Stoma Pain

[jgrant27]

I had a mitrofanoff/augmentation done in September. I've been reading the various experience threads, but I have questions that I'm not sure have been covered (I didn't see it anywhere).

#1 I'm continuing to get infections, I knew I'd have one right after the surgery, but this is starting to get very problematic. I finally talked my psyiatrist into prescribing me enough caths to only use them once (uro only wanted me to re-use). Uro says that since bowel was used, it will never be sterile again and there's no point in using new catheters each time....obviously I disagree.

#2 The opening of the stoma is very sensitive, I have to grit my teeth every time I use it. Hurts badly as the catheter goes in. I've been finessing it (using coude tip and twisting gently as needed) and lots of lube...

#3 Ever since the surgery I have had an accelerated heart rate. I've talked to several different doctors about it, an no one seems very concerned. It's quite bothersome to me, and I wonder about long-term effects. I have an appointment w/a cardiologist next week, but I'd love to hear about others experience with similar issues (I also sweat a lot now, which I never had pre or post injury)

[SCI-Nurse]

It'sbeen quite a while since your surgery, so I am surprised at the problems you are having. So many people have written about the good outcomes. That is not to say, you aren't having problems....

1. When you say you are starting to get infections- are they symptomatic? Are you running a fever? How often are you cathing? How much are you drinking and what? That could be contributing to your increased heart rate.

2. The sensitivity of the stoma is also a little surprising. That is a problem that I have not heard often. You might try using a little lidocaine jelly- what does the urologist say? Have you shared this with your sci doc?

3. The heart rate could be from the infection. How fast are you going? Is it in a rhythm or not? (Are you skipping any beats?) Often times an accelerated heart rate is not a "problem"- although it is uncomfortable and a little scarey (been there done that!).

CKF