Has anyone used a NUVAL continent ileostomy valve? I'm currently using one temporarily due to post-op issues with a K pouch valve revision. I'm curious how long most people leave theirs in before replacing it and if you have any hints or advice for me.
Replies sorted oldest to newest
I don't think that I have ever heard of it unless it is an 8-inch silicon tube with a bulb at the bottom that you place inside and inflate with water.
If so, I had one place by the stoma nurse about 8 yrs ago when having valve problems...it was not successful for me due to the specific problems that I was having (a peristomal hernia)...
They say that it can be left in indefinitely...or at least that is what I was told...the creator of the one that I used had initially planned to have it kept in for 6 months before having surgery but had kept it over 2 yrs by the time that I spoke to him...he didn't want the surgery by then...Was very happy with the substitute.
Sharon
i’ve never heard of it, so have no advice. Sorry. However I too had a valve revision about a month ago and since then the stoma episodically prolapses. it can stick out about an inch. I also have episodic sharp pain at the site of the revision. I’m curious what your post op problem is. Thanks, Janet
skn69 posted:I don't think that I have ever heard of it unless it is an 8-inch silicon tube with a bulb at the bottom that you place inside and inflate with water.
If so, I had one place by the stoma nurse about 8 yrs ago when having valve problems...it was not successful for me due to the specific problems that I was having (a peristomal hernia)...
They say that it can be left in indefinitely...or at least that is what I was told...the creator of the one that I used had initially planned to have it kept in for 6 months before having surgery but had kept it over 2 yrs by the time that I spoke to him...he didn't want the surgery by then...Was very happy with the substitute.
Sharon
Yes, the device is similar to what you described. A catheter with a balloon on the insertion end, a thin plastic port tube that you inject 30cc of water to hold the catheter inside the pouch. The catheter folds over and is secured on a plastic disk, You just unfasten to empty the pouch. The documentation from the manufacturer states the device must be replaced every 3 months.
kim--some questions, if you don't mind. what were your post-op symptoms that necessitated the NUVAL? was it inserted in the doctor's office? and why the valve revision? thanks so much, janet
JLH posted:i’ve never heard of it, so have no advice. Sorry. However I too had a valve revision about a month ago and since then the stoma episodically prolapses. it can stick out about an inch. I also have episodic sharp pain at the site of the revision. I’m curious what your post op problem is. Thanks, Janet
I had my original K pouch surgery in 1982 at Johns Hopkins Hospital. The K pouch worked great for over 30 years, but after dealing with unpredictable leakage issues for approx 18 months, I searched for a surgeon who still performed K pouch surgeries. I'm in Virginia, pretty close to DC and Johns Hopkins, but I was unable to find a surgeon near me. The revision was done in Sept 2017 at Cleveland Clinic by Dr. Jean Ashburn (she has since moved to North Carolina and another Doctor at Cleveland Clinic has taken over my case). A new stoma site was created and the old site was closed surgically. The surgery went well, but at my 6 week post op appointment when the waters catheter was removed and we tried our first post op intubation, the stoma nurses and myself were unable to get to pass the regular catheter into the pouch. The stoma nurses requested the surgeon to the treatment room and after several attempts, he finally inserted another waters catheter and I was sent home for another 4 weeks with the catheter inserted 24x7. The surgeon suggested the issue might be attributed to swelling/healing and the need for me to lose some weight. At the 10 week post op appointment, the same thing happened. Still unable to intubate. The angle/path of the catheter has a little turn in order to insert the catheter. The doctor could only insert the catheter when I was lying flat on the exam table, and it was still difficult for him to insert. The stoma nurse suggested the use of the NUVAL valve to the surgeon as a temporary measure. I'm so glad she suggested this! It has worked great and it has been such an improvement over the large drainage bag and/or leg bag. It has made my life much more normal. It's so easy. The only downside is the production of mucous (drips like a runny nose) so I have to keep a dressing on, and change it several times a day, but the benefits far outweigh this inconvenience. I will keep the NUVAL inserted for 3 months and return for my next appointment in Cleveland in mid-February. I have also continued to lose weight since the surgery in September so I'm hoping for 100% success at my February appointment and no further surgery will be required in order for me to successfully intubate.
Sorry to write so much, but maybe this will help someone else.
