I am always in pain. Are you in Gi pain or abdominal pain. Sort of different.

I am so sorry Jeannie,
This shouldn't be happening, it is so unfair...thank goodness you have good doctors that you can trust and who take good care of you...I hope for your sake that this is something simple and that they can fix it quickly.
I don't usually have abdominal or pouch pain...not unless something is going on in there...if I have a blockage or occlusion...the only other presistent pain was either from my galbladder, hernias or way back when when I still had a period (which could send me through the roof especially when I had ovarian cysts)...
I don't get valve pain either unless I have done something nasty to it like eat lots of salad and have to constantly pull out the tube to clear it. Then I do get a stabbing pain. My bad, not the pouch's.
Do you not have anyone (a radiologis) closer to home who could do the exams over there and then send them out to Dr Launer's office? I have finally found 2 here who can do the contrast studies for me and then they send the digital files over to Dr C in Toronto...it saves me a lot of time, stress and money that way....just a thought.
Hope you get some good news soon,
Please keep us posted
Sharon

I WISH I had no valve pain. Mine feels like a razor is slicing me all the time.

That is the part that I don't understand Vanessa,
Why you are suffering so much and why they have not been able to help you????? What is the cause of the valve pain? It should not hurt any more than your throat hurts when you eat...yes, if you do something silly (like I do) then you will get irritations but not on a permanent and regular basis...What are they proposing as a solution?
I am sure that there are all sorts of problems that I know nothing about (nerve problems etc) but gosh...this is just wrong!
Hang in there girls...I know how it feels...and there should be hope.
Sharon

Marlen Catheters...Has anyone ever used these? They have a bit of a tapered tip -- and some find they may go in a bit easier. If you have used them, did you notice difference than the standard Medena cath which has a blunt tip?

I still have a few...I've got just about everything that exisits on the market...I found the marlene to be too narrow for my taste (those are the ones with the bullit tip aren't they? only 2 holes)...they were what we call 'silastic tubes' I think but unless your output is really liquidy it takes too long to empty. I have found that when you have a twist or kink in the valve you need a whole array of them...I keep a medena strait and a curved with me at all times, a urinary disposable one (tiny little thing, stiff, strait and comes in a prelubed packet), they work really well if you can't get the tube in and a metal do-hickey that they gave me in radiology in case of extreme emergencies...you never know.
Ps...how are you doing?
Sharon

I am talking about using the Marlen just to get into pouch. Then I would use the Medena as always.

What is a metal do-hickey?

They use them to do biopsies during endoscopies...they are like flexible metal spiral tubing with a teeny-tiny guilliotine at the end...about 3mm thick...at least a yard long...they are really flexible but very strong so you can push them through curves and twists...I kept mine when they wanted to throw it out and they gave me a 2nd one just in case. I no longer travel without it in my carry on (customs loves me...my luggage looks like it belongs to Dr Strangelove)...
I found that once you have a kink you need to discover its direction to find your way around it...mine is up and over a hump...got one tonight. So I panic first then aim upward and use a stiffer tube to push through it. It reminds me of a hook-shot.
Maybe someone could figure out a way of taking a mold of your stoma so you can find your direction?
Sharon

I have been scoped so many times, last time I was awake so I saw the valve and pouch. Nothing looks wrong! My doctors say a few things.

1. cdiff damage to the area
2. the bowel that is used to wrap around the BCIr valve is causing twists and spasms
3. nerves

it all sucks. I am having kidney issues now due to stupid doctors not booking my iron infusion. So I am too stressed dealing with back and chest pain to think about the valve.

I am so over the issues from this disease lately. Need a break.

Jeannie,

How are you doing after your procedure? This must be very frustrating for you having to travel so far. Hopefully you have some good news to report.

Donna

So sorry for not getting back. I had a death in the family and have not been feeling to swift. I could not get a flight to San Diego the next day all were booked.

So I waited to see if pain returned and guess what --- it didn't Until last night when I had pain then the gas noise and relief. I lasted again about 20 minutes then pouch emptied. I obviously have an obstruction in the bowel somewhere. I have not taken care of it yet. Forgot where to buy my catheters??? I only use Medina 30 fr. I thought they were only 12.99. Who does mail order in US
Sorry again, Thanks Jeanne

I use Edgepark and insurance pays for caths.

I finally made it down to La Jolla, CA to Advanced Surgical Associates - Dr. Launers office and now since his death Dr. Jonathan Worsey Colo Rectal Surgeon. Dr Launer and Dr Worsey made my failed Jpouch to a Kock pouch in 2006.
Dr Worsey scoped me and saw a stricture again at the anastomosis of bowel and pouch. He made me have a CT Scan at Scripps Encinitas, CA the next day to confirm the cause of the pain. 300 mls of contrast was put into my pouch then CT machine took a picture.

Finally heard today from his Rn Yes you have the same narrowing again that I had 4.5 years ago. Looks like Dr Goldklang will be called in to do balloon dilation after the holidays.

I am looking for a collection bag for stool that they sent me home from the hospital with in 2006. At that time you had to wear the tube for several weeks. DOES ANYONE KNOW HOW TO ORDER SUCH A COLLECTION SYSTEM. I have to wear my tube until I am fixed in January. Using a glove with tape is insufficient as it smells. I also tried a regular ostomy bag but doesn't work. Jeanne jandjscott@sbcglobal.net

I have leg bags! I get mine from Edgepark.

Amazon has them too http://www.amazon.com/Comfort-...1-4&keywords=leg+bag

I prefer that one since poop drains out easily. I had another one that was a top off cover and the poop got clogged so it became a one time use bag.

You can order an extension tube if you want as well but I had it up high enough to the catheter.

Also, I have tons of plugs that go in the end of the catheter if you want a few I can mail you them. That way you won't need the bag and it doesn't leak when crammed in there good. Look like this http://www.allegromedical.com/..._a_7c4637_a_7c188657

Jeannie,
I use urinary leg bags...not sure that there is a difference betweent them and the ones that they give me in the hospital...same difference...I connect and tape the connection (since it poped open and splattered my girlfriends brand new convertible!)...In a pinch you can use the tip cover that comes on the end of your 60cc syringes as a plug...works perfectly and is the right size...just tape it in!...hope that this is over soon and that you can go back to your usual, normal life.
Sharon

Thank you Vanessa
I just got a package of tubes from Edgepark I will look on the site. I have to drain my stools so it does not pile up at the stricture and hurt like hell when it trys to get thru. I am now putting my legs up on the bathtub with my belly in the air to relieve the pain so it is bearable. Takes about 20 minutes each time. Yesterday I had 2 occurrences. Inserting tube and plugging it will not help.
Oh the stuff we put up
Talk soon Jeanne

Thanks Sharon
I think the urinary leg bag is the same one. Seems like when I worked med/surg as a nurse I remembered the one I came home from Scripps hospital with was the same urinary bag used in every hospital. I will look in Edgepark medical supply's.
I just read an article on ballon dilation for stricture (usually in Crohns disease)Only 1 of 20 dilations did not need repeating. Some within a year. I guess 4.5 years was lucky. What will I do when I am an old lady and can not walk thru these airports?
Your friend Jeanne