A sincere thank you to the entire K-Pouch community for all the information contained in this forum and especially for the PM responses. I had my K-Pouch surgery at the Cleveland Clinic with Dr. Dietz on December 21st and am very happy I had this surgery with Dr. Dietz. Although I am still about 5 weeks post-op (I still have my Water’s catheter inserted), I am so glad NOT to have an ostomy bag. I was a bit hesitant and very anxious about the surgery knowing I would be undergoing quite a change. But now that I have some familiarity with what the future brings – life without an ostomy bag – I am do not regret or question my decision. I still have some way to go to fully work my new ‘plumbing’; the surgery is not easy especially because it affects the entire core of your body. You never know how much you use your core until you cannot because of pain…and there is pain. But the body recovers at an amazing rate of speed. With several weeks’ bed rest and light walking, you will resume some sort of energy level. Eating has been difficult simply because I have to SLOW DOWN when I eat, chew thoroughly and re-introduce common foods that I loved prior to the surgery. I just haven’t found balance yet; gas is my worst enemy as well as bloat. So I am confident it will come together soon- it is still very new. I must remind myself to stay hydrated because dehydration can become an issue quickly. As suggested by this forum, I drink grape juice, alternating with Miralax to reduce thick stool. Reason being, I am only eating pasta, soup, rice, very bland (but thickening) foods since my appetite has been on and for the past five weeks. I’ve tried other items and I know right away (i.e.-painful gas) if it is too early. All in all I am progressing and look forward to being 100%. If anyone is contemplating a K-pouch for whatever situation, I encourage you to read and use this forum to your advantage. It helped me tremendously in deciding I wanted this surgery, whereas it may help others decide a K-Pouch is not for them. Once again, I extend my sincerest gratitude to all members for sharing their K-Pouch experience.
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What wonderful new Kara,
I am so happy for you...it sounds like you are on your way to a good recovery.
Sound also like you are doing things exactly right...keep to simple foods, do not mix too many food groups at once (test your foods one at a time to see how they react in your pouch) and keep a food journal going to track things as time goes by.
Dairy is not your friend for now...it causes gas...so do all sorts of veggies...you will figure out what works for you.
If I have one singe piece of advice to give to you it is...take it easy. Do not rush or overdo it...give your body and stoma time to heal.
Follow the rules...use lots of lube. Irrigate if things get too thick and keep chugging that grape and prune juice.
Sharon
Kara
Congratulations and i am so happy to hear that your recovery is going well. I too had dietz for my k pouch surgeon, in nov of 2015. when are you going back for your 4 week check up and the big switch over to intubating? that will be a liberating day!
this forum was initially so very helpful in my making the decision to have the k pouch surgery and now with managing the intubating, eating and the such. i too add my thanks for all the info and support.
the stoma CC nurses have been so wonderful. i too am from out of town and have called them several times. i must admit that their thinking i could intubate in the airport rest room, after only two practice sessions in the office--mind you while standing--was highly optimistic. i messed up, got frightened and waited until i got home, four hours later and woefully overdue to evacuate. in hindsight i wish i had stayed in cleveland that night and practiced on the hotel's toilet!
i second all of sharon's suggestions, especially 'take it easy'. it is a huge surgery and your body still needs to heal. follows the suggestions, call the nurses if you have problems and irrigate the thick stool. i'm still learning and am about to hit week 12.
before the surgery--i still had the j pouch--i had terrible SIBO, was on the low FODMAP diet, some lactose intolerance plus chronic pouchitis. now, all of that is gone. i eat lots of cheese and have no gas. as is often mentioned on this forum, everybody reacts differently to foods and situations. a food diary helps to isolate what is causing what symptoms. i also irrigate quite a bit because the output is often thick and i might be wrong, but i think it helps in preventing SIBO. (if somebody knows this to be the fact, or wrong, please inform me.)
keep us posted on your progress and any questions. we learn from each other. janet
I agree with Janet...some people do say that irrigating helps to prevent SIBO...not sure if anyone has actually done a study on it or not but...
