pouch removal

I don't have to get up at night at all to empty my bag. It took about a year to get to that point, but now, as long as I don't eat right before bed, I can sleep 8 hours or more. One of the best things about having the pouch out

Like JillM, as long as I don't eat before bed I can go through the night without emptying. I also empty right before bed regardless of how full the bag is. Good luck with your surgery!

I am a couple of months out of surgery and get up once a night to empty. I also take an Imodium before bed. I do eat dinner later than I should and, if I wanted to eat a lighter/earlier dinner, I would have less need to get up.

Having a vented bag has helped with nighttime management because I don't wake up with the bag puffed up like a balloon anymore. I learned the hard way what happens when it's puffed up and you go to empty and all the air rushes out at once (hint: it's not just air that rushes out!).

Good luck and keep us posted on any questions that come up for you.

I can go all night without emptying as long as I don't eat anything sugary before bed. It was hard at first adjusting to the bag at night. I used to worry that every feeling was a leak and I'd get up often to check and empty it. It may take a few months to trust your seal and establish a pattern of eating that helps you not worry about nighttime leaks or too much gas filling it up.

Well, my uterus is history, in my past life! Lol! But as for sleep, for the first time in over 20 years, I can now sleep over 8 hours without having to get up. To me it's nothing short of a miracle! I thought I'd NEVER be able to do that, but my new ileostomy is, pardon the pun, a dream come true as far as sleep goes! If I eat close to bed time, I may have to get up once, but that's rare. I'm now a little over four months post op, and can sleep like I did when I was a kid, it's truly remarkable. I was only 21 when my colon ruptured and my journey of insomnia, surgery and pain began. I'm now 44, and barring any complications, 8 major surgeries and 4 intestinal diversions later, I can FINALLY look forward to a pain free, restful future, good luck!

Cheers,
Eric

Thank you IseeUC, hart155 and Jill ; ) I really appreciate your responses. I am getting much more excited to be rid of this rotten thing than I am nervous about it. You all are soooo great, it makes all the difference knowing how well things are going for you all. Eric, lol! I can't wait to sleep like a kid again! I can't remember what good sleep feels like, I swear I am in a fog half the time because my sleep is so broken up. L. Mac I know your not far out from your removal, how are you doing? How long were you really unable to do much? The dr. said 4 weeks out of work. I lift mail trays and I move around a lot when I rip statements apart and fold them up. I think I will be okay but 4 weeks sounds fast. My son is almost 8 so unlike when they first removed my colon I don't have to worry about lifting him. He was 11 months old when they took it out. The dr. said he could leave the pouch in there but I was like no thanks I don't want to ever feel the need to go again. I did ask about tying my tubes when he was digging around in there, that was a no go. ( made sense to me : ) I know there isn't much of a chance anyhow but I guess the hubby will have to get fixed. Anyhow so L. Mac you are having good luck with a vented pouch? You should let me know what you use. I know it will take time to get used to it and not worry about it leaking or whatnot. Do you all ever get leaks? I don't remember my temp. one ever leaking. Well not at night anyhow. Thanks again for all the support, it means so much!!

Wow, four weeks sounds too quick. My surgeon did an extraordinary job and managed to do the whole procedure laparoscopically, and he still put me off of work for four months for recovery. And that was before I had a couple of obstructions and was hospitalized again that following week. As far as lifting goes, I was instructed to not lift anything heavier than a gallon milk jug - I can't remember for how long, but I think it was for three months.

I recovered super fast from pouch removal. I was back at work in 4 weeks, but I had a desk job. Within 4 months I did a 7 mile hike at Mt Hood. As with all things medical...it is totally dependent on your body and your experience.

Four months, wow. Jill I remember you telling me you went back after 4 weeks, that is amazing. I work in a statement processing center and when he asked me do I lift things at work I was like no. You just don't think of stacks of paper or trays of mail as lifting but I do lift a lot at work, my boss says they will probably have her fill out a form and break it all down, my fear is I will go back with weight restrictions and overdo it because I move things around a lot when I work, I am really going to have to pay attention to what I am doing. ugh..... I had a friend recommend the Phoenix magazine and was looking through one and I was shocked at the amount of products out there, it is overwhelming! is it really that loud and stinky? man I am a little more nervous then before I saw all the stuff in that. : (

In the beginning things can be noisy, but it settles down. Now my stoma only makes noise if I eat spicy foods or something unusual. My regular diet causes no real noise issues. As for smell it is highly variable. I'm a less is more girl so I don't worry about it much. m 9 drops and spray work great. Some people throw a tic tac in the bag to help odor. There are lots of tricks if you find it's an issue for you.

