopefully, they didn't remove your ileocecal valve, but you should find out for sure. It should be in your surgical report, and if not, I'd ask the surgeon before he forgets. But for now, let's just assume you're cured of UC.

The pain you describe sounds like an obstruction. When you wake up... what's in your bag... stool or gas? Either needs to exit, and it can only go one place... so what do you find when you wake up? Even if it is just gas, it shouldn't be causing that kind of pain. I mean, if gas can't make it through your bowels... what chance does solid food have? I used to try to sleep off obstructions too, but you have to be careful. If you obstruct too long, you run the risk of perforating your bowel, which will cause sepsis and you'll die. But at least you'll be asleep though. O)

The other thing is that when the body experiences more pain than it can deal with... it shuts you down. You pass out. That doesn't alleviate the problem or stop your intestines from rupturing, just stops the pain signals from blowing up your brain. So bottom line is you're playing with fire. If it were me, I'd get a CT or MR-E and find out what's going on, especially if it's getting worse. At the very least, set up a tele-visit with your Gastro and see what he/she says. Keep them in the loop.

Yeah, I remember the 'curling up in a ball' and hoping to die nights. The scary thing was not knowing how long it would last and if I'd see tomorrow. Seconds seemed like hours... just not a fun time, as a lot of folks on here can attest to. I was young and stubborn, and rarely took advice, so I suffered through it each time like you're doing. If you're smarter than I was... and take advice... mine would be get it checked out now... before you get the cool helicopter ride to the big hospital. It's a great wild ride, but since you'll be curled up in a ball and screaming your head off... you really won't appreciate it. Or the bill that comes with it. Be smarter than me. Please.

;O)