Decisions, Decisions...

Stop taunting me blinky line. I’m going to start typing… I’m just thinking… Stop it! Well that’s a losing battle. Ok fine. I’ll start. 

It’s been a while since I’ve updated my blog but I have a valid excuse (I could get a doctor’s note if you need proof), I am not being too dramatic (maybe a little dramatic but not as much as usual) when I say that I have been fighting for my life the last two months. The last time I posted I had just had my suprapubic catheter put in and had a horrible case of food poisoning.

You probably would have thought it couldn’t get much worse than that, I know that’s what I thought. Well my dear reader, we were all wrong. I got the worst UTI I’ve ever had in my life two weeks after that. I think the problem was that I wasn’t voiding on my own so I wasn’t feeling the early signs of the infection. So by the time I knew I had this UTI there was no regular old oral antibiotic that was going to clear it up.

It was a Friday when my Mom took in my urine sample and I started the antibiotics. I had done an at home UTI test which was glaringly positive and my urine was thick, chunky and reeked. We all knew I had an infection and it was really bad. So even though we didn’t have the culture results my doctor called in some really strong antibiotics and I started taking them right away! Even with that by Saturday night I was having flank pain like I couldn’t believe. That, of course, meant that it had moved to my kidneys. My pain was a 10 on a scale of 1-10. (I hate it when people (including myself) say "on a scale of 1-10 my pain is 1000". That’s not on a scale of 1-10. So it’s an invalid answer.)

As the pain escalated so did other strange symptoms that quite frankly scared me more than carrying a loaf of bread through a bird sanctuary (if you know me, you know that means I was really scared). I had a fever, I was shivering and sweating, I was so weak and could barely keep my eyes open, I was brutally nauseous and felt sure I would vomit at any moment. It was Saturday night at 10pm so I called the doctor on call for my urologist’s office. The doctor who was on call was one that I had never met so he asked me to spell my last name. I started spelling, J-O-V… then my mind went totally blank. I can’t even explain it more than that… But I just shook my head as I started to cry. My Mom took the phone from me and finished the explanation of all my symptoms.

Right away the doctor said I needed to go in but then continued to ask more questions. After each answer he would confirm that I needed to go in. Then when my Mom told him all the hardcore antibiotics I had been taking for two days and my symptoms were getting progressively worse he told her to hang up the phone and take me directly to the hospital.

I live in a small rural town, (bear with me, this isn’t as random as it seems) the kind that you know you’re in when the scent of cow pies swirl its way into your car vents as you enter the city limits, and there is a small hospital with an “emergency room”. I use that term very loosely. There is never any wait to get into a room and be seen by nurses and a doctor. It’s nice and clean but really small and all the staff are suspiciously young. They are all super nice but something tells me they aren’t used to complex cases of anything. We are just 30 minutes from a skiing area of Mt. Rainier so they are prepared to triage for extreme cases and are used to taking care of basic broken limbs but anything complicated is tricky for them. Even though I know that they won’t understand the complexity of my problems, almost every time I need to go to an ER I end up there. The allure of the immediate care and the 3 minute drive is too tempting to resist. I think I have finally learned my lesson.

Anyway, they ended up admitting me and I spent 2 ½ days in a live episode of some sitcom featuring a small town hospital that has no idea what they’re doing. Again, they were mostly really nice. They just didn’t know what to do with a 26 year old girl that looked healthy, had “just” a UTI and kidney infection, claiming horrible level 10 pain, was asking for an excessive (in their mind) amount of narcotics and had a suprapubic catheter.

So Monday afternoon I asked them to discharge me and my husband picked me up and drove me to the hospital my urologist works out of 1 ½ hours away. She set up a direct admit so when I got there they had me sign a few papers then they whisked me off to my room. They got me settled and treated me with such kindness and respect and FINALLY treated my pain as it needed to be. That evening my doctor came and visited me after her regular day at her office and she set up a plan. She got me on a better antibiotic that the infection wasn’t resistant to and I wasn’t allergic to, set up wound care for my SP tube site that kept re-opening and tearing, set up a plan to sufficiently keep my pain down, got me on a regimen to relieve my extreme constipation and set up some specialists to come visit me too.

I went from a bad episode of Scrubs to an excellent episode of House.