Don't let all the gear scare you - you can do this with very little if you want.

I find my stool to be much less stinky than before I got my perm ileo. Everything moves through the system faster so foods like fish still carry their odor but, compared to the gross smell that came with years and years of pouchitis, my new plumbing is much easier to handle. . . Nothing that an occasional spray of air freshener doesn't address.

As Jill mentioned, there are products out there to deal with odor. I hear great results from M9 drops. My WOCN ordered a deodorant gel to put inside of the bag because I told her I was concerned about odor initially, but I haven't even opened the box.

Regarding when you'll be physically ready to return to work, I think you should listen to your body and trust your instincts about when you are ready. We all need to find our own balance and limits. Maybe you could transition back slowly, eg - work half time your first couple of weeks and see how that goes. My primary physician says to not do any repetitive motion, including dishes and vacuuming, for three months. (I like that idea!). Maybe my doc knows me too well, but he warned that pushing physically during the first three months could interfere with healing and cause setbacks, and he told me to stop doing so much. I'm not a person who enjoys sitting around, so its been a challenge following his orders, even though I know he makes sense.

Good luck!

Thanks Jill good to know your isn't really noisy for the most part. I like the tic tac idea, that sounds easy. I will try not to let all the products out there scare me Jill ; )Lynne thanks for your feedback, it will be hard for me to relax at home also. I tend to do all the laundry and cleaning, mowing, etc. around here because my husband works long hours and I only work part time. Plus I just need to be doing something : ) It is true that everyone will have their own experience with the healing process, I just need to do whatever the doctor tells me or not do I should say. If I feel that I am not able to be productive at work I will just tell them I am not ready to come back. Lynne do you know what you ate that gave you a blockage so fast? What a bummer that must have been. It is coming fast now two weeks from tomorrow. Thanks for the honesty ladies!
Till I have more questions

Karen

Well I am home from the mayo clinic. I had my removal last week and it sure has been a rough road. They nicked my uritha and had to fix it and put in a stent. My guts wouldn't wake up so they jammed a tube down my throat to suck out crap from my stomach. I was there eight days and I feel so bad, I can barely force myself to eat even a small amount of food. So much pain in upper diaphram I assume it is gas. Feeling sad, no regrets but still this is a lot harder than I thought.

Sounds like there were some unexpected issues too - that is never any fun. I hope that this is short term and that soon you'll be feeling the benefits of your decision. Remember, this is a marathon, not a sprint. Look at progress week to week not day to day...bad days happen a lot early on and that's normal.

I'm sending you lots of positive energy!

Thanks Jill, I appreciate that! The stool is so watery, I have been eating a little here and there the thickening foods but still pretty watery. I removed the pouch that I put on Monday and there was a leak. I am worried that is happening again now. I forgot how you have to get that adhesive off and I don't think I got a good seal that Monday. Today I think I did better job but still doubtful. I don't like how far down it hangs either. I think it's 12 inch, I saw a holster 7 inch. That seems to short, I guess I will need to try some different stuff. If feels so heavy all the time, I have a belt. Just think I should wait for the incision site to heal. I just don't want to mess up my skin, my temp one was so hard to keep the poo off my skin. Ugh thanks for listening!

Karen

karen sorry you suffered some complications. However, With all of that, you did get out of the hospital pretty quickly so pat yourself on the back for that!

But you are very early out of surgery and you will be on the uphill to healing now.

As for your ileo.. Coloplast sensura makes 10" bags. They call them "midi" size. I LOVE them. Call them and ask for samples. Get them to send you regular and convex wafers as you probably don't know what will work best for you without trying some different things.

Also,can you meet with an ostomy nurse - not a home nurse, but a true ostomy nurse. He/she should be able to help you work out what works for you to get a well fitting AND comfortable system.

