What to Expect After Ileoscopy/Proctolectomy Surgery?

Good afternoon all. First, I'd like to say how much I appreciate this forum that you are all a part of. It's a tough subject to talk about, let alone find others who may be able to help. I'm scheduled for an ileoscopy/proctolectomy in early March. I know it will be life-changing for a 58-year-old set in his ways. However, after 16 years dealing with UC, I think I'm ready to try anything. I've been told it will be about 4 weeks before I can do anything of substance such as long walks, exercise, driving, etc. Looking at some posts, I see that this is probably way off base. A few questions that have been cluttering my mind. When might I expect to be able to shower daily? Dr. says I'll be emptying the bag maybe 4-5 times a day. From what I see, it will be every two hours or so. Is there anything such as a larger bag for nighttime? There doesn't appear to be as so many people suggest getting up a few times during the night. As for diet, etc., I realize that this is an individual thing that will take time to figure out. Any suggestions/hints are greatly appreciated. It's still a while till I join "the club," but one concept that seems consistent is "preparation."

All the best and thanks again!

Hey shark fan. Welcome. Hope you stick around because I think we can help each other. I'm just curious why you are trying this last resort as opposed to new meds that may help you keep your plumbing?? Let's start there for now.

Details will follow. Thanks. Warrior

Hi Shark,

I'm not sure why they call it an "ileoscopy with proctolectomy" because what else would they do with your intestines once they remove your colon and rectum? I would think the only thing they could do would be to stick it through your abdominal wall and give you an ileostomy. Oh well, semantics I guess. 4 weeks is the generic answer anytime your abdomen is cut, but for some it's earlier, some later. I was showering right after I got my staples out, which was 2 weeks post-op. I don't even know if they use staples anymore, but if so, you really want to keep those suckers dry. How often you empty your bag really depends on what you eat (and more importantly drink) and how quickly your bowels adapt to what's missing. Normally they say bowel adaptation is complete in 3 years, but they're full of ostomy output. Your bowel will continue to adapt longer than that. Once you figure out what to eat and when, you'll get the hang of it pretty quickly. The hardest part for me was just looking at my damn stoma. God, that thing was ugly. Still is. As for sleeping... that's a tough one. I do believe they make larger bags specifically for urostomy patients that can hold a lot. Don't know the details and I've never tried one, but hopefully someone on here will chime in and let you know if those work in your situation. If not, you get used to not sleeping, or sleeping in short bursts, as it's way more fun than dealing with a nighttime blowout. Diet is also a tricky one. Depends on what else is wrong with you and your digestive system. Contacting a good IBD Dietician is always worth the cost. You're smart to be looking into all this BEFORE your operation. Obviously, the more you know, the better off you'll be. You might also want to start looking to see if there are any ostomy support groups in your area and get to know your local wound and/or ostomy nurse. And keep asking questions on here, we'll do our best to answer all of them.

Regards,

Bob

Hi Warrior,    

I was on Remicade for 6 years until it stopped working.   Then on to Entyvio which didn't work.   Simponi worked long enough to get me off Prednisone which I had been on for over 5 years.   I was recently on Xeljanz which had no results.   Dr. came in from the last sigmoidoscopy with the words "There's nothing else I can do for you".   It was actually a relief as I was waiting for those words to come for the last few years.   Thanks for the quick response!    

Thanks for the info and support, Bob.    

Sharkfan- When I had my ileo, I wouldn't eat too much at night, but I would set my alarm for 3 am to burp the bag because of the gas. I was able to eat what I wanted. After the surgery, I started feeling more normal after about 3 weeks, but the fatigue hung around for a while. I was able to shower right away. I had staples. Fortunately, I was able to get a reversal.

I was using my phone to reply to you earlier... hate that damn thing but just wanted to try to get some basics... quickly... so it worked... thanks...

Like you and some of us out here, I went through the same course of meds... Remicade didn't last very long... I was about to try Humira after Remicade when insurance and doctor delays cost me a lot of blood... within 6 months of a decently looking colon via scopy, the intestine would not stop bleeding... I tried mega dosing prednisone... orally, anally - the Rowasa things... it was hopeless... and of course too late... ileo was done as an emergency Christmas Eve 2016...

What I don't get is it doesn't sound like you are in a state of emergency... meaning it's gotta come out now! Nope... March you said?? So it's very hard to understand if you're bleeding... if you are not under control some sort... how in the world can you wait until March?? So that's why I didn't think you exhausted all avenues with the meds... 'cause as you know... surgery is always the last option...

