UOAA Discussion Board

I have a few questions about the Indiana Pouch. My mom just had the surgery on 07/24/07 and at her visit today (08/08/07) the doctor gave her the ok to start to catherize herself. However, when she attempted to do such each time today, nothing of signficance came out; rather she found herself to leak from her foley which was "capped". It won't be taken out until she is comfortable with catherizing herself. She leaked a lot and several times throught the day. Does anyone know why it would be leaking from the foley? She had a pouchogram today and everything is fine from the surgery standpoint.

Could it be that her position is not right? She is doing such standing up in front of a mirror? We hooked up the foley bag tonight so that she could try to sleep until we get a hold of the ostomy nurse.

Also--has anyone else experienced anxiety with this procedure? She is dealing with a lot of other stuff but the anxiety, I think, but be making it more difficult to relax and catherize.

I would appreicate any other advice anyone has. I am trying to be there the best I can and I did find a lot of interesting information from your stories.

Thank you.

Why was this post moved from the main forum? I think it may have received a reply or two there.

I don't know much about an Indiana Pouch. Here's a link that might help.

I don't know about the foley, but I do know that when you insert the cath, even if it is in all the way, sometimes nothing comes out until it gets to just the right spot where the urine is. Once the cath is in, try rotating (twisting) it while slowing pulling in and out a few inches until urine starts to flow.

Also I find it more difficult to empty a half-way full pouch rather than a full pouch because I don't immediately hit the pocket where the urine is sitting. If she can't get urine out tell her to relax and take a break -- come back in 30 minutes and try again when there is more urine.

You might also try starting the flow by squirting a little irrigation solution in. If the catheter's eyelets are blocked with mucus this would clean them so the urine can flow. Fill a 60 cc cath tip syringe and squirt in 5-10 cc and then try to suck urine out. If nothing then try wiggling the cath around, squirt in 10 cc and try pulling urine again. Eventually you'll start to suck urine and then you can let the cathether empty by gravity.

If the cathether isn't inside the pouch, when you squirt the water in, it will give you a suddent feeling a being very full near the surface of your skin. It is VERY uncomfortable, and water will leak out the stoma, but this will tell you that you're not in the pouch.

You might also try changing your catheters. I use a soft latex catheter because it is more comfortable (and cheap) but I find that stiffer catheters sometimes work better, but are very uncomfortable -- if anxiety is a big problem, I'd probably avoid the stiff catheter. You might try a silicone cathether, these are firmer, but soft and not too uncomfortable -- unfortunatly they are slightly more expensive.

Anxiety. Yes! Especially when you're starting out. It feels odd to push a plastic tube through your stomach wall. We're programmed to avoid this sensation since it generally means that something very bad is happening. After the first few times this goes away.

When I started, I was worried that I was being too rough and I'd damage myself, but after a while you learn that doing real damage with a soft latex catheter is very difficult.

Even after you've become experienced there is sometimes anxiety. I mean, if you can't get urine out and you know you need to pee it is frightening. I have some long (but dreary) stories about trying to pee and finding it difficult.

Tell you mother to hang in there! After the initial adjustment things get better. Honest.

First of all she needs to try sitting on the toilet to cath or she can try semi-lying down in bed. It maybe that the position is wrong and she is not getting it in all the way. I personally need to use a stiffer catheter and it should not hurt, especially if you use plenty of lubricant on the catheter. If she gets nothing out it may be that there is not much in the pouch. How long has the Foley been capped off before she caths? Where does she get her supplies from? They may be able to send her samples of different catheters to try. What size catheter is she using? It could be that she needs either a smaller size or a larger one. As for anxiety, YES it is nerve wracking in the beginning and being that she is not having much success makes it all the more anxiety producing. Did they teach her how to do it at the doctor's office or in the hospital? I think she REALLY NEEDS to have someone with her like an ET (ostomy nurse) or someone experienced to watch her technique and to give her pointers to help boost her confidence. Judith

Hi Andrea, I also had great support from my daughter. I had surgery 3/2/07 and yes anxiety is definitely a part of this new normal.