Lastly, remember, you are still in the recovery phase. The pouch removal surgery is the biggest/hardest surgery out of any of the jpouch surgeries. So please take it easy on yourself. Try to keep eating - little bits very often, focus on protein when eating, stay hydrated, and rest rest rest. Evaluate your progress every week not every day. You will get through this. And my final suggestion, get outside and sit in some sunshine and fresh air. It does wonders for your spirits after being in the hospital and working through your recovery.
best wishes,
Liz

Liz, thank you for the tips on the bags, I will call tomorrow. I did get outside yesterday for a few minutes, I think I just overdid moving around to much though. I have tried to take it a little easier today. As I was afraid of the seal was leaking again when I took off the bag today. My husband helped me put a new one on and I feel more confident about this one. I did put on the belt though. What I have now is blood in my bag/stool. The stool is really stinky to. I am hoping it will stop but i will call the drs office in the morning. I live a few hours from the mayo clinic and luckily they gave me some local numbers for ostomy nurses. I will call them also. I did manage to thicken up the stool and am eating very small amounts about 5 times a day. I am just praying nothing serious is causing the blood. Thank you for your feedback, it is very much appreciate! I hope you are doing well at this stage of your recovery!

Karen

have you ate or drank anything red? red gatoraide, beets, etc? If not, then you should call your surgeon. You are so soon out of surgery that you might just want to check in with him/her to let them know what is going on.

I am anti-ostomy belt, just for comfort purposes and I am petite. However, I would definitely use one in your early stage if you think it might help you prevent leaks.
good luck

Nothing red, been only drinking water and eating white rice with a little ham and cheese in it. I did call the dr and they said they thought it is probably old blood but I did stop taking advil too just to be safe. It has cleared up now, no more blood. I also made an appointment with a local stoma nurse so that will help. I have to give props to my hubby though we changed my bag today and it hadn't been leaking at all so he was a huge help in the last change. Crossing my figures this one went well also. I am wearing that little 1 inch belt which I would rather have the wider support belt but I have to wait till further out for that one I guess. Yeah I would prefer not wear it either, although I am normal size ,I don't have a flat stomach and it helps keep the appliance flatter. I finally slept in my bed last night instead of the couch and it went pretty well so I am feeling mentally a lot better, physically still pretty exhausted but it will come. Anything you do about odor control? These drops don't seem to do much. I have seen and heard about those packets you drop in for absorption and I have read they really eliminate the odor. Ever use those? Thanks for the advise!
Karen

karen I use hollister M9 drops. They work great; however you must use a whole lot more than a drop. Basically I squirt a fair amount into the bag after emptying.

Also generally as your system settles down and recovers more odor decreases some. And you will find that what types of food you eat definitely affects the odor. Eggs and fish...yuck. But again the M9 drops work great for me. I just use a lot of it.

I am very sorry to hear about your current challenges. As always, Jill and Liz have provided great advice. Glad to hear you are seeing a WOCN. I encourage you to see him/her as often as needed. Mine has been fantastic - I saw her twice the first week, then once a week for a couple more weeks, then as needed after that. The education and patient support I received from her really helped me become confident and do well with my appliance and its application.

I've never heard the "old blood" explanation before, but I would continue to keep an eye on your stool no matter what. Also drink tons of water. Being dehydrated would make your situation worse.

Please remember to be patient with yourself, too. Even when you are feeling better physically, it might take additional time to feel 100% - including feeling better emotionally, making any lifestyle adjustments, etc.

Have you tried using a convex bag? I do use Coloplast, but the midi was too small for me. The regular sized lock and roll Coloplast pouch rolls up to be shorter than the Hollister, but it's not so short that I empty it all the time, so it's a nice happy medium for me. As everyone else has said, it takes experimenting with different brands and models to find what combo works for you.

Hope things improve and please keep us posted.

Thanks for the tip Liz, I am sure I wasn't using enough drops to make a difference. I am mainly just trying to find odor control before I go back to work. I did order some samples from coloplast and would like to try the convex wafer. I hope when I see the stoma nurse tomorrow she will have a sample we can try on and she can let me know if that would be a good fit for me. Thanks Lynne I think that sounds like a good size bag and I will give it a try. I am also increasing my water intake now that my stool is firming up. I was drinking water all day but just small sips as I didn't want it to just go right through me. I have my moments when I get pretty down but they are getting less and less. I know I need to give myself time to adjust to this new way of life, it isn't going to happen overnight. I know when I am confident in my appliance I will worry less and feel sooo much better about everything. To be honest I am still pretty uncomfortable with my stoma. I get pretty shaky and anxiety filled when it is time to change my bag, grateful my husband is willing to help me out : ) I hope I get comfortable with it sooner than later. Anyhow no more blood and I am taking very little pain pills now so everyday is better than the day before. I know I am moving in the right direction. Thanks for all the tips and encouragement all!

