High output and watery output after ileostomy surgery - seeking advice and experiences

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Rlooker10
Nov 07, 2020 7:43 pm

I am four weeks post-surgery for my ileostomy, and I am still having a high output compared to what is considered normal. I'm also still having spells of very watery output. As this is very new to me and wasn't anticipated, it concerns me as I was hoping to return to a normal life after the operation but am currently being hindered by this. I am now on a short-term spell of TPN to keep my nutrients up but would like to know if anyone else has had an experience like this as no matter how much codeine and loperamide I currently take, it just doesn't do enough to get me confident with my new way of life. Any help, advice, or personal experiences that could give me peace of mind would be very much appreciated.

Sorry, I should have stated that they removed a large part of my small bowel (this is my second surgery), and I'm only left with 130cm of small bowel left. However, they have told me that this is enough to hopefully recover and live a healthy life.

Lily17
Nov 07, 2020 8:27 pm

Good afternoon, Rlooker.

I'm over 3 years as an ileostomate. Post-surgery, my surgeon told me it may take a while for the small intestine to get used to its new function of absorbing more water from what I ate and drank, as that had been one of the colon's major purposes. After only a month since your surgery, perhaps your small intestine/body is still adjusting to having to pull more water from what you consume.

That said, there are times I still have very watery output, typically after eating fruits or vegetables with high water content. My surgeon also told me to chew my food to where it was almost paste-like to increase the nutrient absorption and reduce blockages. So, chewing the food well breaks down and releases a lot of moisture from it, and it can go, almost immediately, it seems, into my pouch. I think high fiber intake may also contribute to this. But, I have accepted this as "normal" for me because I haven't been told what is/isn't normal. I just have to go with my own experience.

Are you staying truly hydrated? If most of your fluid intake is going into your bag, you may need to consider how much water your body is not receiving during the course of the day. My trusted surgeon also explained that the reason most ileostomates are rehospitalized is not because of blockages or hernias but kidney failure due to lack of water consumption, absorption. He told me to sip, sip, sip water throughout the day, and that "chugging water" was not a good idea, as that action did not give the stomach and small intestine sufficient time to absorb water before it reached the pouch.

My one exception: Each night, immediately before I climb into bed, I drink a large glass of water. When I'm lying down sleeping, gravity has less effect on the water, allowing my stomach and small intestine to absorb more versus during the day while my body is upright. This helps keep my kidneys healthy and allows my body to process and void toxins.

I hope that others respond to your request, Rlooker - I am curious as to their experiences as well.

Lily17

P.S. - So, what IS high-output for an ileostomate versus "normal"? I've never had that explained to me. Does any of our membership know and care to share?

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HenryM
Nov 07, 2020 8:31 pm

Hang in there, you're experiencing relatively normal post-ostomy surgery output.  It'll take a few more weeks (or so) for your newly redirected plumbing to normalize, which will follow the normalization of your diet.  Keep track of what you're eating for a while, as some things will make you liquidy (milk products) and some will thicken you up (potatoes).  Don't eat any uncooked politicians.

Past Member
Nov 07, 2020 8:57 pm

It's normal for the first few months to have a higher output, but in your case being on TPN for it is unusual, so yours must be a very high output. Have doctors said why yours is so high? Have you had any of your small bowel removed as well?

What foods has your dietician advised you to eat and drink? I'm sure they have already told you not to drink plain water, but just in case they haven't, it will go through you almost as fast as it goes in. So add some orange squash or something else to it, and avoid tea and coffee as well.

Are you taking liquid forms of codeine and loperamide? They work better with high output stomas and take about 30 minutes before you eat. You can take other meds with them to help slow output down too, but that's for the doctor and dietician to advise. Are you having any injections to slow output down? I used to have injections when I had a jejunostomy to slow it down. They did help somewhat. I did dread having the injection every 10 days. I was always violently sick a few hours later from it, but could feel the benefit from it, so I just had to put up with the sickness. It only lasted an hour or so.

w30bob
Nov 07, 2020 9:38 pm

Hi Rlooker,

First thing is, what do you mean by ileostomy? Meaning anything that connects your small bowel to your bag is considered an ileostomy, but how much of your small bowel was removed before they routed what's left to your abdominal wall is what's key. How much of your small bowel was removed during the operation? You don't normally go on TPN post-op unless you were VERY malnourished.....or unless key parts of your small bowel were removed that you need for digestion. If they simply cut your small bowel off at the entrance to your colon, meaning the full small bowel length is intact, you should experience output like you describe for a short time....as folks have said above, and then get pretty close to normal. If any significant portion of your small bowel was removed before you were given your ostomy..........that's a whole different ballgame. So let's start with the question of how much of your small bowel was removed........or how much of it is still intact? Also, is what's left disease-free or are there still affected areas?