A week later I was discharged, I left there better than I was before the raging UTI started. They set me up with a home medical company that showed up the next day with a delivery of equipment and the lidocaine medicine to do my own bladder instills 3 times a day like they were doing in the hospital. Also my doctor wrote me a realistic prescription for enough pain medicine to get me through to the next stage of my IC journey (which is what this whole blog was supposed to be about).

When my doctor came into my room the day she discharged me she sat down with a sigh. I think after getting reports, hearing from the nurses and other doctors, reading my chart, and seeing me in that setting made her really realize how bad my IC had become. Some time last year she deemed my IC, "End Stage" which just means there isn't anything else they can do for it. Since then my doctor and I have talked about the reality of literally cutting our losses and giving in to this disease. She had really wanted me to try cyclosporine, an immunosuppressant drug, but now that my bladder had stopped functioning all together that isn't an option anymore. The only hope for that drug would have been for the pain.

My bladder is the problem. No matter what we do, I still have horrible pain in my bladder and it does not function as it should. It never has. I’ve always had incontinence and retention but never to the degree that I have the last 2 years. It used to just leak or retain a bit but now my bladder just empties itself whenever and wherever it pleases and now I cannot depend on it to release any urine at all on my command.

So. My bladder isn’t functioning and the pain is off the charts. I’m taking more pain medication every day than a large elephant would like while giving birth. There is only one thing left to do. Take this diseased dysfunctional organ out.  

This morning my Mom, husband, and I are going to see a surgeon that specializes in bladder removal and diversion. I’ve tried to do as much research as I can and write down all the questions I can think of. I am as prepared for this appointment as I could be. There are a lot of ways of doing this and I don’t really understand all the options and differences but that’s why we are going to this specialist.

The one thing I do know... This isn’t a trial thing that I can just reverse if I don’t like it or it doesn’t work. This is final. This is huge. This is the biggest decision I will probably ever make.

No pressure.

I wish I had more to tell you about this but truly I don’t know much. Even smack dab in the middle of the Google Era I can’t find much information about it. All I know is there’s lots of ways of doing it and it’s going to be a pretty involved surgery no matter which one but that this doctor is the go to guy for these surgeries in the state. Also that he does surgeries robotically, I don’t know if that’s valid for me but it’s interesting. He is also a professor at UW. Oh and he likes tennis. And has brown hair.

So, please pray for us. That we find out more information. (Now that I know he likes tennis I’m probably going to make some lame joke about not getting tennis elbow before my surgery… great.) We really need more information. Also that we walk out of there informed not just totally confused by the mass amount of information we suddenly have that we didn’t have when we walked in. (Other than the brown hair.) Then that we can use the information Dr. McEnroe gives us and God’s direction to make the right decision.

If I have the surgery it will change my life no matter how it goes. I could potentially be well, pain free and even live a normal life like I haven’t since I was 12. (Not that I want the life I had at 12, it was fun but I’m really ready to live an adult life without pain… I don’t even know what that’s like! The last time I was pain-free hemp and string were considered the jewelry material of choice and a bare midriff with baggy jeans and doc martins was high fashion to me.) I suppose the surgery could probably go badly too… I don’t even know what the worst case scenario of this surgery would be? Worse pain? The same? Adding digestive issues to the list too? See, this is why we are going to the doctor tomorrow… and why we need prayers. See the number of question marks I’ve used in this blog?!?! Have I mentioned we need prayer?

I’ll update you all as soon as I make a decision. I know this is a controversial thing in the IC world so it’s important to know that I have End Stage IC and I have literally tried every single treatment (other than cyclosporine which I mention won’t work for me at this point), it’s been 14 grueling years of trying so many different things. Surgeries, oral medication, strict IC diet, suppositories, instills, interstims, naturopath options, physical therapy, massage, acupuncture, and probably even more that I can’t remember right now. I have been optimistic, pessimistic, encouraged and disappointed. I now have very low quality of life; I’m in bed 90% of the time. I have a catheter 24/7 that my family has to help me care for. I can’t parent my son at all. I can barely be a wife, daughter, sister, aunt, granddaughter, niece, or friend. The narcotics make my fuzzy and totally unlike myself but it’s better than what the pain does to me. It is time for drastic measures.

I will update you all as soon as I can, sorry for the excessive length of this blog I just have so much to say apparently. My fingers are tired and I keep accidentally knocking the scissor like clamp that’s keeping my instill inside my bladder. So I’m going to do a quick read through but most likely there will be grammatical and spelling errors that I would typically mock others for but I just don’t care right now. I hope you all still love me. Speaking of that, thank you all for your love, prayer and support for me and my family, whether I’ve known you my whole life or if we’ve only just met or if I don’t even know you, you are playing an essential role in my journey.