JLH posted:kim--some questions, if you don't mind. what were your post-op symptoms that necessitated the NUVAL? was it inserted in the doctor's office? and why the valve revision? thanks so much, janet
Inserted in the Dr's office (Cleveland Clinic). See my other detailed reply in this thread. I'm happy to answer any questions.
kim--thanks for all of the helpful info. what a tough recovery you have had. so sorry.
i too have a lot of mucus, at least more than double what was produced prior to the surgery. i can saturate two nursing pads daily. my acupuncturist thinks the mucus is a by-product of the inflammation, from surgery. i would think your inflammation would be gone by now. do the nurses or docs have any ideas on the cause of increased mucus? any way to treat it?
yes, thank goodness for stoma nurses who speak up with suggestions!! more than one has provided solutions for me. they listen to more patients, see the problems in more depth and therefore have some good ideas.
wish i could offer suggestions, but at least i can send you lots of sympathy. janet
JLH posted:kim--thanks for all of the helpful info. what a tough recovery you have had. so sorry.
i too have a lot of mucus, at least more than double what was produced prior to the surgery. i can saturate two nursing pads daily. my acupuncturist thinks the mucus is a by-product of the inflammation, from surgery. i would think your inflammation would be gone by now. do the nurses or docs have any ideas on the cause of increased mucus? any way to treat it?
yes, thank goodness for stoma nurses who speak up with suggestions!! more than one has provided solutions for me. they listen to more patients, see the problems in more depth and therefore have some good ideas.
wish i could offer suggestions, but at least i can send you lots of sympathy. janet
The discharge from around the catheter is literally like a faucet that drips clear water. It is a nuisance though. I've had a catheter in constantly since Sept. 12th, so I am curious if this discharge will stop when I can finally intubate. On the plus side, I'm feeling great and living my normal busy life. Even with these setbacks, I'm so glad I had the revision surgery.
great attitude! i too have gotten back to much of my normal life, although the pain limits some activities. unfortunately the mucus continues, like a runny nose, since the removal of the 24/7 catheter. it is clear liquid and very thin. i'm almost five weeks out from surgery, and as i mentioned previously had considerable amount of discharge. what has the nurse and doctor said? j
JLH posted:great attitude! i too have gotten back to much of my normal life, although the pain limits some activities. unfortunately the mucus continues, like a runny nose, since the removal of the 24/7 catheter. it is clear liquid and very thin. i'm almost five weeks out from surgery, and as i mentioned previously had considerable amount of discharge. what has the nurse and doctor said? j
I haven't asked the stoma nurse or doctor about it yet. I was planning on calling next week. I will post an update after I speak with them.
Follow Up/Update:
Another road trip from Virginia to Cleveland completed.
NUVAL replaced and a second revision surgery has been scheduled for the beginning of May with Dr. Shawki this time. During a scope, he determined the valve and pouch look great and the inability to successfully insert the catheter is related to the path of the catheter from the stoma to the pouch. I am dreading starting the revision process all over again, but I am hopeful this second surgery will be a success.
Hi Girls,
Ok, I have been here and done this one before, many times...including the twists and turns in the path...
Generally, the mucus is normal due to the irritation that the catheter causes to the valve while in place...once it is removed, the irritant is gone and the 'runny nose' stops running...For now, just keep a "gauze collar" around the base to catch it all and a pad with a slit in the middle wrapped around the body to catch it all.
It can take a couple of months for the totality of the irritation to calm down...so your mucus output today may not be indicative of the output of next month.
If it really bugs you after a while, an antihistamine can calm it down for a while...try about a week on an OTC one and then stop to see if it worked.
Sharon
ps...antihistamines can really dry things out so you may need more lube to avoid hurting your valve.
hi Kim – – just checking in to see how you’re doing. I’m over three months out from my surgery. The mucus has finally calm down And the stoma is no longer prolapsed – – it’s amazing how those things can change ones life for the better!. In general I feel like I’m back to normal with the exception that I’m still not supposed to do Pilates. Have been sneaking in some core work however.
A comment on anti-histamines. I Had taken them for a cold and got so terribly dehydrated that I ended up in the ER for IV fluids.
Are you still scheduled for surgery in May? How are you doing and do you still have the nuval inserted? Be well, Janet
I’m doing well. I still have the NUVAL (placed on Feb. 5th) and I’m still scheduled for the 2nd revision surgery on Friday, May 4th at the Cleveland Clinic. Driving there on May 2nd and pre-op appt’s are on May 3rd. I’m staying positive and hoping this revision surgery goes smoothly, and I will be able to insert the catheter normally, like I have for the last 35 years.