Generally irrigating helps to clear out all of the gunk that is hanging around on the bottom of your pouch...meaning that if you do it regularly things do not have too much time to fester and get nasty. At least that is the principal behind it.
I do it constantly only because prune juice cost more than wine in this country and is hard to find. (too bad that I am alergic to wine!)
Your stoma nurse is your best friend...call her regularly...she can help especially when you are in a flutter...
Janet, never go too long without intubating (for now)...practice using a small squirt bottle (those baby water bottles with a squirt or sippy top work wonders)...I fill it up before going into the stall (I get fewer looks from my students & strangers then when I filled up a 60cc syringe!) ...then if you need to irrigate you can use it to fill your syringe (I just open the syringe and squirt the water into it from the top) or if you just need to rince you can squirt directly into the tube (aimed into the toilet please!)...I have found 1 or 2 bottles with the exact right dimention to squirt into the tube with a perfect seal so that I can actually irrigate myself that way too...saves tons of time...it is all a balancing act...
Good luck girls...you are my new Heros!
Sharon
Thank you for your responses. I go back tomorrow to remove the Waters Catheter and start with my new stoma. I am very nervous and unsure how this will all work. I too am traveling up for the day and then driving home, so no time to practice in a ‘clean’ restroom. The stoma nurses are wonderful and now that I have their direct message line, I know I will be calling. Your posts prompted a couple questions I have been mulling in advance of my tube removal:
1-Sharon may have answered it, but when I am in a public restroom, how do you rinse the tube in the sink, inconspicuously? I did get a baby bottle to fill with water but think it is only large enough to irrigate, not rinse my tube. Any guidance?
2-I read in one post about the easiest position to irrigate and public restrooms. When I irrigate now with my catheter and leg bag, it is easier to kneel than sit on commode. It’s all okay because I do it at home or at work in a private bathroom. However, how do you all handle public restrooms? I do not like public restrooms at all and have been known to skip going to the bathroom so I get home to my own bathroom. I know I will have to use a public restroom going forward with my K-pouch. What position is easiest when irrigating and any suggestions on how to keep yourself ‘clean’ in public restrooms?
3-When you all get gas, sometimes irrigating doesn’t expel it all or I irrigate and 20 minutes later it has built up again (very frustrating when I am trying to sleep). I use Gas-X quite a bit but isn’t as effective as it used to be when I had my ostomy bag. Any suggestions (other than change my food choice)?
4-Finally, any odor you all smell from your stoma (aside from mucus)? I smell stool but think it may just be the catheter or collection bag and I am more sensitive (my significant other doesn’t smell it!). But going forward if I eat something that may not agree and is odorous, will the odor ‘leak’ from your stoma?
I know I will panic my first few times, but I breathe, relax, and it all is okay. I did have to go back to work after 4 weeks, so I am exhausted, in some pain and still cannot eat very much. But it is ALL worth it! Thank you again!
kara
first the easy answer. the smell will go away after you have the external plumbing removed. and no more permanent erection!!
can't believe you are back at work and dealing with public restrooms!! please try to get enough sleep and keep up the great attitude (if for no better reason, nurses like to work with upbeat k-pouchers.)
one idea, based on my horrific airport experience, is to do at least one trial sitting on a toilet at hospital. if not sitting, then knelling (try putting paper towels on the floor.) they'll tell you to stand, i think, but the over splash might be horrendous. in hindsight i think the toilet trial would have better prepared me.
ask lots of questions as i found their handouts didn't have enough info.
i'm not sure what a baby bottle is. baby area at drug store, but didn't have a suitable bottle. would like some info on that.
instead i use an enema container that has been rinsed out. when not in use it squeezes down to near flat and easier to pack. when finished intubating i squirt some water through the end of catheter to clear out the sludge. then stuff it in a plastic bag and another bag until i get home. best option is to find a handicapped single user restroom with your own sink.