My appointment is at 9:30 tomorrow. So if you think of me any time before, during, or after that… A prayer for an answer, clarity and peace would be glorious.

I always like to add a recent picture to my blogs to show the happiness amongst the struggle. This one shows that though my heart breaks when I think about the fact that I’m not raising my son right now, he is so lucky to be spending time with so many wonderful people in our family in my absence. Whether you know them or not you can’t help but smile at this picture but since these two are amongst the most loved people in my life I can hardly stand how much I adore it. It makes me a speck less sad that I didn’t know he can now eat raw carrots without needing the Heimlich maneuver. Over and out!

Super Pubic to the Rescue!

I guess it's past time for me to write a blog. I've been so overwhelmed with pain and drugs that it's been hard to even consider sitting here and typing about the last couple weeks. I guess I thought I had to get through the worst of it before I could really talk about it. I feel like I can see the light at the end of the tunnel... but then again I am pretty drugged. It may be a lightning bug or rainbow... 

On Tuesday it was two weeks since I went in for yet another surgery. This time they put in a suprapubic catheter (for a while I thought it was called super pubic catheter, hence the name of this blog). As with most bladder surgeries they started with the scope voyaging to my bladder then used some horrible hole punching apparatus to make a hole about the size of a nickel all the way through my lower abdomen and into my bladder. Then they put a silicone tube into that tunnel then sutured the hole around that.

The most frustrating thing is where they put the tube. I don’t know if they just have to put it where they did because that’s where my bladder is or if it’s a cosmetic choice like another doctor told me but whatever the reason… It’s stupid. It’s right in my “crease”. I don’t know about other women but since I had my son, Titus, my lower abdomen has been… flappy, for lack of a better word. No matter how much weight I lose my little flappy pouch stays with me. It’s lovely. No, it’s not. Anyway so if I’m sitting my pouch goes over my tube causing extra pain and (ew) dampness to the area. If I’m lying down then it’s in the shadow of Mount Flap which makes it hard to bandage. If it was put in just an inch higher or lower I feel like the healing process and daily bandaging would be much easier. But what can I do? Nothing. I guess I might be happy that the scar is hidden whenever I finally get it out but something tells me I won’t care. My body looks like I was the human prototype for the game “Operation”.

See what I'm saying? Obnoxious placement. Don't mind the fat, stretch marks, and irritated skin from the bandages! 

Proof that I'm definitely not perfect but not as fat as the above picture implies! 

I'm sure for a normal person it would have been a painful surgery but for someone with IC... Get out of here!! I can comfortably (or uncomfortably as it were) say I have never experienced as much pain as I have the last few weeks recovering from this.

Two weeks ago I was desperate for anything that would give my thrashed urethra a break. I thought anything had to be better than continuously abusing my saddest body part! I begged anyone that would listen to just give me this kind of catheter.

Amongst my desperation and urgent pleas we somehow forgot to find out anything about the surgery recovery or post-op care. So it's been interesting trying to patch together a recovery plan from phone calls from nurses, tips from family and friends in health care and what I have found online. My doctor is an hour and half away and there's no way I could sit in the car with old flappy suffocating my whole owie area while it's still so unhealed. 

I could write a whole blog about caring for and bandaging your suprapubic catheter but I'm too tired right now. We are becoming quite the experts though!

A few weeks ago I mustered up enough courage and strength to go to my cousins for the Super Bowl and we had a great time! Especially since our beloved Seattle Seahawks annihilated! I felt like I was finally on the way to feeling better. The day after that I felt well enough to attempt to eat actual food! (I lived on crackers and smoothies for weeks before this.)

My mom made us some bacon, sausage and eggs. I ate with enthusiasm. I only had one of each and I almost asked for more but didn't want to push it.

That night I kept waking up with my stomach turning. I blamed it on taking meds without enough water and being really constipated. Then I woke up around 6 and I could not stop vomiting. It's horrible to vomit. For anyone. Under any circumstance. But I had this fresh wound with a tube sticking out of my lower abdomen. Each time I threw up was worse than the last. It was pain and terror unlike anything I've known. I won't go into any more details.

