Hell cath not fury like an IC patient scorned

I don't know where I left off on my other blogs so I'm going to quickly summarize the last month or so.

December 30th I had my interstims removed and had a cystoscopy with hydrodistention and Botox.

I have been in full on retention ever since then.

I've been to the ER 5 times since then.

I've had 4 Foley catheters since then.

I've self-cathed like 5 times since then.

I've taken almost 100 dilaudid since then.

I've only left the house twice to go some where other than a hospital since then.

I've been barely eating so I have lost 7 lbs since then.

I haven't peed on my own once since then.

Tuesday I went to my dear urologist (I don't care where you live, if you have IC get on a plane and come to Seattle to see Dr. Karny Jacoby) where they filled my bladder with water using the catheter I had in at the time. Then I sat on the toilet for a while until I accepted it wasn't going to empty.

But my beloved doctor didn't want to put in another foley catheter because of the horrible UTI I haven't been able to shake.

So I was given a quick review on how to self cath, a bunch of speedicaths and lidocaine then I was sent on my way.

This is a Speedicath Catheter. Its about the length of my palm. Looks like a tube of lip gloss. 

Then you twist and pull to open the seal and it looks like this

Then you rock it a bit until the cath comes out. 

This is the actual catheter, it is pre-lubricated and sterile.
So you just stick that tube part in your urethra until the urine starts to drain out.  

There is a little vent on the bottom where the urine comes out.

Then you use put the lid back on and toss it! 

They are really very handy and easy to use! To us ladies with IC any catheter is like pure torture but these aren't horrible. So when I got home and my bladder was so full it felt like it would burst I cathed myself. It definitely hurt and tears were shed but after drenching my urethra in lidocaine and taking pain meds it was tolerable.

Then before I knew it my bladder was full again and I followed the same instructions. I got the cath in with no problem, it drained my bladder, but then all of a sudden something happened and I could not get the catheter out.

Every time I tugged it or moved it at all the pain rippled through me. I was literally yelping and screaming in pain. My husband came in and tried to calm me down but I just cried hysterically saying "I can't do it, I can't do it!"

I tried different angles and positions but no matter what I did the pain exploded when I pulled with any amount of pressure.

I got in the shower, because that's what I do when I don't know what else to do, but even that didn't relax my muscles or bladder enough to release the catheter.

Finally I just realized I couldn't have a catheter hanging of me much longer and I literally just took a deep breath and yanked.

Yanked.

It felt like shredding. Like it was actually a pickaxe that I was pulling out of me. It dragged rubble and flesh out with it.

Sorry. That was grotesque but imagine feeling it...

After I finally got it out, I laid in bed shivering, crying, vowing I would never do that again. I took lots of medicine and slept fitfully all night long from the pain.

Problem though... I woke up the next morning with a full bladder.

I begged and pleaded while I sat on the toilet but it wouldn't release a single drip.

So I had to torture myself in the same way... Except it was even worse because of the trauma I had done to myself the night before. This time after I yanked the speedi-cath out it was bloody and bits of bladder were caught on the little eyelet that the urine drains of. (Later after talking to my doctor she said that your bladder naturally collapses when it's empty so it sounds like it was trying to collapse even with the catheter in there. Yikes.)

I shivered and cried while I laid in bed trying to figure out what to do. My doctor didn't want me to have another Foley catheter but I clearly couldn't self cath. My doctor and her staff were all out of the office for a conference so I decided to go to the ER at the hospital that she works out of in the hope that she would get my messages and be able to come there.

After my dear cousin dropping everything and driving 3 hours round trip and my husband getting off work early I realized that plan wasn't so good.

The ER doctor called and talk to one of my doctors partners (who doesn't work with IC patients and probably specializes in erectile dysfunction or something) who kind of balked that I was at the ER for "a chronic condition" so the ER doctor ordered me a dilaudid pill (the exact same thing that I had a whole bottle of in the car) then told the nurse to go ahead and put in a Foley catheter...

Right before jamming a tube about the width of a pencil up my urethra she noted how bloody, raw and irritated it was.

Then they sent me home as soon as I stopped crying.

It wasn't the ER doctor or nurses faults at all... But I don't know who might read this so I won't say names but let's just say... There is a "urologist" in the greater Seattle area that needs to watch his back...

Anyway, after about 5 minutes into the drive home I lost it again, I was sure I couldn't keep this catheter in so we stopped at another ER on the way home.

Another bad idea.

Before I even saw a doctor or a nurse the social worker came in because my name pinged as an ER hopper or drug seeker since I have been to so many recently...

After explaining the whole story she actually ended up being an awesome advocate for me but unfortunately there was just nothing they could do for me without my urologists consent.

So they sent me home to suffer until Friday when my doctor would be back in the office.

Since I got home from that ER tour I've been in bed and taking dilaudid every 4 hours just to keep the pain below a 10. I tried a new lidocaine cream but some yahoo down at the factory thought it was a grand idea to put peppermint in it. So not only did it burn from it getting in all the irritated areas but my lady bits smell like a candy cane!

My dear Dr. Jacoby called me Friday morning and she decided the best thing to do is to put in a suprapubic catheter on Tuesday.

Which is a catheter that bypasses the urethra all together and goes out from the bladder through and out an incision on my lower abdomen.

So it's another surgery, just a couple days short of a month after the last one bringing my total to 27, but it shouldn't be too big of a deal.

Well... Honestly, I don't know much about the whole procedure but I'm looking forward to letting my poor urethra rest for a while.

The best thing is, I can clamp the cath tube and allow my bladder to fill so I can try to void on my own every so often. Then as soon as things are up and running again I can remove it and get back to "normal" but as of now the plan is to leave it in until I start cyclosporine!

Anyway... This is a lot of information and it's kind of gory but I figured some people might be wondering what all has been going on lately.

We have no idea why I'm suddenly having such intense retention. It could be from removing the interstims I've had the last 10 years, from all the trauma of numerous catheters, the never ending UTI or maybe the Botox has built up over time.

I'm praying this is short lived and that the suprapubic catheter will be a good solution until the retention let's up and that the surgery will be quick and easy!

Thanks for caring, reading, loving and praying.

I'm so blessed to have so many people on my side during this unbelievably difficult and PAINFUL time! 

This is a prayer shawl that hand knitted and prayed over, It makes me so comforted and warm inside and out!