This disease like many others, the medicine is worse than the illness... and it is stretched over a lifetime or sometimes a short time... I have had IBD over 35 years... so yes, I went through the ringer knowing the last few years I was gonna need the colon removed... had hoped later than sooner... sooner came overnight.

Now that the decision has been made to have it and the rectum removed, it's probably the safe bet for you... I still have the "stump"... and guess where IBD landed after the colon was removed?? So with good intentions of keeping the anus/rectum, for reconnect, that ship has sailed and has gone down like the Titanic... will require a future proto... so I am half there with the ileo... for over 3 years... just gotta decide when to get my ass kicked off... the stump still bleeds... have you tried Uceris foam?

You joining now and soon having the same surgery, and asking the right questions, is like a godsend to me... so I am gonna be watching you my new friend... and trying to help with at least half of the job you will be experiencing... deal?

Oh... there was another guy like us... here... I typed him and probably scared half the poop out of him already... he's gone silent...

I believe we have a verbal commitment to help our neighbors. This is one way... and it does get the job done if people participate... and stick to it... Appreciate hearing your side of the story. Just why is the doc waiting till March if "there's nothing more he can do?" Warrior

Oh oh... I just signed off to preview your response above when it hit me... you said the doctor is used a sig scope? Did you mean a colonoscopy? 'Cause I sure in hell won't take a sig over a colonoscopy to sell me a proto. Please advise. Thanks.

Tmooore2, there is a post on here from SharkFan about the same thing. You may want to check it out. Good luck

Hello Sharkfan.

It's good to see that a few of your fellow ileostomates are replying to give advice and support. I just wanted to chip in and say that there are plenty of bigger bags on the market for night-time use and if these are not enough, then you could always try an irrigation sleeve which is what I wear overnight as it is be big enough to hold whatever get's ejected into it. 

It is good to see that you are preparing for what 'might' be, because the more of that you do, the easier it seems to be for folks to adjust to the real thing when it comes. 

I hope everything goes well for you and that you let us know the outcomes. 

Best wishes

Bill

Hi, welcome to the club. Mine is almost a year. It took me a long time to adapt. My doctor did a great job, but it's still a lifestyle change and I hate looking at it. But we are all here, so the best of luck to you.

Good morning,

I have had my ileostomy for 11 months. It's all trial and error. I showered in the hospital before I came home. I was making plastic covers and taped around them to keep it dry. I now just shower with no covers, I use a hair dryer to dry it. I empty more than that. I get up through the night to empty my bag. You will be very cautious of what you eat. I still will not eat corn or popcorn. I am scared of a blockage. It is a big adjustment. I still have issues at times.

SharkFan,

Check out the previous post on this subject as it might give you some more advice and answers.

https://www.meetanostomate.org/discussion-forum/viewtopic.php?t=10179

Bain

Warrior, nbsp

I had the colonoscopy about a year ago and found the disease had spread to about 18" with traces even farther. Nbsp; This is when they put me on the Xeljanz. Nbsp; I went from 10 mg a day to 20mg. Nbsp; They then got a warning that this high a dose of Xeljanz can cause blood clots. Nbsp; The sense of urgency just got worse. Nbsp; I was on Cortisone enemas and suppositories. Nbsp; I've used the foam, mesalamine suppositories (just caused more bleeding) and mesalamine tablets. Nbsp; After the recent sig I told the doctor "I can't trust my body anymore". Nbsp; This feeling, and the fact that my colon looked as spotted as a giraffe's neck, she made the surgical referral. Nbsp; I got a call the next morning. Nbsp; I met with the surgeon a few days later. Nbsp; As the rectum and anus are totally involved they must go. Nbsp; I've run out of drugs. Nbsp; I've been blessed that I haven't had the heavy bleeding issues like most. Nbsp; I had the option of surgery on Feb 11 but work and other commitments caused me to choose the March date. Nbsp; Nbsp

I could put up with this a few more years but I'd be just putting off the inevitable. Nbsp; I'm not getting any younger. Nbsp; I cancelled many social engagements (for the first time) this holiday season. Nbsp; Having to get up from the table 3x during dinner out with friends was the last straw. Nbsp; This forum and others I've looked at show that my situation is nothing compared to others. Nbsp; Again, I thank you all for the support and sharing or such personal info. Nbsp