Not long after that, a pale, sickly looking woman that was carrying a bowl that looked somewhat like my Mom came into my room. Oh the horror. I can handle being sick. It’s what I do but I couldn’t handle my amazing super hero Mom being sick. She kept trying to tell me she was feeling better but then she would quickly run to the bathroom proving that she wasn’t…

By 11 am I couldn't catch my breath, my heart was hammering away, I was so dizzy, I was equal parts shivery and boiling. Plus the pain was horrendous and I couldn't keep any medicine down. It was just all around horrible. I knew I needed help. With the catheter I was so susceptible to infection and since I had been sick for so long before this started I was severely dehydrated. I considered calling 9-11 because I didn’t want my Mom to have to take me to the hospital but she kept trying to convince she was ok. She even put on jeans and a sweater. This pale, weak imposter was wearing my Mom’s clothes. Unfortunately I was in an even worse state and finally gave in.

I called my mother-in-law to meet us at the ER to get Titus. My Mom tried to stay with me in the ER but she was running back and forth to the bathroom. We were both really sick but since I was a week post-op with an open port to my body I needed to be watched. I finally convinced her to go home telling her I would need her to be well when I got home from the hospital so she went home to rest.

My heart rate was averaging around 140, my blood pressure had sky rocketed, and I kept almost passing out. I was really sick. Sicker than I have ever been.

To illustrate just how sick I was... I am weird about the OTHER kind of potty. I'll take about the delicate intricacies of my urinary process all day but if I say the word bowel I can't help but blush. I don't even like to ehem... Have a bowel movement at anyone else's house or even in our attached master bathroom if Zach is in our bedroom. I am very regular and happily brag to my doctor about my perfect functioning digestion but otherwise I hate talking about anything in that... Department. On this day of doom I did not care. They brought in a bedside commode and I stumbled between the bed and the wannabe toilet several times, Once even falling to the ground. My too big, not tied gown hung off my sickly frame while I had ... BM's... In front of male and female medical staff without a second thought.

They admitted me to the hospital, pumped me full of fluids, and put me on a regimen of Benadryl and dilaudid around the clock. Unfortunately with all my allergies to antinausea meds I have to depend on Benadryl and nausea patches on a day to day basis as well as these acute circumstances. It’s not perfect but it takes the edge off.

After several tests they determined it was food poisoning. At the time I forgot about the sausage so the doctor assumed it was the egg but after talking to some dude at the state agriculture and food safety office, he said it sounded more like salmonella which you get from ground meat. Then I remembered I had the sausage. Just in case anyone was wondering… I’ll never eat sausage. Ever. Again.

My public service announcement for the day. Thoroughly cook your ground meat. You don't even want to hear what the guy told me. Just do it.

After 9 liters of fluids over more than 24 hours my vitals settled back to normal, the nausea and vomiting eased, and the pain was manageable with oral meds so they sent me home.

Once there I got situated and back on track with my SP tube healing even though that whole catastrophe sent me back several days.

Since then I've been pretty much stuck in bed. Any movement, pressure, touching, or tugging of my tube causes immediate nausea/ black out inducing pain. It’s somewhat better when it’s thoroughly bandaged but my poor sensitive, Native American skin is raw and irritated from the constant bandages that are covering and securing my tube. There's a ballon right at the manmade exit of my bladder keeping it from pulling out completely but the movement still really hurts.

What's totally bizarre! When someone empties my bag or bumps my tube in some particular way the pains shoots down through my urethra. It's so weird. The doctor at the hospital said it’s some kind of deferred pain. Whatever. It’s stupid. 

A couple days ago my exit site and my bladder seemed like they were on the road to healing so I clamped my tube to allow my bladder to fill. I chugged water and in no time I felt the familiar pressure that my bladder was full. I said a prayer then waddled into the bathroom. The second I sat on the toilet my bladder emptied its entire content all on it owns! 

It was wonderful! I'm pretty sure I deserved a sticker and an m&m like Titus does when he tinkles in the big boy potty! My bladder spasmed a bit towards the end but I was able to pee and I was thrilled!

Unfortunately that only happened a couple times until I was back in retention. I plugged the tube with the bag back in then unclamped my catheter letting it do all the work and in no time my bladder was blissfully empty again. The worst part after that was that my body was all confused so some urine tried to come out of my urethra even though the tubes were hooked up. The pain and burning was unreal.

I was super discouraged after that but chose to focus on the victory and the first step towards recovery!