I’m exercising 2-3 times a week at Orange Theory Fitness to help with my weight loss. It’s a high intensity interval group workout. I have to modify some of the strength floor exercises due to the NUVAL, but I can do most of the treadmill (power walking) and rowing machine segments.
I’m hoping I can keep this NUVAL in place until May 4th, so I don’t have to make the 6 1/2 hour drive to Cleveland before my revision surgery.
I thought a picture would tell a 1000 words. For the first time, we recommend inserting them in a GI lab setting. There after, they are designed for the patient to insert on their own.
The NUVAL has worked pretty well. At this point, I wouldn’t be able to insert it myself. Hopefully after my 2nd revision surgery, next month, I won’t have to use one anymore. It has definitely been a huge help since November.
Update--- postponed surgical visit to Cleveland Clinic scheduled for next week. Instead, I'm seeing Dr. Jean Ashburn on Wednesday, May 2nd. She was formerly at Cleveland Clinic and performed my revision surgery this past Sept., she has relocated to Wake Forest Baptist Health in Winston Salem, North Carolina.
Still have the 2nd NUVAL that was put in at my Feb. visit to Cleveland.
Sounds good. Closer is always better and the same surgeon makes a big difference. This has been such a long haul for you. You are very patient and may it all work out well. Thanks for keeping us posted, Janet
I hope that this change brings you luck and good health...
Sharon
Thank you for sharing this Kim...I've told my WOCN to advocate for this. Better option than carrying that large drainage bag full of poop.
I had an easy trip to Winston Salem, NC to see Dr. Ashburn at her new location, Wake Forest Baptist Health. The morning appt was to bring her up to speed with what has transpired since the revision surgery she performed in Cleveland this past September (she left Cleveland shortly after my surgery and a different Dr took over her patients in Cleveland). The afternoon appt was for a comprehensive scope exam. She removed the NUVAL, scoped the pouch and reinserted the NUVAL. She was very pleased with all parts of the pouch, including the valve. It seems the inability to intubate since the surgery is related to the length of the "channel" between the stoma access and the catheter passing through the valve is too long and needs to be shortened. I've really worked on losing weight after the surgery, and I'm sure this contributed to or caused this issue, but I'm happy that I've been able to keep the weight off. She obtained video and still photos during the scope, and will use these as she formulates her plan for the repair. We're going to be scheduling surgery in the next couple of weeks. I left the appointment feeling very positive. I've had a K-pouch for 35 years before these revision issues, and I was hoping to keep it. I'm relieved it looks like she will be able to get my life back to normal.
Sounds promising...great news.
Sharon
Kim S posted:I had an easy trip to Winston Salem, NC to see Dr. Ashburn at her new location, Wake Forest Baptist Health. The morning appt was to bring her up to speed with what has transpired since the revision surgery she performed in Cleveland this past September (she left Cleveland shortly after my surgery and a different Dr took over her patients in Cleveland). The afternoon appt was for a comprehensive scope exam. She removed the NUVAL, scoped the pouch and reinserted the NUVAL. She was very pleased with all parts of the pouch, including the valve. It seems the inability to intubate since the surgery is related to the length of the "channel" between the stoma access and the catheter passing through the valve is too long and needs to be shortened. I've really worked on losing weight after the surgery, and I'm sure this contributed to or caused this issue, but I'm happy that I've been able to keep the weight off. She obtained video and still photos during the scope, and will use these as she formulates her plan for the repair. We're going to be scheduling surgery in the next couple of weeks. I left the appointment feeling very positive. I've had a K-pouch for 35 years before these revision issues, and I was hoping to keep it. I'm relieved it looks like she will be able to get my life back to normal.
Arrived in Winston-Salem today. Revision surgery with Dr. Jean Ashburn is first thing Monday morning, June 18th.
Hi Kim—so great to have good news from you re-upcoming surgery and all things looking positive. It also sounds like the surgeon is extremely thorough w her prep. One never likes to have surgery, but under the circumstances it sounds encouraging. I will be sending you WhiteLight.
I am curious, if you don’t mind me asking, what your delta was of weight gain and loss. i’m wondering if my weight gain of 10 pounds, since the hernia/valve revision surgery in December, is what is makes the stoma area pudgy on one side. Or perhaps it’s another hernia. i’ve lost about half the weight. Always something isn’t it?