i irrigate while sitting. just be careful when removing the syringe!! you'll learn.
btw, the syringe they provide you only sort of fits, but not great when first learning. i sanded the tip down, but eventually used another type. ok, here's another idea--take the baby bottle or enema container with you for trip home.
i found out that best insertion of catheter happens when sitting up very very straight and not looking down at stoma area, but rather straight ahead. i think the nurses told me to insert on the exhale, but for me the inhale works better.
no suggestions re gas as not a problem and i do eat lots of cheese. ask nurses. also, ask them about using Miralax. i read about it on this forum, but nurses said absolutely do not use it. i haven't, but need something. based on my cat's experience it's great--she now poops inside the box and what more could we ask for?
sharon -- if we are heroes, then you--the best--are a goddess! thanks for all of your advise and support. cheering you on for your exam this week.
kara--i think i've covered your questions, but get back to me if i haven't. and please ask about the miralax, to make certain that it's not of harm. good luck tomorrow, esp. on trip home!!! janet
It certainly is normal to feel uncomfortable using a public restroom and having to deal with the supplies used to empty your pouch. I find that the handicapped stalls are a bit easier to use and some have a shelf where you can place your supplies. Most of the time I have had no problem or discomfort flushing my catheter in the sink, and if someone does happen to see you doing it, they likely have no idea what you are doing and probably will never see you again. Flushing the catheter in the stall can be accomplished with one filling of a 60cc syringe. I found it helpful to carry my supplies in a small case commonly used for small electronic devices. If you are unable to flush your catheter (such as in an outhouse or in the woods where there is no running water), you can put it in a plastic bag and clean it later.
Irrigation in a public restroom is very similar to doing it at home, with the exception of having to bring a bottle of water into the stall with you. It helps to sit back on the seat to allow more room for the catheter and syringe. I have not used the standing or kneeling positions. Unless there is a need to irrigate (such as a thick output), you can wait and do that later at home. I have rarely found the need to irrigate, but then that’s me.
I have found that an effective way to remove gas from my pouch is to move the catheter back and forth until no more gas or stool comes out. You will likely find that gas is less of a problem when the pouch has expanded to its full size. After your valve matures (typically within a few months), there should be no leakage of stool or gas, so there will be no more odor than when you had your original plumbing. Plus, you will not fart with a k pouch. The only odor you will smell is when you empty your pouch (similar to having the bag).
One other thought for your visit tomorrow. See if they will include several catheters and several 60cc syringes for you. I have been using a 30fr Marlen curved catheter which has two side openings and a rounded tip. I find these to be less irritating to the valve than the Medina which has an open tip. Be patient when you insert the catheter and use enough lube. Once your adjustment period is over, you will realize the benefits of your new pouch!
Bill
Only thing that I would add to your recovery is for you to keep up the intake of iron in your diet for the lack of will result in anemia. Iron rich protein drinks are a good supplement until your taste buds allow meat products. Also please have your Primary Physician onboard with your new plumbing. He should watch your blood levels closely especially your Ferritin Levels.
Ray
Ok...
I use a small Evian water bottle with the sippy-tip and snap top lid.
That holds about 3 syringe's worth of water in it so I can squirt enough into the syringe to irrigate 2xs if needed...then I just use the syringe to push out as much gunk as possible into the bowel and rince with the remaining water.
Yes, grab a few 60cc syringes with catheter tips from the hospital, a few extra tubes (strait and curved if you can) and an extra leg-bag or two plus a couple of blue pads.
I put the blue pads under my sheets when I make my bed...it is a measure of security, just in case.
The leg bag is for those long car trips when you are stuck in traffic...keep one in the glove compartment or under the seat...if you are ever stuck in a traffic jam or snow storm you can just hook up and drain for a few minutes without the worry of overfilling...then just empty the bag out at a later time. Also Alway keep a couple of bottles of water with you in the car for rincing things out and for drinking...dehydration is still a danger so take care to drink regularly.