Thanks,

Bob

 
Living with Your Ostomy | Hollister
Ritz
Nov 08, 2020 12:58 am

Hey Rlooker..I've had my ileostomy for a year now. I'm owning it as part of the new me. My large intestine and much of my small were removed. I have extremely high fluid output. It never slowed down and mine never will, but I suck it up and am happy to be alive. I take a swig of Imodium if I want to slow it down in order to not stop during a 2-hour ride. We must drink constantly or we will end up in the hospital for low electrolytes...trust me...I do that too often. Just hang in there...it's better than sitting on a toilet all day. Good luck, ritz

w30bob
Nov 08, 2020 2:26 am

Yo Ritz Crackers!

From one "short-gutter" to another............if you're having hydration problems send me a PM.......I've got it figured out.   I'd spell it out here, but I've done so so many times now I'm sure the others will think I'm a broken record.   I can get you straight..........just shout.    

PS.....I'm hoping Rlooker isn't one of us......there's too many of us already......so hopefully it's just the normal bowel reaction to ileostomy surgery.

Past Member
Nov 08, 2020 5:24 am

Advice I could give you is to learn your digestion process inside and out, what causes what and does what at what times and how long, etc. Takes time.

In the beginning I also experienced what seemed at the time extreme amounts of liquid. Looking back after a few years, the issues I had were due to my complete lack of understanding how food was being processed and also I was sticking to my normal diet which was just not going to work the same with a stoma. Takes time to learn this so no need to panic.

Now, while you learn I highly recommend you find the right appliance. I encourage you to look into the Hollister high-output appliance. It is great I think for newbies because there is no way you can leak with this bag; it is probably the easiest and most convenient to clean and it is also easy to hide. They also have rings to make the wafer last longer.

You are your colon now, knowing your digestion and finding the right appliance--make sure to visit the stoma nurses at your local hospital, they are amazing--is key to being able to have a satisfying active life and also is key for intimacy. Knowledge will give you confidence, having the right appliance and learning what the colon does that you now must do like checking vitamin levels and minerals, etc. will help.

Best luck on your journey, you can have a full life and find peace and happiness with the right knowledge and attitude, this place is amazing for information, best wishes.

Rlooker10
Nov 08, 2020 8:34 am

I should have stated that I have only 130cm of small bowel left now. This is my second surgery (the first was a resection) and I still have a section of diseased bowel. They left some in to give me the best chance of recovery to live a healthy life.

w30bob
Nov 08, 2020 5:12 pm

Hi Rlooker10,

Hmmmm... well... that explains your dilemma. Welcome to the Short-Gut Club. It pains me to say that, as I wouldn't wish this on anyone. Well... I can think of maybe one or two... but let's not go there. I'm guessing the ramifications of having only a small part of your original small bowel left weren't fully explained to you. For those who don't know... the small bowel is approximately 22 feet (7 meters) long. Rlooker's 130 cm equates to a little over 4 feet, or about 20% left. I've got 140 cm left and I remember my surgeon coming to see me post-op and telling me I'd be just fine with that. I'd like to run into him in a dark alley some night. But it IS pretty amazing that we can survive with 80% of something as important as our bowels missing! I guess the rest of you folks are all carrying around that extra weight for nothing! Ok... let's get back to you. If what you're about to read is new to you... you need to find the best Docs for your condition, which won't be as easy as it sounds. Due to the relative rarity of what we have you'll find there are very few Gastros who even have a clue about what it's all about. That's because until recently most with our condition didn't survive for very long, and in terms of numbers we're still rather few... so we're sort of the new guys on the block in terms of medical conditions worth treating. So when interviewing Docs tread carefully... especially with Gastros. I'm a big fan of teaching universities for getting the latest and greatest treatments... but that is very dependent on location. You might have to travel a bit to actually see a good Doc in person, but with the video conference appointments going mainstream that works in your favor. I have also found that those with the most knowledge of Short Gut Syndrome worked in the bowel transplant groups, not Gastroenterology. But only the largest universities and hospitals attract those folks, so that's another reason for seeking them out. The reason the transplant folks know the most about short-gut is because patients with short-gut often are put on TPN, and TPN destroys your liver. So many end up needing a liver transplant as well as a bowel transplant at the same time... and I'll elaborate on the TPN thing in just a second. So find good Docs to help you out now, don't wait until things get worse. The good news is the transplant folks really do keep up-to-speed on advances in short-gut because the majority of short gut patients are infants, and for a variety of reasons folks seem to work just a bit harder to help infants survive than older folks... so when advances do emerge that help with our condition they're implemented quickly and clinical trials are expedited in Transplant. Gotta love them babies!!