SharkFan

Thanks, you were right.   Good info

SF

Get as many wafers and adjunct supplies as possible and/or as you can afford!! You can get free samples from Hollister, Coloplast, Convatec, Liberator, etc. After your surgery, while still in the hospital, insist on receiving your "welcome kit" from the hospital Ostomy therapist. It costs the hospital nothing, since the above companies supply them for free. You can also buy supplies on eBay, but be sure to check the posted size and expiration dates before purchase. Research your local area for the one or two pharmacies that still carry some Ostomy supplies. Determine whether a local support group exists. If so, ask if they provide sample supplies. You need an arsenal of supplies because, by trial and error, you will need to determine what works for you. Should you use a 1-piece or 2-piece appliance? What brand is best, brand H, C, or V? Do you need flat or convex flanges? Do you need to use powder, skin protectant, Eakin seal, or paste? Will you need adhesive remover to aid in the removal of the old appliance? You will deal with the curvature of your skin, the stoma size, the muscle and fat under your stoma, leaks, skin irritation, etc. Be sure to have at least 2 months of supplies on hand. You will encounter problems with your insurance coverage and slow delivery of supplies. I'll PM you in case you want me to send you some samples.

Petey,

Thanks for the advice. I've been checking Amazon and now am getting pop-up ads for supplies. A lot to look into.

I've sent you a PM. Don't buy anything yet. I'll send you a bunch of samples. Do call the 4 companies I mentioned. Don't be shy and ask for all you can get.

I could not have said this any better. Well done. Just perfect.  

Immediately,  you will know the size of your stoma and order the correct appliance wafers.  They will measure you and give that diameter from the hospital.  Everything you order will depend on your size.

Also re: clothing?  The stoma is right on the belt line, so you gotta wear a low rider type of pants, or something a bit higher. (I think our friend Bob wears skirts and not because he's Scottish. Nope. But he's from Maryland. So who knows...)

 It sucks trying to use a belt, so suspenders I hear are making a comeback. Ha ha. As if..

 If you are a size large dress shirt,  likely will need extra large to kinda hide the bulge.  Same with pants if you're gonna try to just cover it. There are also protectors that cover the stoma which you might. Then wraps. Or belts to hold and secure the bag.  There are vertical and horizontal types.  

Since you have some time before surgery, I would suggest getting a faux pas system on you now.  If you saw some YouTube videos, you will know where to place it. Then deal with the system now. So you get the idea what it's gonna be like.  

And always in your first year plan on leaks as you get used to using systems.  I will never forget after being sent home my first week waking up to a mound of poop on my stomach as I woke up from sleeping on my back.  Disgusting. But manageable.  In no time you will be an expert.  Like anything once you practice it enough. You get the Midas touch. -Warrior

SharkFan, Box is on its way! And then Karma! As I returned from the post office, a box was at my front door. It was my welcome package from Convatec! ;-) Warrior, thanks for the kudos.

Sharkster,

I posted a reply on here last night... it said it posted... but now I see it did not. Wacky website! Also replied to someone else's post early this a.m. and don't even see that post anymore. Wacky. What I wrote you last night was this... having your operation scheduled in the future instead of being done as an emergency (as so many of us seem to have done) gives you time to consider where exactly the best place to have your stoma would be. Think about if you want your bag below your beltline so you can hide it in your pants (easier to conceal, you can tuck in your shirt, but harder to drain if you need to drain it frequently), right side or left (your surgeon will probably have a preference, but either side can be accommodated). This affects things like which side of your body you'll never sleep on again, wearing a seatbelt, etc. You also don't want to have them put it on the natural crease line your abdomen makes when you sit or bend at the waist, or your barrier will never seal. Also think of a secondary location choice. When they come in to mark your belly pre-op they'll put two locations on you with a Sharpie. Yeah, real high tech. You might want to post the question on where as to which location folks think is the best and why. There's quite a lot to consider and if you're like me you won't think of everything. Wish I had an opinion on where mine went... there's a lot to consider.

Regards,

Bob

Very interesting what you have posted and dead on for sure, Bob. Thing is, I recall not having a decision on where to mark my stoma. If it was, and still is, my understanding, stomas for ileos go on the right side... and colostomy bags go on the left. I think it has something to do with that silly valve that attaches to the large intestine for ileos, and where they cut you for the colostomy... ihmmm.. I do know they can be relocated... I can't imagine "stretching" the intestine from the right to left unless they left a good amount of intestine to do this.. hmm.. good points though, Bob. I just don't think the patient has any say in where the stoma actually goes... now he can ask the doctor about this for sure.. no sweat. Chances are the doctor might even pull back at the amount of information Shark fan has already. 