It will get better!

I pushed hard to advocate for having the surgery and, even though I had had a temp ileo before and went into the perm ileo with eyes wide open, I was so grossed out at first that I wouldn't even look at bag. Flash forward a handful of weeks and I was happier and healthier than I'd been in many years.

There are so many truly helpful people on this site and I hope you will read old posts, if you haven't already. (I didn't mean to imply earlier that it was just Liz and Jill -- I was simply responding to what they had written directly above.). I learned many useful tips and got much-appreciated support from this site as I was making my way along my path to recovery.

You can try immodium to help thicken things up...take it regularly for a week or so before deciding if it works for you or not. I take two at bedtime to help minimize output during sleep. If I plan to go some place fancy and or without a lot of bathrooms, I use two immodium before I leave. Start with one, but take it every day for a week as it seems to have a cumulative effect...

Thanks for letting me know you were grossed out by it Lynne, that makes me feel better ; ) I to went into this with months to prepare myself for it and thought I would be okay with the little bugger. I think its firm enough but then again I have only been eating things like rice and potatoes. I need to start adding in more things to my diet and see what happens. I will try the immodium if things thin out as I add more foods. Is it just to thicken or does it slow things down also? I am having some concern about clothing though. I still seem pretty bloated in the belly and even the most comfortable clothes seem to tight on me right now. Like uncomfortable not a fashion statement. It has come down a lot, I hope it will continue to do so. I know what you meant about Jill and Liz ; ) So many wonderful people on here willing to share their experiences, it gets people through the hardest of times : )

karen no worries about that belly bloat. It will go away. Sometimes it has taken me two months after a surgery for it to go away. I even went out and bought some "fancy" sweatpants as I couldn't bear to put on my real clothes when the belly bloat was so bad. With that in mind.. what you may be doing appliance etc wise may need to change as belly bloat goes down.

And kudos to your hubby. My hubby, who is grossed out and has to leave the room even for a blood draw, looked at my first ileo and stoma way before I was every able to. And without him, I don't think I would've ever built up the courage to put the kit together and get things changed, etc.. with my first ileo. And even after my last surgery (ileo #4), he would come in the bathroom after I was throwing a fit with a leak, etc.. and calm me down and help get another kit back on me.
bless all of our significant others!

kmj,

Where did you have the surgery? both of mine where at the U of M, Dr. Rothenberger

Liz yes thank god for the people in our lives willing to help out! I am so grateful for my husband. Glad to hear my belly bloat should still be coming down, I just want to be comfortable. You are on your 4th ileo? How are you doing? Do they keep having to put them in different places or no? My temp. was on the right and my perm. is on the left. Winnie the pooh I had my surgeries done at the Mayo clinic by Dr. Cima. I did get in to see a stoma nurse yesterday, overall she said I am doing a good job. She thinks I will probably benefit from a convex waffer but we are gonna hold off awhile if we can giving the area more time to heal. She was very kind and I am glad I went to see her, I will follow up with her in a week.
Karen

Sorry to hear you've had such problems! When I got my temp ileo it took me a couple weeks to get comfortable emptying the bag, and a couple of months to get used to changing it.

A belt can help keep the bag flat, but be sure not to tighten it too much, as a sore might develop where the hard plastic rubs against the peristomal skin. As far as odor goes, I find that garlic, seafood and eggs tend to cause the most odor, while bananas kill the odor almost entirely. Too bad I don't like bananas more....

Good luck!

I'm a little late to this post, but thought I'd throw in my two cents.

First of all, I seem to be the opposite of some other people in that I seem to have more output when I'm hungry. Maybe it is the sugar before bed problem, though? Starting candida diet so we'll see. I get up once a night, but a also wear the smallest bag. Vent works great until I get it wet (I swear those stickers don't work at all sometimes!).

