My problem came at 36 years. A stricture right before the valve. I believe from having trouble getting in my catheter which most likely caused the stricture and lengthening from the pushing and irritation. I probably should have gone in for a check up, then maybe I could have had a dilation right away, instead of all the problems with this stricture. I have taken my time with it......I've had one dilation only.

I had trouble getting my hospital and Mayo to make arrangements to get me there and admit me in on the Mayo end. They said they didn't deal with them. So someone got in trouble at the St. Mary's Hospital in Rochester, MN; for telling me that. I was very persistent, that I go to Mayo or CC. So that won't be happening anymore.

Lois,
How are you doing? How is your pouch?
How do they fix it? Do they do baloon dialations of is there another method for k pouch valves?
Sharon
ps...happy New Year

Sharon, I believe they do balloon dilations. I didn't see the device they used. I did watch it on the screen in the operating room/procedure room. At the Mayo, they have specific operating rooms for specific procedures.

I'm trying to make sure I have the catheter in beyond the end of the valve. I need to see if I can go at least 3 weeks without a big bleed while I empty it. Sometimes I do irritate it, and it bleeds a lot, then my back hurts for awhile. Then I'm ok again. Like Jan Dollar mentioned before on one of my posts, I may have a capillary close to the surface. I may have to have it cauterized then, I am thinking. They are doing research on me, which is my idea. I am doing it this way myself. Whatever happens is on me, not Mayo. Dr. Dozois is wonderful, I haven't told him about the bleeding at times which he wouldn't want to be happening. I guess you could say I'm experimenting on myself. They are learning from me and my experience. So don't think this is the norm. This is my decision, to do it this way. Then I tell them, my experience and what I'm doing and what I think. So far so good, I have to try to be more gentle so hopefully I can get it so it doesn't bleed so much at times when I empty it. So far it always stops on it's own. No fevers, I'm watching.

36 years of an ostomy without trouble, is good. I hope they can learn from how I do things and what I do and have done to get to this point.

I have to count on other people to get me to Mayo, that is a problem. I couldn't get anyone to drive me when things went wrong in March 2014. So this is not the norm, all the way around. My car isn't dependable....so really none of this should have gotten to this point in the beginning. I wanted to go 3 days before I got to the Mayo when I couldn't get my catheter in.

You are very couragous my dear,
I know exactly how lonely it can feel when you are conducting the experiments on yourself and have no one to turn to for advice or help.
You are Lucky to have doctors willing to listen to you and allow you a say in your treatment and Healing.
I really think that we need to compile a list of possible things that can go wrong with our pouches and the solutions that we have come up with so that other do not feel so lonely & terrified when faced with the unexpected.
Keep up the good work...you are doing such a good job advocating for us.
Sharon

Thanks Sharon......you too!

I'm thrilled to find this site. I can actually say I no longer feel like the Lone Ranger! Now I have a source to go to for understanding and information. 

I've had my k-pouch for 37 years due to long battles with UC. I originally had an ostomy with external appliance... I became so allergic to the adhesive, causing skin problems so severe that I eventually ended  up with an internal pouch. the surgery saved my life. I went from life threatening to dealing with issues for 37 years. Truly I'm not  complaining , I realize that anyone with this alteration to the digestive system will have problems from time to time. However lately the issues have  become  more problematic and it wasn't more than a few days ago that I told my husband that I thought my pouch had shifted.... Not even knowing that could happen. I use to be able to insert my medina catheter straight in.... Now it's more on an angle. So I surmised that having to insert that way impeaded  the flow, sometimes stopping it all togethe. I'm having to pee more often, my back hurts, I have a lot of noisy gas and discomfort. My husband and I r now discussing seeking a consultation for possible repair. I'm glad to find out that some problems can be dealt with thru a laparoscopic procedure..... Gives me hope that I won't need full blown surgery. Thank you

Kray,

You will probably need to have a contrast study done where they inject an Opac liquid into the pouch and then take pictures.

When they do mine my radiologist just dribbles a couple of drops into the valve first to get a good picture (I have a divit in it that catches my tube sometimes) and then fills the pouch.

He take pictures with me flat on my back, on both sides, sitting and standing up.

That is the best way to see if the pouch has fallen, dropped or twisted or if the valve has twisted or changed position.

He then takes pictures as he empties it out. 

It gives my surgeon a really good idea of what is going on in there without having to cut.

Most of them time he has been able to do the fix laporoscopically...good for me and my pouch.

Even hernias, dropped pouch or twisted pouch can be fixed that way.

You need to start with the exam and move forward from there.

Sharon

 

 

Thanks for your reply Sharon......we've all here had procedures that stripped our...well... dignity. R u saying the surgeon actually needs to empty the pouch in the office? I'm cringing at that thought. We all must do what we need to do.... I might need some general anesthesia ������❗️

It is not embarassing (at least after a couple of dozen of them) and I no longer notice because I am so busy watching the screen to see what is going on in there!

I wear very low undddies that he sort of covers with an absorbable cloth (you need to tuck it under too) as well as a T shirt that I pull up to show my abs and stoma. (no more exposed than if I had worn a bikini.

You need to guide the radiologist. You need to tell him where you feel it was and is now and the direction that the valve has now taken...most radiologists have no idea of what your anatomy is like in there (I had a very kind radiologist friend who did just about anything I needed without asking any questions...I was his little science experiment so to speak...his learning curve. We discovered a migrating kidney, a folded over uterus and lots of other surprises...all probably caused by the surgeries when things get shoved around in there).

I am the curious sort so I love watching and hearing the explinations. There is no pain. They use a basin to help you to empty out (although I have 'exploded out' a few times so use an inexpensive t shirt!)

Don't worry...when it comes to health and science, anything that can move you forward to a diagnosis is good.

Let me know how it goes, please

Sharon