They put that damn thing right on the belt line, man. In fact, they asked me to put on my pants so they can see where I keep my belt to get an idea of stoma placement. Of course, I didn't have the time like SF has right now to investigate and question. They just did it. 

Also.. I don't know how many of us suffered the infamous Ng tube.. or feeding tube like I did.. but ask the doctor.. what the hell are you gonna look like when you wake up?? I had tubes and one of them was totally useless for feeding, which ended up with complications later on. That damn thing should not have been there at all. Four tubes, I think I had.. I know one was for draining.. can't remember the other ones.. boy, I was pissed they cut me for the feeding tube.. who ordered that?? 

So ask the doctor about this.. you do not want to be hooked up like Frankenstein. ---Warrior

Hello Warrior. We obviously all have different experiences with medical staff. I spent ages with the stoma nurses pre-operation, discussing the pros and cons of where to locate the stoma.  Eventually, I decided on a point just below the belt line  and tghey marked it very clearly for the surgeon, who subsequently placed it in that exact position. I found out later that the stoma nurse was also the wife of the surgeon, so perhaps there was an extra incentive to put things just as instructed!! 

Interestingly, over time, I have contemplated whether my initial thoughts on the placement were correct or not, as my needs changed with the change of circumstances and routine for the management of the stoma. When I was using 'bags', it made sense to have the stoma below the belt line. However, once I started irrigating; plus having a parastomal hernia, it would have made more sense to have the stoma directly on the beltline so that I could wear a plug and have a hernia belt directly over the stoma. Who can tell what situations might be going to arise in future, which may dictate that I would reappraise this situation yet again. 

For someone like SharkFan,  who is seeking advice and comment pre-operation, I would say that what might suit you one year, might change with your changing circumstances. I just hope that you can make a reasonable decision and not regret it a some later date.

Best wishes

Bill   

Hi guys,

Frankenwarrior........you're scaring the crap out of the guy with your "14 tubes hanging out of you that the nurses keep tripping on and pulling" thing. Ha-ha..just kidding. The bottom line is the first 1-4 days after any operation of that magnitude are going to suck, but you'll get through it just fine and quickly forget about it to focus on any new problems you're having........like your barrier leaking or your dog shredding your bag when she paws you for attention. Don't think about those first couple of days too much, just consider them dues we all had to pay and don't expect them to be fun. Just bring your laptop or tablet with you, as daytime TV absolutely sucks and will drive anyone with a brain to want to jump out the window. That's why hospitals don't have windows that open. It's not because of germs, it's because of daytime TV. As for stoma placement, I believe you are right, Warrior, in that you have no say....if there is still a colon to be dealt with. That's because the colon has a left and right (ascending and descending sides) and that limits what can go where. With the small bowel, it's just a jumble of rubber hose in there and it can exit anyplace. So since there's no colon involved for the Sharkster, the surgeon will likely have the luxury of having two sides of the abdomen to choose from for his poke-thru. Maybe I'm oversimplifying and there are other reasons one side is preferred over the other, but I've seen many folks who needed to have their right side ileostomy stoma "fixed", and rather than dick around with the troublesome abdominal wall at the current site, they simply move it to the other side and make a fresh new hole. So seeing as they can do that, I assume for Sharkster he'd have the option of picking his side. But certainly worth talking to the surgeon about PRIOR to the operation. I'd say that for an Ileo, although it would be nice to be able to hide your bag in your pants and be able to tuck your shirt in.....the more liquid nature of Ileo output would make that scenario not much fun.

Bill, you're right about never knowing what the future brings. That's where "educated guesses" come in. No one should fault themselves for a decision made if it was the smartest thing to do at the time, as no one has a crystal ball. I hear Warrior has "crystal balls", but that's another subject. But your point is well taken. For me, no matter what I would have chosen, it would have ended up being wrong......so I hear ya.

Got to go find some food!

Later,

Bob

Bob... The thread said "What to expect." I was just cluing him (sharkfan) into the idea of waking up afterwards... What to expect. I had a tube down my throat which, becoming awake, scared me so badly I was gonna pull the thing out myself. I had the drain tube and gastro tube... which they couldn't do anything about, but you think removing the tube from the throat before waking up would have been nice, huh? 15 minutes they said... wtf??