Ok, so you're up a creek without a paddle just like the rest of us. Here's where you need to focus:

First... get your active disease under control. No shit... you can't afford to lose any more bowel, and you need everything you've got left to be in working order! Don't settle for the status quo in terms of treatment if you're still doing the same thing that got you to this point. You NEED to get it under control ASAP.

Second... you need to get as smart as you can on your condition. You are your only advocate on your behalf. Don't expect or trust anyone else to be in charge of your care. If you weren't handed a copy of Carol Rees Parish's book when you left the hospital you need to get it. It's entitled "A Patient's Guide to Managing Short Bowel Syndrome" and they'll send you a free copy when you sign up (it's also free) over at https://www.shortbowelsyndrome.com/sign-up. It's considered "The Bible" for us empty chesters and there aren't many other books on the subject. When you read it if you have any questions I can get you straight.
Third... TPN. If they told you you're only on it for a short time to provide some added nutrients... I don't want to ruin a perfectly good Sunday... but that's probably a bit optimistic. 130 cm of small bowel, with some of it with active disease, would probably work for someone who weighs 100 lbs... but I'm assuming you weigh a bit more than that? I wouldn't be surprised if you're going to be on it for a bit longer. Many short gutters are on it permanently, which really sucks. But it's the recent advancements in TPN that have allowed us short-gutters to survive for more than a few years. Thank the liver transplant folks for that. But TPN isn't a cure-all and many still don't survive being on TPN for long periods. The TPN slowly clogs up your liver (which acts as a filter)... which then fails and you go bye-bye. So keep a watchful eye on your liver function test results (ALT, AST, Alk Phosphate, Bilirubin) and get tested often (like once a month minimum). Plot out your results to see trends. You'll notice all will elevate the longer you stay on TPN, but they can adjust your TPN formula a bit to help slow that down... and then hopefully you'll get off it. Yeah, they'll tell you there are folks that have been on TPN for 20, 30 or more years... but they can count those folks on one hand. Seriously, keep an eye on this stuff and make sure your Doc and your infusion company are talking... a lot. Your infusion company should also set up a plan for how you will be weaning off TPN... or at least try... and have you in contact with a Dietician from their company who'll be checking micro and macro nutrient levels pretty often. NOT a Nutritionist... a Dietician. Big difference between the two. The idea is to let the TPN keep you alive as what's left of your bowel adapts to try to absorb different things that were previously absorbed by the parts that were removed. The good news here (yeah, there actually IS some good news!) is that your bowel is incredibly good at adapting!! They'll tell you it will fully adapt in 3 years and from that point on it's as good as it will get... but that's pure bullshit. My bowels have adapted more in the last two years than they did in the first 3 years... so don't give up hope. You'll also be receiving hydration through your PICC line, but it's really a separate thing from TPN... although it's all lumped together when it's discussed. There's a good chance you'll get off TPN if you can keep your active disease under control, but you may have to still be hydrated for some time via your IV. I think I stayed on hydration for a couple months after I weaned off TPN, but was told many simply get a port installed instead of the PICC line and require IV hydration forever. That doesn't sound great, but is really the lesser of two evils and pretty easily managed.