In some ways it's been so nice to have this catheter. I don't have to worry about any of the traditional side effects of IC. No urgency, frequency, retention, incontinence and most of all no burning during and after I urinate.

However... My bladder is always hurting from the incision and the foreign object residing inside that likes to move around and put pressure on a new place every day. A lot of times the pressure is on the bottom of my bladder which is also the top of my urethra and that kills! Also there is a gaping wound in my lower abdomen. So that’s not too cozy either…

After I took the pictures of me posted above the garter type band around my leg that holds my catheter in place suddenly slipped down. The pressure pulled my bandages off and there I stood in sheer agony as the weight of the catheter pulled everything down. Holy hell. Pure pain.

Things like that happen all day.

It's horrible. Trading one horror for another, one hell for another, one misery for another.

But I need it now. I have to be able to empty my bladder and this is the only option I'm left with. So I lay as still as I can, keep my bandages as secure as I can, and keep up the maintenance and cleanliness of the tubing and exit site.

My goal is to have this out sometime in March. Once I’m back to normal (which is hilarious because 2 months ago I thought my normal was pretty horrible) I am going to celebrate!!

Tomorrow is Valentines Day! I'm hoping I can go downstairs long enough to do a valentines day craft and make cookies with my 2 year old. Then my husband and I are having a fancy picnic on our bed in the evening. I told him I might tape some lace to my bandages just to add some romance to the evening! Ha! I'm trying to not put too much pressure on myself but I'd be sad to miss out on all of the fun and love of that silly holiday!

Anyway. I just wanted to update my loyal readers. I'm having a lot of pain, nausea and muscle tension so I'm pretty drugged. I'm sure I forgot some things or said too much but if you’re a frequent reader you’re not too surprised by that…

Thanks for all your continued love and support!! I'll try to keep you updated as things change! 

Special shout out to my amazing team of family and friends who have helped me through this horrible season of life. All my cousins, my aunts, my Grandparents, my sister, some good friends new and old, my parents, and my beloved husband. 

Also thanks to my darling son Titus and our newly adopted rodent (hamster, rodent same diff) Richard Wabbit for bringing so many smiles to my face through the pain!! 

Titus stopping by to visit me in bed!! Such a sweet boy! 

The latest addition to the family! Richard Wabbit! 

Zach and Titus went outside to play in the snow the other day and I took pictures from the window! Love them! 

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!

Botox 101

Lately a lot of people have been asking about the relatively new treatments using Botox for interstitial cystitis. I'm sure there are lots of people out there who have success with it but a sweet IC friend and I have been two of the biggest Botox advocates. 

So we are both frequently asked questions and are sharing our input about the whole procedure, side effects, outcome, ect. Rather than typing this a million times I finally decided to write a blog with as much info about it I know! 

*Pause*

If you haven't yet go read: 

www.how-ic-it.blogspot.com/2012/06/most-unwrinkled-bladder-in-west.html

and 

www.how-ic-it.blogspot.com/2014/01/diary-of-mad-ic-patient.html 

Did you read them? Ok good, moving on.

First and foremost... Botox in your bladder is NOT for pain. It is for overactive bladder symptoms. Period. I know pain is the hardest to treat of all the IC symptoms and you're desperate but unfortunately this isn't going to work. 

So, Here goes a totally unmedical and potentially inaccurate explanation of how Botox works.

Okay so think about people you see on tv that have clearly had too much Botox in their face. It looks frozen in one expression. (Have you seen Meg Ryan lately? She's always been one of my faves but it's a real pity what she's done to her face...)

Basically what I think the Botox does is freezes the bladder. So that if you get the right dose for your body it will tighten up and strengthen a bladder that is otherwise weak and loose. Therefore reducing frequency, urgency and incontinence. 

Of course with that is the risk of getting too much Botox and your bladder freezing too tight, making it hard or even impossible to void. 

As far as how the procedure works, I'd think each doctor does it a little different but my awesome doctor, Dr. Karny Jacoby in the Seattle area, does it in a very "IC patient friendly" way. 

I go to the surgery center at the hospital, check in, get in full surgery mode: gown, nonslip socks, and hat. They get my IV started and I answer the same questions I've answered thousands of times... No I don't have any crowns, caps, or loose teeth. I don't smoke, drink or do recreational drugs. Ect, ect, ect. 

