Hi,

Need some advice, info on the Nuval valve. I’m getting one on Friday to see if it can help alleviate my severe gas issues. I’ve had the K for 2 yrs now and just can’t get any rest as this needs emptied 12/14 times a day.

Hopefully someone out there has experience with this.I’m in the CLE area.

Thanks , Jan

 

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281A0030-1D08-40C4-B38F-290DA094B4E3C054A3F8-18A3-4C4A-8416-C54C82BAC935I’m actually using one right now, due to intubation difficulties. This is the third time I have used a NuVal over the last two years, for months at a time.  This one was put in on April 18th at Cleveland Clinic. I’m not sure how it will helpful with gas issues though. I have a pdf of the booklet that comes with it, if you want me to email it to you. I’ll try to attach a photo. I can answer any questions you have. 

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Kim, 

Yes, please, I would appreciate that! I have a lot of food allergies, motility problems, etc. The gas swells me so much intubation is quite difficult, usually lying down.

The thought is this can make it easier and I can hook up to a bag at night and get some sleep. So sleep deprived.

I will read what you send and maybe I can talk to you?

Thanks , Jan

 

Will try to receive it, thank you!!

Questions.. Can  you get in a tub, pool?

Is it very uncomfortable?  Does it feel like an ostomy?  Does it get smelly?

I’m sure I will have more questions, but it really is worth the try( I hope 🤞)

Appreciate the help soooo much

Jan

Yes, you can get in a tub, pool, etc. 

It really isn’t uncomfortable. I got used to it after a few days. 

I use 4x4 drainage sponges around the NuVal catheter to absorb the usual drainage. As long as you change them as necessary, nothing smells. 

My current valve and hernia issues are causing incontinence, even with the NuVal in place, so I  have to wear an ostomy bag over top the inserted NuVal. I can’t wait for my revision surgery, coming up on August 26th. 

Let me know if you have anymore questions. I emailed you the NuVal patient booklet. 

Kim, do you have a peristomal hernia? If so, the NuVal is not a good idea...at all...it makes things worse, not better. Let me explain. A peristomal hernia is a hernia that is in the muscle holding your stoma/valve in place...it is a defect, rip or tear in that muscle and thus the muscle is weakened which is why your stoma/valve are not being held tightly...which in turn, causes the whole thing to move around, leak both stool and gas depending on your position (standing/sitting/laying down) and generally make it difficult to intubate because the whole things is not tight.

The NuVal has a balloon at its base that gets inflated with water in order for the whole thing to be held tightly in place. If you have a peristomal hernia then nothing is tight in there and with enough pressure built up behind it, it can be expulsed. Along with your whole stoma/valve.

It happened to me the night after they placed the NuVal...I had a lot of gas built up and it was putting a lot of pressure on the whole apparatus...next thing I know it is all hanging out into my hands and the valve is gushing.

That is when I scheduled emergency surgery and had Dr C fix the valve.

It was terrifying...but I was smart enough to take pictures at the time and send then to him first. He is the one who explained it all to me.

If on the other hand, your hernia is Not in the muscle that holds the valve in place you should be fine.

Sharon

 

 

 

 

Yes, the recent (July 21st) CT scan shows a parastomal hernia. This time I’ve had the NuVal in since April 18th. I’m wearing ostomy bags over top of the NuVal for the leaking. I am scheduled for my third revision attempt on August 26th. This time it is with Dr. Kiran in New York City. I’m counting the minutes. Hopefully my two year quest to have my K pouch be continent again will come to fruition. I just have to make it 11 1/2 days to admission. 

Good luck Kim.

Please lookup EDS and read about it, it will not take you very long...go to the Mayo clinic site or anywhere on the internet.

20 yrs ago there was nothing on it or barely anything when they thought that it was a 1 in 20, 000 000 chance of having it, now they have lowered that to 1 in 2500...it is much more common and considered one of the most underdiagnosed diseases in the world.

There is no cure, the treatment is just a list of Do Not Do's and strength and reinforcement exercises, massages for the pain and anti-inflammatories when needed. But, the important part for someone who has their surgeries keep falling apart without any answers to Why is real...if you have it then they can take the necessary precautions to make things hold on and hold up better.

I was at the QLA conference last year as a keynote speaker. It is for those who have or want to have a BCIR...quite an impressive event and feeling to find yourself in a room with 300 other people with continent pouches. So, I asked people questions about their history and background and found 6 with Ehler's-Danlos...6 who had had non-stop repeat surgeries for valve failures, fallen pouches and hernias...so many similarities, so many surgeries that I believe that there might be a link that we do not know about.

People suffering needlessly when precautions can help...

I used to say that any surgery that I have had leads to 6 more, no matter how small or unimportant. They all fell apart. From mole removal to full-blown k pouch surgery.

I have had over 12 pouch revisions in all and it only stopped because they finally listened to me.

They diagnose it by symptoms...read the list and check them off, if you do not have it then fine, but if you do, mention it and maybe it will help.

Sharon

 

 

Hi Kim

Thought I’d check in on on you to see how things went in New York. Hopefully you are doing great? It a few weeks past now.

Dr Shen will be joining Dr Kiran there, finishing here at CCF in November.

So hope you are on your way to a quick recovery,

Janice

My revision surgery was on 8/26. My post op appointment is tomorrow afternoon. I’m looking forward to getting all these staples out, and the catheter removed and seeing if everything works or not. I’m optimistic, but not getting my hopes up too much, since Ive been in this position twice before and was disappointed. 

Dr Shen is very experienced in all pouches .He has been at CCF for 18 yrs. Worked with Dr Fazio , Dr Remzi and Dr Dietz. Dr Dietz is at the University Hospital next door now so we at least have a surgeon still and thank God.

He told me when I got C diff in my pouch I was only the Third of 400 K patients he had with it! So that is a lot of K pouches.

Feel very secure with him. I am sooo sad he is leaving, guess he will serve a larger area and be with a direct surgeon again.

How are you feeling?

 

Appt went well. Staples removed, catheter removed. They filled the pouch with some water and had me move around. No huge leaks. I have to put the catheter in every 3 hours (only once during the night as long as I don’t eat late) for 3 weeks. Then I can go longer between intubations. Everything is still a little tender. The stoma still needs some time to heal. It’s a little sore. Doc wants me to call him in 3 weeks. I’m cautiously optimistic. Hard for me to get my hopes up yet.

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