Pain in pouch after cathing?

[bellaluna05]

I asked before, but I want to be clear. Did anyone here ever have constant pain in their pouch and/or stomach/pouch area?

Lara is doing everything just like she's supposed to -- on time cathing, irrigating to get out mucus etc... But she is really troubled by the fact that she gets almost no relief after cathing. She still feels a ton of abdominal pain after the cath.

Plus, she still feels the "urge" to pee in the area where her urethra was.

Did anyone experience any of this?

Plus, how much were you all getting out (cc's) when cathing initially? Lara is getting 150, sometimes 200 cc's each two hours without drinking much at all. She feels, for some reason, her body is producing excess urine. Anyone ever hear of this? This can be the only reason, she figures, as she cath's carefully, long, to make sure every drop is out.

Thanks,

Carlos

[Kara29]

Carlos and Lara,

Here is what was going on with me regarding the "pouch" or otherwise known as a continent urinary diversion.

This was 6 weeks after my surgery and to this day it has not changed except for the problems with the urethra because of fertility drugs:

Here is what I wrote in 2002: "6 weeks after surgery - July 25th 2002,

Today my bladder is well. Actually my bladder and urethra have no feeling at all. When I feel pain, it's due to the other organs around my new bladder adjusting to this new bigger bladder. I've been drinking lots of water and I have been going to the bathroom every 3-4 hours. There is no pain, no urgency, no frequency, no retention pain.........I would say today was was a perfect 10 for my health. My doctor is filling out my LDT paperwork. I'm sad about not having a job, but I am not ready to go back. He told me today that I had 3 surgeries in one day, MAJOR surgeries. The ilium being cut is major and takes months to heal, the cystectomy is major and takes months to heal, the creation of the neobladder is major and takes months to heal and all of the scar tissue he took out around my bladder will take some time to heal. So he said I was accurate in not trying to push myself back to work.

So most pain that I will be feeling is surgery pain and not related to the new bladder at all, He said as the months go by that I heal, I will have some phantom urgency and other IC symptoms but he says with time that will all be gone"

This was JUST my experience. You asked and I am telling you my tale as it happened.

Here is some more: "Sunday, August 4th, 2002

I don't even know I have a bladder anymore. I feel nothing down there where the old bladder used to be. There have been no phantom attacks of any kind over the past 3 weeks. Now, I tread very slowly as we speak because as you all know, anything can happen and anything is possible, so I am being very cautious about telling everyone that I am IC free becuase there's a part of me that fears it will come back.

But as far as the past 3 weeks, I have no urgency, no frequency, no pain, and no retention pain.........sometimes I forget to chatheterize myself because I have no feeling down there. My Husband keeps reminding me to do it. As far as cathing myself, I feel nothing. I don't feel the catheter going in and I don't feel it inside of my new bladder. In fact, I know I am in the right spot when I can't feel it going in."

I must not have written anything about how much I was getting out. Just write down how much she drinks and how much comes out. Use a hat in the toilet that measures out cc's.

All of us are so completely different and there is no way to answer this for you unless you talk to your doctor. All surgeries and all patients are like fingerprints we are all so different, one can't be compared to another. We can tell you what we went through and are going through but we can't diagnose a problem. That is up to the medical community.

You need to KEEP asking Dr. R and or your ET what is going on. If you feel something is wrong. If Lara feels that something is wrong then it would be good to call the doc to confirm that there is or isn't something wrong.


Kara

[Judith56]

This normal for where she is at right now. The feeling of needing to still urinate even though she no longer can, is what most people feel. I know I did and it lasted for many months. I used to go sit on the toilet till the feeling passed. Eventually it totally went away, I no longer get those feelings. And it is also normal to have pouch pain, her body is still healing, that too will take lots of time. When I think back to my surgery, I was on pain meds for it for about two months after the surgery. As for the the amounts she is going, you get fluid not only from what you drink, but also from foods. The worst thing she can be doing right now is limiting the amount of fluid she drinks. If anything she should be drinking more. This will help to keep things flushed and prevent infection. Trust me, the last thing she needs or wants right now is an infection. If you are concerned about how much she is getting out, then I think you should discuss this with her doctor. Really, it sounds though like she is doing great to be able to get out those amounts- this is what she wants to happen.
As for the not feeling relief after cathing, for me if I hold it too long or I have a huge amount in there, I do not feel instant relief afterwards either, and I have had mine for over 13 years!. It is not like a bladder where you feel instant relief once you empty it. I truly feel it will take Lara at least a few more months before she really senses a big difference. The changes will happen ever so slightly that she will barely notice them, but one day all of a sudden it may dawn on her that things are different and she will realize how far she has come. It is so hard to come home after such a big surgery and expect things to be different and still feel lousy and have other things to contend with. I am terrible at that. When I get sick and have to be in the hospital, as soon as I get home I expect that I will be back to normal and I am not. It is frustrating and upsetting, but with time I eventually get back to being myself. She will too! I had PM'd my number to you, did you ever get it? Please know that you can call me and I would be happy to talk. Judith

[carly]

I wrote you a private message, but I just thought of a few more things. Don't forget some of the other medical problems people get. We tend to blame everything on the IC. Excessive urination is a sign of diabetes. Abdominal pain could be appendicitis. I think the pain is normal. I agree with Judith, my dr. kept telling me, recovery is a PROCESS not an EVENT. I think you should check with her doctor though, and make sure you aren't missing something elso, unrelated to ic or bladder removal. Hang in there Lara, I had a very long recovery. I had a fundraiser last Sunday, and a lot of work that goes into that over several months. I have been in bed this whole week. The Bladder removal is a big surgery, then I had the appendectomy 3 months later. I know it is depressing because you want to feel better immediately, and it is a long hard road. I will keep you in my prayers.

[Judith56]

Carlos, when does Lara see Dr. R or an ET again? I think Kara, Carly and I are all in agreement that if you or Lara have any questions the best thing to do is to call the doctor. The other thing that both of you need to keep in mind is that Lara went into the surgery in not the best of shape. She had been pretty sick for quite some time and because of that it will affect her healing process and may take longer. As Kara said we are all different, everyone heals at trhier own rate. Each surgery is different too so the healing process for one person may be different from someone elses. Hang in there, you made it through the surgery, you will make it through this too. Hugs, Judith

[Kara29]

Great Call Carly. Thank you Carly for pointing out something so incredibly important! :) Pain can be do to so many factors which is why it is important to check with the doctor when we think something is wrong. We will continue to pray for Lara and her recovery and we will all be here when she feels better to come back. Judith, yes, I think you, I and Carly are all in agreement here on this one. This is what support groups are all about to run all of our fears and concerns by eachother and then come up with an idea as to how to handle it. Here's to coming together to help out Lara!

Love and Hugs, :kissing: :grouphug:

Kara

[Kara29]

Lara and Carlos,

I was reading back on this post. I think I read somewhere or was told at one time that the body naturally produces 30-60 cc's an hour depending how much you are drinking or not drinking and if you are having diarhea that will make it less or if you are dehydrated that will make it less too. Does anyone else know the average amount of urine we produce every hour an estimate?

The more you drink, the more you will have on top of what your body produces normally. If you are on IV Fluids you will produce more too.

This would be an excellent question to ask your doctor. I am going to ask mine when I see him on the 16th of June.

Kara