I am pro-belt. I don't fell comfortable without one. Makes me feel much more secure. Way uncomfortable when you post-opt, though. And try different ones, the one they gave me from the hospital was terrible!

I'm way to late for this part, but maybe it will help others. I had my tubes tied during my k-pouch removal transition to perm-ileo. The gyno had me first, then the gastro surgeon. (I was at UCI).

Clothing: This was a huge worry for me also, but I promise it gets better. It was hard at first to get rid of clothes I used to love, but my theory is if you aren't comfortable in it, get it out of your closet. I buy pants much bigger in the waste now, and love yoga pants (sometimes you can find some that don't look too informal). When you are healed up, buy yourself some spanx for those outfits that are a bit tighter (or when your wearing a looser skirt/dress and think the crinkling when you walk is too loud). There are lots of off brands out their with lighter material. It took me two years to finally feel like a have my wardrobe up to snuff. My hubby gives me a hard time sometimes, saying I shouldn't worry so much about it showing. I tell him we'll talk when he's the one with the poop bag!

I was extremely unhappy when I first got the bag. Felt like my life was over. It took about 4 months for me to get confident enough in my appliance, and to start to see all the good things that came of it. Now I can't imagine going back!

Hope you feel better soon!

Rachel

ISeeUC I am not a huge banana fan either ; ) Rachel good to hear they did tie your tubes, it makes sense. Never really got a good reason why they wouldn't do it just that they wouldn't do it. The hubby will get fixed next year. I am pro belt too at this point. I know I need it plus I feel weird without it. The bag seems so heavy and to really pull on me. I still am wearing the little one inch one and look forward to when I go back to the mayo in a few weeks and get a bigger 3 inch belt. I remember I had one like that when I had my temp ostomy. I do feel much more secure with it. I just need to get a good system. It is bad enough we have to live like this but I am pissed that I am in pain sometimes or even just uncomfortable like it is digging in. I do hope with the stoma nurse helping me we figure it out soon. For sure I still have my selfpiting moments when I just cry but then I turn on the news and listen to all the horrible things going on in the world and remember things aren't that bad. I kinda live in yoga pants now : ) I hate winter but at least with it coming I will have the season for lots of clothing and big stuff and time to figure it out. Thanks for sharing your tips and story. It helps me to hear you all talk about getting to a happy place with your ostomies even if you didn't start out there!

Just wanted to tac on how well I am doing these days! I am soooooo happy with my ostomy! I am eating, sleeping, living like I have not in years. Things are going so well. To anyone out there who may read this that is on the fence please know how well you can do without that pouch, I was a prisoner to mine. Life is good!

Thank you for letting us know how well you're doing! It's nice getting your life back, isn't it?

Thanks for the not ISeeUC! It is just wonderful! I am very grateful for my little stoma : ) Take Care!

Thanks for all the info. I am having a permanent ileo and jpouch removal in October. Hope I will start to feel better. Have had pouchitis and leaking problems for a couple of years and I am so ready for a change.

Ditto, HollyHM. I just read KMJ's thread from start to finish and it only confirms that removing my pouch is the right decision. I can't wait to get back to my family and friends instead of feeling like I'm disappointing them (and myself) all the time.

I know. I am so sick of worrying about finding a bathroom, wearing a pad, leakage and other problems. I have had my pouch 20 years and I have had a pretty good run. Started having real problems about 2 years ago. As you well know it is a tough decision to make. I certainly do not want more surgery and I have been told that it is more complicated than the j-pouch surgery. Only thing to do is place it in God's hands and in the famous words of Elsa "Let it go. Let is go."
When is your surgery?

After the first six months of hell after takedown until being put on Cipro, I had a pretty good run for about two years. I never really had that easy, "I almost forget I have a pouch" feeling, though, and the last year has been a lot of physical and emotional pain. I don't have a scheduled date, just know it's as soon as possible after something very important I have to do in October. I agree, it's not a decision to be made lightly. I asked my surgeon a ton of questions and read threads on here from those who went through it (under the forum "ostomy and skin") and there's no doubt in my mind anymore. Still, like you, I'm nervous about having another major surgery. Do you have a date scheduled?

Duh, we're under "ostomy and skin." I gotta get some sleep!