When we're all ready they wheel me into the OR, depending on the anesthesiologist they might give me some happy drugs on the way or they might make sure I'm on the table in the right spot before they send me to la la land. Then they use general anesthetic to put me out and get to work! 

Then my doc empties my bladder and sends a scope up there to see what's going on in there. She fills my bladder with water beyond it's measly capacity to attempt to stretch it (what's known as a hydrodistention), then if there's hunner's ulcers she cauterizes them, and she injects the 50 units of botox all over my bladder. (I'm not sure what order she does those things in.)

She may do other things (I'm thinking pre-teen sleepover after the first girl falls asleep... Bra in the freezer? Put whipped cream in hand and tickle with feather?) but next thing I know I wake up in the recovery room full of other people waking up from surgery... Not entirely unlike some syfy movie, what was that one called with Keanu? 

Usually I cry quite a bit here from the pain when I first wake up. They give me good drugs that make me fall back to sleep and then I wake up crying again. We do this several times until I eventually wake up and can speak and drink some water.

When I'm doing better they push my bed and me to "day surgery" and pick up my companion (usually my mom or hubby) for the day along the way. 

Some hilarious things have happened in that room and some horrible things too. I don't know if it depends on what drugs the anesthesiologist gives me or what but a few times I've been so weird and funny. One time I laughed hysterically that my favorite nurse Tom's name backwards was Mot. Oookay.

Other times I've had allergic reactions, most every time I have nausea and vomiting, and of course the dreaded first pee. 

The first pee after all that harassment to my bladder is rough. We have formed a strategy to give me a half dose of heavy duty IV meds, go pee torturously then they give me the rest of the meds right after.

I've had many strange things happen during the first pee... Once my pee was thick and black, my husband compared it to motor oil, after a time that Dr. Jacoby had to cauterize several hunner's ulcers. Most every time there's lots of blood. 

No matter the looks of it, it's always really painful the first time but each pee after that gets a tiny bit easier. 

There have been a couple times when I think my bladder is full and I try to go but nothing comes out. I get back to bed and rest while the fluids pouring into my IV fill my bladder and then I try again. Then I can usually get it out, bracing my sell against the pain.

Then I get into a recliner and (assuming hopefully that Tom is my nurse) eat some of the most delicious toast in the whole world. (I'm pretty sure Jesus has it for breakfast). If I can keep that and some water down then that's my ticket out of there! 

I clumsily get dressed in my cozy clothes I wore there, they unhook me from monitors and the IV then I'm outtie. My companion scampers off to pull the car up and the nurse wheels me to the exit. 

Depending again on the anesthesiologist, my post-op pain meds, and how long the whole recovery process takes I can be many degrees of drugged for the ride home. 

I'm always sleepy but sometimes I request a smoothie or shake for my scratchy throat and just take long blinks until we're home. Other times I sleep the whole way home. Sometimes it's a mixture of those two options. (One time we got pulled over for being in the carpool lane because the cop couldn't see me laying down. He told me to sit up and so now I have to rest sitting up like some kind of lazy night watchman.)

A tip: it hurts so bad to sit after all the damage to your urethra so bring soft pillows and blankets to alleviate some of the pressure for the ride home.

When I get home I always go straight to bed and sleep until it's time for more meds then I wake up, eat 4 crackers, take more meds and go back to sleep. Repeat for 24 hours. 

The first recovery was a solid week of excruciating pain and horror, I told my mom I would never ever do it again but after realizing what a huge difference it made I did and since then each treatment is easier and shorter. It's kind of like maintaining your yard. When you first move in you spend days making it perfect so that going forward you just have to maintain. After that you just mow and weed as needed verses renting giant machines to clear out major problems. (That was a weird analogy... Moving on.) 

The Botox takes a couple weeks to work but then it can last anywhere from 4-9 months. 

My biggest reason for trying it originally was because I had such bad incontinence, like not just a sneeze leak but a full on bladder emptying no matter where, when or what I was doing. 

I was willing to do anything to potentially help that symptom. Incontinence is one of the most life altering symptoms in my eyes, an adult diaper or pads built for these things don't even kind of hold the drenching pee and they irritate everything down there anyway. So when I'm flared and having lots of accidents, I just stay home and sit on pee pads that aren't much different than puppy training pads. 

But Botox was magic! It worked miracles for me! Like I went from my bladder totally emptying on it's own 1-2 times and leaking 5-6 times every day to never having any accidents at all. It has also helped with my urgency and frequency but I never really had those too bad. 