Now all of you go through surgeries well informed. I did see a sign language interpreter there... do you honestly think I was aware enough to see her?? I was going nuts trying to figure out my situation. Unable to see... hear... talk... You think they'd spare me the added trauma I faced in those 15 minutes...??

All I'm saying to sf is be informed about what they're gonna do to you... no surprises unless something unexpected happened.

I didn't have that luxury. Sure felt like Frankenstein to me... Warrior sans Crystal balls.

Yo Warrior-a-roonie,

I was just funnin' with ya........it's all good. What happened to me that I didn't expect this last operation happened in ICU recovery. I've never had any bad reactions to anesthesia before, so wasn't even thinking about recovery.....it's easy peasy............but this last time I started coming out of it slowly and had tunnel vision........like I was wearing a helmet with only a slit for vision. And I could neither speak nor move. Took me a few seconds to realize where I was, but I also could see that I was restrained......my arms and legs and waist were strapped to the bed so even if I could move.....I couldn't. I was totally paralyzed. Worst of all they had put something in my mouth to stop me from biting or choking or something. It was a big black plastic bite block of some sort......and it was causing a gag reaction that the ICU staff didn't notice (because I couldn't move). So there I lay, peeking out a slit in my vision, choking and totally panicking! I'm thinking "Like holy hell.....I survived the f* king operation and I'm gonna choke and die in recovery". I've never felt that panicked and helpless in my whole life. What a feeling that was. So I'm freaking out and unable to let anyone know and I see a few feet from the bed there's a male nurse looking at me. He didn't know I was gagging but just kept looking at me strangely. I'm not sure what a gagging paralyzed person looks like and I'm guessing he never saw one either. I started thinking this is how a severe stroke victims must feel........you're trying to communicate, but can't.....and people can't tell you're trying to communicate. After what seemed like an eternity I started getting some control of my motor functions and motioned to him by waving my hand in the restraint. When he looked at my hand I made a "writing in a notebook" gesture and he brought over a piece of paper and a pen. I scribbled "choking" on it. Then the idiot just stared at me for a few seconds and another nurse came over, read my scribble and told him it was ok to take the big black plastic thing out of my mouth. He did and it felt wonderful. Good thing I was restrained or I would have jumped out of that bed and kicked his ass Jersey-style. I said "why the hell did you have me restrained??? He told me he was sorry, but that it was SOP in the ICU because many times people come out of anesthesia really mad and violent. I said "maybe they're not mad THEY'RE F* KING CHOKING"!!!

Anyway they then told me I was in the ICU because my blood pressure (which is normally nice and low) sunk too low and that automatically brings you to the ICU. So even though I'd been through similar operations twice before without any hiccups..........you never know what to fully expect. But if there's a next time I'm going to write on my forehead "REMOVE CHOCK GUARD AS SOON AS VICTIM BEGINS REGAINING CONSCIOUSNESS.....YOU DUMB MORONS".

Regards,

Bob

Hey guys,

Thanks for all the great info and insight. About 3 weeks prior to the surgery, I'll be meeting with the stoma nurse regarding placement. The team seems very supportive. And, as noted by many of you, I have the benefit of prior planning. All your input gives me info on how to evaluate their suggestions. As for the post-op 3-5 days in the hospital, I'm already pulling out books I've wanted to read and getting a new battery for my laptop.

As I've said earlier, this is a tough situation to talk about, and I appreciate any and all info you've given.

SF

Knowledge is power. The student will become a teacher. Will you have family with you at the time of surgery? Gotta have the homies.

Hey all,

It's been a week since my ileostomy and proctolectomy. I was/am feeling far better than I expected to be. From the first visit with the docs after surgery, they were saying I was doing amazingly well. I was discharged a day earlier than expected. They had me up and walking the next day. I'm figuring out the dehydration issues slowly and sitting on my waffle pad. I'm actually looking forward to getting back to work and playing some golf. I wish I had done this years ago.

I was lucky to have a month's worth of notice before my surgery. That gave me the opportunity to find this site and benefit from all your experiences and advice. You all have been a great help in getting me mentally ready for this. PETey, thanks again for the supplies. I wore a bag for a weekend and got a good idea of what to expect. Prior to surgery, I met with various staff who were prepping me on what to expect. They were surprised at my knowledge and attitude. To that, I owe you. I'm hoping that others find this chat and find it as helpful as I did.

To your health now and in the future,

SharkFan

Hello SharkFan. Thank you so much for your feedback, it is very much appreciated. I hope things continue to be positive for you in the future.

Best wishes

Bill