As for the public stalls...yes, if there is a handicapped toilet with sink (and running water...check first!) then you are saved. If not, fill your little bottle, put some papertowel or clean tissue on your underpants when sitting and use them as a tray.
Place your stuff on the 'tray' for easy access. Pre-cut your toilet paper to keep your hands free for other stuff!
I intubate and irrigate sitting down....I only lay, kneel or stand if I have a serious problem (valve issues)...I also carry a my purse crossbody...I open it up (still hanging off of my body) and use it to hold my little kit (I use make-up cases or pencil cases...they need to be long enough to hold the 60cc syringe and a tube or 2 and a couple of small packets of lube.)...I just unzip the purse and the kit...set everything up first on the 'tray' and then get to work doing what needs doing.
I can even keep the little water bottle filled and stand up in my purse or placed on the toilet paper holder (if it is not round!)...sometimes the handicapped toilets have a bar on the wall and I can lay the bottle down there.
I keep a clean ziplock in my purse for emergencies.
I use those mini-packets of kleenex to cover my stoma...paper towel folded up is great too...Very absorbant.
No, there is not smell.
Gas? I know that my pouch is empty once I have emptied out completly and then a last push of gas comes out...Done. You may need to move the tube around a bit or lean forward or sideways a bit to get their to push out.
Keep asking questions...
Sharon
I was private messaging with Janet and she made a good suggestion to post to the entire K-Pouch corner group. Things are going well with my K-pouch; Water’s Catheter is out, incisions are healing, stoma is getting smaller and intubating is getting easier. I completely understand all the posts by others in regards to incidents with their tubes. I can see how easy it becomes to make / have a mess and how easy it would be to forget supplies in the restroom. I do have a lot of mucous drainage and use various methods that work better for the workday and nighttime (I am still on the fence with the Ampatch). The most difficult part has been finding the right foods to eat. I have tried to go back to foods I ate prior to surgery and it really is not working. Most notably tomatoes, carrots, asparagus and salads (broccoli florets do fine-yeah!). I need to heed the advice on this forum and chop them up into small, small pieces. I have eaten pasta to the extreme and I am surprised I have not gained much weight back. I carry tweezers in my supply bag for any careless eating the previous day. I really need to get creative with food, take my time and chew. Gas issues have become less and less since my pouch is expanding, healing and I am becoming better at intubating. Bloating is my biggest complaint, but that still is related to the foods I choose to eat.
I did speak to Dr. Dietz’s office and they said Miralax once a day is okay to keep my stool thin. They did not recommend using Miralax and grape juice together however, so I mix the Miralax with water and all is well. I have developed several granulations, or skin tags around my stoma and my Primary Care Doctor will burn those off next week (as posted by others, it is not something I need to go back to Dr. Dietz for thankfully). I still experience pain, especially as I slowly try to get back into a workout regime. I am 7-weeks post op., so I figure still time to heal hence the reason for pain. All in all, I absolutely love my pouch and am so thankful I no longer have the ostomy bag. It is amazing how my attitude about my body has changed by having this great surgery by a great surgeon. No regrets and so glad to know you are all along for the K-pouch journey as well.
kara
you are doing amazingly well for being only 7 weeks out!! both physically and mentally. at that stage i was still having some doubts as to whether it had been the right surgery. it was right and i'm happy camper now.
interesting that diet's office says ok for miralax and the ostomy nurses were adamant that it was wrong. what dosage?
you'll learn with the food. takes practice, which i am still working on also. i've given up juice and have not noticed a difference. then again i drink mucho herbal and green tea and have added lemon, thanks to sharon's suggestions. read sharon's recent posts to me on her post 'test today; added picture' for some very helpful tips. never know what will trigger something in your mind.
keep us informed, and especially when you learn new info, such as the miralax dosage. thanks, janet