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!