The first Botox treatment lasted about 6 months until I started having accidents again so we quickly scheduled another procedure and the next time it was 5 months. Since then we've been doing it every 4 months whether I need it or not. 

My first Botox was a year and a half ago and I have had 4 more since then. Each recovery time is shorter and easier... Except... The Botox procedure I had 2 and a half weeks ago, it has been the worst one yet. I ended up with full blown retention this round but I have a theory! 

Here it goes...

They gave me a spinal this time to alleviate some nausea (against my protest) so it took my body way longer to wake up. Right after surgery I couldn't go but the pain in my bladder was so intense that they did a bladder scan and I had over a liter of urine in there so they sent me home with a foley catheter (the kind with a bag). I had that for 4 days then removed it and was still in retention so I got another one. Then I got that one removed 4 days after that. I was able to void but right away I got a horrible uti from all the cath business. Then 5 days after that I was back in retention...  I was trying to self cath instead of getting another foley but the last time I did I went in too far and jabbed the top of my bladder... Not only was it self inflicting torture multiple times a day but I felt like I was doing more harm so I got another Foley catheter. 

 I'll have this one in 8 days total. Tuesday I'm going to my doctor and she's going to fill my bladder with water, remove the cath then see if I can empty my bladder on my own. 

If I lay super still in bed with my cath hooked to the bed frame and take pain medicine I barely notice it... But anytime I move, try to walk, empty it, or get off my med schedule... Sky rocket pain. So I'm just staying in bed... For 3 more days. 

Last night I attempted to go downstairs for dinner and ended up whimpering in bed with ice and meds then the pain pulled me out of sleep when those wore off. 

Anyway I think there's just been lots of trauma to my whole urinary tract the last almost 3 weeks and it's on strike. I'm really hoping it decides to get back to work real soon... 

So back to the Botox. Even if I have to have to cath for a month I would still do Botox again. It would at least be worth another try. 

It definitely has some potentially negative side effects but if you have any severe over active bladder symptoms it's totally worth trying at least once. 

A few notes: I've never been one to be able to handle getting cathed in any form but it's amazing what you'll do when you feel like if you don't drain your bladder the urine might start coming out of other orifices. 

Also, if you have IC- never, ever let any doctor do anything with a scope unless you're under general anesthesia. My doctor said with a regular patient that just has an over active bladder they would do this procedure in office with lidocaine but there's no way an IC patient could handle the pain. If the pain of the procedure is any worse than the pain when I wake up from it then I guarantee she is right! 

Okay! I think that's about it but any other questions, I'm an open book! Feel free to message me on my Facebook page, www.facebook.com/how.ic.it.by.deni

(Please don't sue me for any medical inaccuracies. I'm in no way a professional, I'm just sharing my experiences and opinions!) 

Wait. One more thing. I want to especially thank my Aunt Claudia, my Grandma, my Mom and of course Zach and Titus for helping me through these last few weeks of horror. With anything from phone conversations to emptying my cath bag to taking great care of Titus to just making me smile they remind me how blessed and loved I am, even when I feel useless and burdensome. I'm so lucky to have such a great recovery team, I have no idea what I would do without them! 

Snuggling these guys and watching movies makes being stuck in bed much better! 

A Picture is worth 1,225 words.

As I wrote in my last few blog this has been a really difficult recovery, my 26^th surgery and by far the hardest recovery. It has been just one complication after the next. Today yet another one came up, everyone told me to expect some UTI (urinary tract infection) symptoms for a while after getting the catheter removed because any time you have a foreign object in your body it will leave bacteria.

So I ignored all the clear signs of a UTI. Burning (which I always have), urgency (which I always have), frequency (which I sometimes have), feeling like I might just pee at any given time (what I like to consider “loose pee”), and of course my pee was dark, thick, cloudy, dare I say chunky without someone passing out, and most disgustingly rancid smelling.

Each day it progressed but it wasn’t until last night that I knew it was serious. I had tons of blood coming from somewhere down there and we all know it’s not from my womanly parts (considering I have a full hysterectomy 3 months ago). Then I felt feverish. I seriously considered going to the ER but honestly I was just too tired.

I woke up this morning and the bleeding had let up but the rest was still bad. I also felt really sick. I can’t even really explain it… I just felt sick. Sore, shivery, hot, tired, uncomfortable in my own skin… I knew I needed to get checked out soon. Considering my urologist is an hour and a half away I decided to just go to my local emergency room.

