Hi guys!

I had revision surgery to my pouch on November 16th. So far is has been ok, but there have been several occasions where I have trouble intubating. The first time was on New Years Eve and I couldn't get the tube in all day, and it was leaking, so I put an ostomy bag on it, and when I finally got the tube in, I left it in for 10 days.

It seems my valve is moving around. If my pouch is full I can see it actually moving under my skin. If I put my pinky finger inside, I can feel it tightening and moving everywhere. When it moves I can't get the tube in, and gas leaks out. I also get a really sharp pain before this happens, even if I don't feel like the pouch needs emptying. It seems to happen mostly when the pouch is full, and that only really happens when I fall asleep after eating. It's usually for several tries I can't intubate, but I'm trying not to cause swelling and inflamation. I want to know if this is normal. I am taking precautions of emptying every few hours and as needed if I feel it getting crampy. I'm not eating anything bulky or things that are hard to drain. I'm avoiding gassy foods too. I have supplies to set up a constant drain if I need to.

Anyway, I emailed my surgeon Dr. Cohen, and was told that he would need to re-operate to fix this problem. This is why I want to know if it's normal that the valve moves... is it moving because it's not yet healed into place? It's been a little over two months now. He said I would need to wait for two months to do the next surgery, but I really, really don't feel like going through this again. I will probably just deal with it and see if it gets any worse.

As well, I am going to go to California for March 3 to 6 or maybe the 7th. There's a concert for a metal band called Norma Jean in Pamona on the 3rd, then The Whosoevers Conference on the 4th and 5th in Diamond Bar. Aside from that I plan to meet up with Janice and whoever else is around. If anyone else can make it into that area let us know!

Hi Tiffy,
I am so sorry that this is happening....we apparently have exactly the same problem...My valve has been 'mobile' for quite a while, Dr C was shocked when he felt it and said that it was the first time that he has seen this type of problem...It changes directions or trajectories...I never know which direction to put the tube in, it feels like it isn't achored down...then there is the problem that when the pouch is full I can't get the tube in...it feels like it is pushed flat against the wall from the pressure so I have been doing what you do: no carbs (too thick, too much bulk), no fibers out of fear that they will have to us an NG tube and it will clog, intubate often so that there is no accumulation of stuff, I empty my bladder completely before intubating to reduce the pressure behind the pouch...and of course that Pain...
I only had it a few times...it felt like my valve was trying to push itself out of the pouch (it did! the pain lasted 5 days then I flew to see Dr C.)...now I get a pressure feeling like it is still pushing but no real pain, but now the stoma looks like it is sticking its tounge out at me...I stay liquidy, eat small low residue meals and hope to survive until this summer before the redo...but I haven't leaked since Sept...so that is a good point.
Yes, we need a full redo...no question about it...it can degenerate....but if you are always able to get the tube in then stick to what you are doing and make sure that you travel well equipped with everything that you need handy and your medical file on a usb key...
I am really, really careful whenever I leave town...so have fun, enjoy and let me know how it is going...
I am so sorry for you and the fact that it didn't take...we may just end up sharing a room the way things are going...
Hugs
Sharon

OMG Tiffany - I am so sorry to hear of your latest problems. I was so very hopeful for you when I met you in Toronto in November that everything would be okay, but that doesn't seem to be the case. I hope you have a great time in California and that you are able to manage in spite of this.

- Dixie

P.S. I'm scheduled for surgery February 15th and will be recovering in Toronto then. I'm trying not to worry too much and maintain a positive attitude that my surgery will be successful, but hearing your story now reminds me of the fact that this is an extremely complicated surgery in spite of the fact that we both have one of the best surgeons around - Dr. Cohen. - Dixie

Sounds like we will need a room with 3 beds!
How are you doing Dixie?
hang in there and keep me posted on what is going on...
Hugs from here
Sharon

Hello Tiffany I was wondering how you were, could not get to T.O. last time you were there.All has failed for me and Dr.C will operate in feburary and I will go back to an illeostomy. Looking forward to going back,should be last and final surgery.Hope all will stay well for you.Take care have fun in california When I heal I am off too Disney World.