I lie down on the bed if I am having touble inserting the cath and I find it goes in a lot easier. Are you using lubricant (KY Jelly)?

My doctor also said I could leave the cath in and cap it off like the foley cath.

She may also need a bigger cath I use a size 16. Any help I can give I will be glad to help.

Sincerely,
Ellen

Andrea,
Wow, still so new. I did not start cathing until 4 weeks or so? It certainly didn't seem so soon. At any rate..
I spent my first few times standing and using the sink vs. the commode until I got used to what I was doing. For me, standing is much easier and it helped to be able to watch in the mirror. It is not always easy to see the stoma especially right after surgery with the pain.
I agree with the suggestions my CUD friends have made, just wanted to reinforce. I use the red rebber 18FR caths from robinson-nelson, they are not too stiff nor too flexible. It would seem to me she would have better success with the stiffer ones as they are much easier to manuever. It will take some time for her to get used to her pouch, they all have their own unique twists and turns. For me, I feel a strange "pop" (not painful) when I get to the part of my pouch that holds my urine. As she gets used to it, she will be able to feel how full she is or isn't and when to cath, right now she is still training it so I understand trying every 2 hours or so. Again, as suggested earlier, use plenty of lube (surgilube or KY) so you can pull out and push in much easier, twisting it every once in a while. I believe she does not have enough urine there to get the flow she expects. Is she flushing with saline? This is also a very good thing to do when first starting out to help you get the feel for what a full bladder feels like. If you are not familiar with this please get ahold of the doctor or ostomy nurse. I always have to fill twice with a syringe before I can pull back. Push the water, there is nothing better than pushing the water! I know that is standard for all of us, but it seems to really hold true with ostomates. It is amazing the difference it makes.
The anxiety will get better. It is a "new normal" as my doc and others have so eloquently pointed out. Before surgery you are so focused on the pain and the irritation of frequent voiding you just want it over. After the surgery you have pain and a whole new unkown world to experience. It is frightening and shocking. I would not even look at my stoma or cath for the first few days, I asked my hubby (blessed to have him) to do it for me. Once she realizes it does not "hurt" to cath and has some success she will be on the road to recovery. If she feels well enough and you can get her to, please have her log in and chat with us. Even if she doesn't post, it is so helpful to read what others have to say. Knowing there are other people who share the same fears, anxiety, questions pain etc makes it so much easier. What type of caths is she using? Please feel free to email me, send a private message etc I will be glad to do what I can to help. I have not been so good with checking in the past month or so but plan to log in every other day at least. A wonderful support system is truly the best way to full recovery. I am sure she is so thankful and considers herself blessed to have you in her corner. Most importantly, be sure to take care of yourself, she does not need to be worried about you as she gets better. God bless you!

Andrea,
I ttotally agree with everyone. It is normal to be anxious at first and even frustrated with your new pouch. I have only had mine since Feb. But I had no idea what to expect other than what the doc showed me and what a few friends told me online. The first week by myself seemed like a total disaster! It will take your mom some time to re-learn her body again, but like someone suggested I would have her talk to an Ostomy Nurse. She will have to be patient and if she has any cincerns I would discuss them with her Doc. right away. Good Luck!
Blessings& Hugs,
Eva

I just wanted to say thank you to all that replied to my question. It has been long road and my mom is getting better. She is going on 8 wks post the pouch and is getting ready to go back to work next week. The anxiety has gotten much better and she is in a better frame of mind. The leaking has gotten under control b/c she is monitoring her input and that has allowed her to control how much is going in. Again, I do appreciate everyone's support, answers and prayers. I will continue to use this site so that I can continue to understand what she is going through and how I can help her.

Thank you,
Andrea

Thanks for the update. Glad to hear things are getting better for her Judith