Nothing especially interesting happened there… My mom got chased down by the security guard because she was carrying Titus pretend dog kennel, I put on my hospital gown and Titus said “cool shirt momma”, they gave me toradol (even though I’m pretty sure I could find stronger drugs behind the bleachers at a jr. high), they gave me antibiotics via an IV that I (obviously) had an allergic reaction to, and was told by the nurse that the results of my urine test were the worst she had seen.

 Then they sent me home full of dilaudid (which I convinced the doctor to give me when I told him I had a whole bottle at home… then he probably called some local school principles and told them to be on the watch for me behind bleachers) and benadryl. I came home. Took my pants off, put ear plugs in and my eye mask on and slept. I was woken by a bouncing toddler stage whispering “mama sheeping, shhhh” when I pried my eye mask off he had the biggest smile and said “hi mama! Snuggle mama!”

That helped.

I took another dilaudid and that helped too.

So I was feeling semi okay for a couple hours then the pain just took over me again. I was sitting in my bed crying, rubbing my swollen belly that looks 5 months pregnant except it’s not... It’s just from my bladder full of infection and pain. My husband was snoring his face off, Parenthood was on pause and I cried. I don’t want to do this anymore. Seriously. I’m done.

Please don’t think this is a rare occurrence but it was an especially bad pity party… The whole shebang, metaphorical hats and streamers even.

I knew I had to deploy one of my “Deni’s 5 Ways to Leave a Pity Party”.

1. I pray.  (I plead God to just get me through this. I have accepted this is the life that was meant for me (for now) and it is coming as no surprise to Him but I’m sure it’s breaking His heart to watch me suffer.)

2. I try to distract myself. (Friends reruns, a phone call to my Grandma, pinterest, ice cream, pretty much anything not related to babies or pain.)

3. Snuggle with my husband and let him tell me it will be okay. (I don’t know why this works but it does, his arms are magical and forehead kisses are magical.) Or snuggle with my 2 year, kiss his head, stare at every single feature. (He sometimes can't contain his love, he says "love you mama" then squeezes me so tight and sometimes even bites me... Tiny Edward Cullen.)

4. Talk to my mom. (She lets me have a pity party (she brings the metaphorical cake) and cries right along with me.)

5. I look at pictures. (The topic of this blog if I ever get to my point.)

I post a lot of photos on facebook, instagram and even in this blog… I take thousands more than I post. (Yes, I know that’s hard to believe…) For me pictures aren’t about duck faces or looking double t hot but about capturing moments in my life that are easy to forget when the camera is off and I’m in bed for the 5^th day in a row and don’t even know what the weathers like or what food we have in the fridge. When I feel like I cannot do another day with this pain I look at these wonderful gems.

They are my most prized possessions, pictures from my childhood, with my family, with my friends, when Zach and I were dating, our wedding, my pregnancy, and of course Titus' entire life. I pick a random event or date and just peruse through them suddenly remembering things I would maybe have forgotten without these still shots of our lives.

I have to do it.

It reminds me I've gotten through hard times before and in spite of my health I have had, and continue to have, a wonderful life.

So yes, I take pictures of you while you’re carving your pumpkin, in your swimsuit floating at the lake, in 10 layers lying in the dirt cutting down a Christmas tree, trying to fly a kite, holding my son, or even take a selfie of you and me. It’s what I do. Deal with it.

I over share, I suck at keeping secrets, I’m a toucher, I am sarcastic, I tease, and I take pictures. It’s who I am, take it or leave it. Years from now I will look back and remember the time I over shared about something you would have been happy to not know, blabbed your secrets, touched you (not meaning that as creepy as it sounds), and sarcastically teased you while taking pictures and you will thank me for the reminder of that fun (sounds more awkward than fun perhaps) time. You’re welcome.

It will be filed under 2014, January, Deni being obnoxious.

I was sobbing as I started this blog, I intended it to be some deep portrayal of how I get through hardships by putting myself into better times through looking at fun old photos but you know me… I get easily distracted. That should go on my list too.

I swear those interstims and botox blogs are coming up real soon…

I just clicked random folders and picked any photo that captured a moment that I would like to jump into right now, I really have had a wonderful life! (It's 1:15 and I want to post this blog so I'm leaving the photos as they are... all haphazard and not in chronological order, forgive me!)