If you leave the catheter in for at least 21 days, I would try 1 month to see if it scars into place and stays attached. My pouch is 32 years old, but this is what I was told to do. Things may be different now, but it did work for me. I have had no further surgery on my kock pouch or valve. I left it in 24/7 for 1 month. I tied it in place with gauze around my body and tied it to the catheter, then bent the catheter so it would fit under the gauze around my body. I don't know if this would work, but it may be worth a try. Then I untie it to empty it, with the catheter left in, wash it out with a syringe and re-tie it back in place. Leaving it in at all times. I use a golf tee in the open end, to keep the contents in the pouch and tube. A wooden dowel the right size would also work. To keep you continent while it heals into place. Mine doesn't leak around the catheter when I have it tied in 24/7.

Weight changes will also affect the valve, and keeping it emptied on the schedule given to you at first is very important. You don't want too much pressure on the valve at first, so that it scars into place.

It is possible that the surgery is done differently now, so this may not work.

If my intestines ever become inflamed, like with a virus or flu, I put my catheter in and leave it until my swelling goes down in my pouch.

Hi Jasmine,
From what I know the surgery hasn't changed that much over the years...there is the question of sutures verses staples for the valve...I have had both and perfer the sutures for some reason but other than that even the post op hasn't changed much...we keep our pouch on strait drain for 2-3 weeks and then start clamping 1/4 hrs, 2/4, 3/4 etc until we take the tube out, usually a month or more...but there are some factors that effect healing like age and the condition of you guts beforehand...
Let's hope that we all heal this time round...it is getting really tedious.
Sharon

Hi Sharon,

I'm doing okay - trying to phsyc (sp?) myself up for the big day and hoping this surgery goes a lot better & is not as painful as the last one. I guess we are all in the same boat!

Regards, Dixie

I'll lend you my paddle if you lend me yours!
thank goodness for our J pouch site...nice to know that we are not alone..I'll keep praying for you and a swift and successful surgery with NO complications!
Hang in there Girl, I am rooting for you
Sharon
ps...say hi to Dr C from me and tell him that I will be seeing him soon.
hugs

Tiffany....are you interested in getting a consult with Dr Worsey at Scripps in San Diego while you're in CA? I could take you.

He could do a pouch scope in the office and possibly help Dr Cohen with some information on correcting it.

They probably have a cash pay discount and would allow you to make small payments as you do not have coverage in the states.

Something to think about! Les from WA will be down too and we'd be happy to go with you!

Hi Tiffany,

Just wondering how you are doing now? Did you manage okay on your trip?

- Dixie

Has anyone heard from / about Tiff recently? Last I spoke with her (month or so ago) she explained that her valve at that time was problematic, and she was considering what steps to take. Tiffany, hope all is well...post when you have a chance...

I speak with her regularly..I'll tell her to check your post..

Sorry!! I posted this and never replied... I did read it all back then.

Anyway, I am still having the same problems with my pouch. It's always kinking up, leaking, killer cramps, etc. I am leaving a constant drain in at night, since I'm feeling too ill to wake up to use the bathroom. The pouch doesn't hold a lot, and when it gets full it kinks. It's annoying because I feel fine one minute, the next I get a cramp and run to the bathroom and it's kinked.

I am not really sure what I want to do surgically to fix this. My surgeon said if I leave that tube in for too long it will just become incontinent. I will deal with it for as long as possible. I am on a big project and work and don't really want to take any more time off this year.

I think my biggest issue right now is that I am feeling really sick, I'm always tired, sore, dizzy, etc. A blood test last week revealed I have low calcium, vit D, iron, etc. It is a big hump to overcome. I am going to see a hematologist about treatment options. Janice has given me some very good info about getting things back up to par and then maintaining it. I am not surprised because I seem to have a very fast transit time, malabsorption as usual!

By the way, it was soooo rad to meet Janice and Rachel in California. It was so nice there. It was crazy to see so many Birds of Paradise plants in bloom in March!! I will have to go back when I am feeling up to it.