Keep thinking your positive thoughts as it has sited to you in a good place. j
First off, Congratulations Kim (if one can congratulate anyone for a surgery!)...I hope that the problem gets fixed and that your beautiful baby pouch gets back to normal again!
Janet, I do not believe that 10lbs will do it. I was a highly undernourished kitten when they gave me my k pouch (under 100lbs at the time) and am 50% heavier today ( I made up for lost time...love food!) The area around my stoma is flat, although I have some lovely love handles and whatnots that were not there back then they do not compromise my stoma or pouch...
Get that checked out please...you know that once we start getting hernias it never seems to end...something about the tissues getting weaker as we age, especially in us girls...do not allow it to develop further without a diagnosis.
Sharon
When I initially had k-pouch surgery 35 years ago, I was so sick that I barely weighed 100 lbs. Nine years later I sailed through a pregnancy with no complications. Post hysterectomy and through menopause, the pounds came on little by little every year. I was up to 185lbs. One will never know, but I feel like the valve just gave out after 35 years (I had never had any surgery on the valve since the original procedure) rather than the gradual weight gain causing the intermittent valve failures. I’ve never had a hernia. Nevertheless, I have lost 40 pounds since the revision surgery in September. If I can stay within plus or minus 10 pounds, I will be happy with that. I still have the NuVal inserted to facilitate emptying the pouch (since February 5th). I’m optimistic about tomorrow’s surgery. I’ll let everyone know how it goes.
kim
when you are able please post as to how the surgery went and how you are feeling. how long do they anticipate the hospital stay? hope you are well and sending healing thoughts. janet
Greetings!
My 2nd revision surgery was Monday, June 18th at Wake Forest Baptist Hospital in Winston-Salem, NC. I was discharged the afternoon of Friday, June 22nd. Since it's a 5 1/2 drive, we stayed in the hotel Friday night and came home Saturday. Dr, Ashburn performed two repairs, 1) she shortened the "channel" between the stoma and the nipple valve and 2) improved the orientation of the pouch on the abdominal wall to the optimal position for intubation. There is tubing in the pouch and it is sutured to a few anchor points around the stoma (a little painful) to hold it in place. The tubing is draining into an ostomy appliance until my post-op appointment on Tuesday, July 3rd. In my 35 yrs with a K pouch, this is my first time using an ostomy appliance, it is a little challenging. Same mid-line incision as the September surgery, but sutures this time instead of staples, and a Silver Lon dressing in place for 7 days from leaving the hospital.
The doc was very happy with how everything went. Hopefully I'll be back to my normal K pouch life soon.
Thanks for all the well wishes.
Sounds very promising...stay calm, take short walks, overdo nothing, underdo everything...in other words, heal!
Take your time, no pushing, pulling, lifting, carrying, squatting down or bending forward with heavy objects...it has been 35yrs since your last pouch and your body has changed so take it slowly and let your body do its things.
Congratulations!!!
Sharon
I had my 2 week post op appt yesterday with Dr. Ashburn at Wake Forest Baptist Medical Center in Winston-Salem, NC. I am happy to report that she removed the catheter that was held in place with the sutures and I was able to intubate on my own. I'm still a little sore from the surgery , kind of a bruising feeling, but I have been able to intubate for the last 24hrs on my own with no significant issues, so we are headed back home to Virginia tomorrow. I definitely recommend Dr. Jean Ashburn for anyone who needs revision surgery. She is extremely skilled in dealing with K pouches.
Kim--fantastic news and congrats. the bruising feeling lasted with me for many weeks and indeed it is bruised. would be good to know if there is anything one can do to relieve the problem. hope you are able to rest and stay cool to continue the healing. best wishes, janet
Well, things were going great after the 2nd revision (June 18th), but I am back to experiencing leakage. At first it was very small amounts, but it has been increasing in amount and frequency. The only good thing is that it never leaks while I sleep. I have an appointment for an ileoscopy on October 24th. This has been a very trying 12 months. After almost 37 years with a K pouch, 35 of those years with very few issues, I'm so frustrated. I may put the NuVal back in.
Kim
Have you read the post about anti depressors? Not sure if this is your case but I found it interesting that for some people it may explain unexplained leakage. ... just in case, check it out on this forum.
I hope that it is nothing serious.
Sharon