Fourth... hydration. Yeah, again. You're complaining of high output... that's something you'll need to get used to. You'll never have your old bathroom habits back, except you'll use a lot less toilet paper! When I came home from the hospital after getting short-gutted I could eat something like a sandwich and have it coming out into my bag before I took my last bite. Liquids took literally seconds to go from my mouth to my bag, which was very depressing. But that improves with time. What doesn't improve with time is that trying to hydrate by drinking more water (or any hypotonic fluid), as that just makes your hydration worse... and you never get fully hydrated. And hypertonic fluids are even worse and really accelerate your dehydration, because they actively pull water OUT of your bowels, so avoid all sugary drinks immediately. When you read Carol's book it explains all this in detail. But hydration can end up being the toughest nut to crack... and it's a very frustrating thing to deal with when you have that ravenous thirst all the time driving you nuts. But as your bowel adapts so does how you deal with hydration. It'll never be normal, where you can just chug a bottle of ice water or such, but it's manageable over time. And that crazy thirst will subside.

Ok... I could go on really ruining your day, but I think I've bummed you out enough. Get Carol's book! Once you've gone through it I and others on here can help you more. Spoiler alert... it can be a bit of a tough read, so don't fret the excruciating details the first time through, just focus on the big messages. And don't despair... Carol doesn't suffer from short gut... and that's evident in how she writes about it. She trivializes some things that, if she had the problem, she really wouldn't (like thirst!). But we'll get you through all that. It's the basic info she's providing that's key.

Oh... those motility meds... Loperamide is pretty harmless, but doesn't really help. None of the motility drugs really have been much help for me. They certainly slow down motility, but motility isn't the real problem... length is the problem. I think of it as a velvet-lined garden hose. If you dump a quart of water into a 22-foot long velvet-lined garden hose it'll take some time before any water comes out the other end. But dump the same quart of water into a 4-foot velvet-lined hose and it'll come out the other end in short order. And neither hose has any motility (i.e., peristalsis) going on... so motility meds are of limited value. Stay away from the Diphen-Atropine if you can... it's not your friend.

Later,

Bob

w30bob
Nov 11, 2020 3:27 pm

Hey!! Now who stuck that SBS ad in my post? Well, whoever.........GREAT TIMING!! Big Brother is watching! (wink wink)

Thanks, whoever you are!

Regards,

Bob

Past Member
Dec 13, 2020 3:46 am

Hey w30bob

I've had my ileostomy for 3 years now and I have high liquid output and get dehydrated too often.
I would like to know your solution to staying hydrated. I am constantly drinking water and adding electrolytes but I still get dehydrated. Any advice you can offer will be appreciated.

Thanks

JudiA
Dec 20, 2020 2:02 pm

Oh hi - nice to see another Arizona person here.

Hi, nice to see another Arizona mate here.   Been an ilio since '89.   Failed J pouch and a loss of infarcted bowel, so yes, a short gut. I am in Prescott, where are you? Low residue diet is pretty boring and makes it hard to ever feel satisfied, as in hungry every 3 - 4 hours and not losing the weight I need to. Since this virus, I have gained 10 pounds I worked so hard to lose. !!!

So chew chew chew and sip sip sip - but I am alive!

Ritz
Dec 20, 2020 4:18 pm

Hi Judi... I live in Chandler, but I go to Prescott often. My daughter lives up there! I typically never get hungry, I know I have to stop and eat when I get lightheaded. Luckily, I didn't gain over Covid, but put back all I'd lost after my surgery. I'm content, just needing to firm up my wiggles and jiggles! I'm glad to be alive and be able to leave my bathroom as I felt I was living in it before! I haven't seen many from Arizona on here. Do you like to hike and roam about? Perhaps we could do that someday 

Rperkins
Aug 15, 2023 4:05 am
Reply to w30bob

My husband is about 11 weeks into his new journey with a high output ileostomy, and he dehydrates a lot. His magnesium, salt, and potassium levels are really screwed up, even though he drinks a good amount of fluids. He is currently in the hospital now, and they are trying him on some new medication (injection). Can you give some advice? He has been battling multiple myeloma cancer as well, which is in remission so far, but he is also in a wheelchair due to the cancer that is in remission. Thanks for any advice you can give.