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! 

Diary of a mad IC patient.

I have so much to say… I don’t even know where to start. I keep planning on writing blogs that are going to be so helpful for my IC sisters but then this crazy stuff happens and I just have to tell you all that is going on. I can’t help it. I’m a blogger now, it’s what I do. So as a compromise to myself I thought I would write a quick little update (as I’m rereading this I realize it is not quick or little, terribly sorry) on all that’s going on for my dear friends and family who are just seeing my random venting on facebook but aren’t entirely sure all that’s going on. Then I swear I will write a helpful, positive blog. Or maybe just a helpful blog. Okay maybe I will just write a blog. We’ll see.

Over the last few years my interstims have really been giving me the business… After I had Titus they just wouldn’t stay put from all the weight fluctuations, lifting, and general lack of care for my own body. So for the last year and a half both of my interstims have been off.

I picture them as junky, dead cars parked in my lawn. Except they’re ridiculously expensive, medical machinery and they’re in my lower back.

So I wanted them out.

I was also due for my Cystoscopy with hydrodistention and botox that I get every 4 months so I figured what the heck! Let’s just do them at the same time while I’m under general anesthesia anyway.

Bad idea. One of my worst actually. And I’ve had some bad ideas… Okay, I was just trying to think of an example of one of my bad ideas and I literally couldn’t think of any… I texted my dear sister who usually happily points out these things but she couldn’t think of any. She said: “I would say you think too much to have a bad idea.” So I of course I took that a compliment but then she followed it up with, “but sometimes you think too much to not even let yourself have a good idea in case it turns into a bad idea.” Jeny the Llama… (Did anyone get that? Like Dalai Lama… because it was deep… But Llama because they’re funny and ironically she wrote a very catchy tune about a llama once. We also really like the Emperor’s New Groove that featured a Llama. What was I saying?)

Moving on.

But this time I had a really bad idea… apparently I didn’t do enough over thinking…  

It all started when some whippersnapper of an anesthesiologist decided that my severe allergy of ALL anti nausea drugs was not accurate and decided to give me some new medication that I had never heard of despite my concern. THEN she proceeded to tell me she was going to do a spinal instead of general anesthetic. This was my 5^th botox surgery and my 13^th surgery on my interstims. So I kind of knew what I was talking about when I told her I wasn’t comfortable with that. Once again I protested and expressed my concern and she was basically like, “fine we’ll do the general but have fun throwing up after!”

Meanwhile the OR is prepped and my doctor is in there waiting for me so everyone was rushing this whole conversation so finally I just said “fine but just know that I am anxious. I have had 26 surgeries and I never get anxious before surgery anymore but now I’m anxious.” Her answer to that was to give 4 times the amount of Versed (which is like hardcore valium).

Nighty night Deni.

Then there was some good news.

I woke up from surgery and was not nauseous and had zero pain. I was feeling real cocky about the whole thing and told the nurse in the recovery room I was feeling great so he should send me to post-op and get me some Tom Toast. (My all time favorite nurse is Tom, he works in post-op and makes the most amazing toast. I would pay an exurbanite amount to have Tom live with me and make me toast as needed. Now that I think about it, it might be cheaper to just ask what kind of bread they buy…) Then all of a sudden the pain hit me like a tidal wave.

The nurse was literally on the phone with post-op telling them we were on our way and I said something like “oh weird it’s starting to hurt” then literally within a minute the pain was at a 10! So the nurse hung up the phone and hurriedly filled my IV with pain meds.

Eventually I got to post-op even though I still had tears streaming down my face from the pain. My body from the waist down was buzzing as it woke from the spinal and the pain continued to rip through me. They continued to give me meds but nothing was touching the crazy pain. My back had four big incisions, my bladder was sore from the stretching and injections and my urethra killed from the scope.

I was pretty drugged so I was slipping in and out of consciousness. I do know I ate some Tom Toast and was happy about that and my husband was by my side but that’s all I remember until I woke up suddenly announcing I had to pee!  So the nurse came and got my IV all untangled and I confidently stood up. Then I sat. My legs were noodles. Literally couldn’t put any weight on them at all.

I decided I didn’t really have to pee that bad.

I slept for a while but then I woke up and the pain of my bladder being full of urine after being stretched, poked and prodded was too much.  So with the help of a nurse and my husband I got to the toilet. I sat down with a sigh ready for the painful relief of emptying my sore bladder. But nothing happened…

I waited.

And waited.

But still not even a drip came out.

I sat on that toilet until I was catching my drugged self falling asleep.

The nurse did a bladder scan and found out I had over a liter of urine in my recently harassed bladder.

No wonder I was still in tears from the pain.

They consulted with my doctor and she said I needed to be admitted because she didn’t think I could control the pain at home and they would cath me until the retention let up.

I heard the word catheter and I was ready to make a break for it. Anyone who has IC knows the horror of catheters when you have IC. Pure hell.  I was especially nervous this time because I couldn’t lie on my back.  But my husband and the hard working nurse worked together to get the catheter in while I was on my side. I believe my husband held a flashlight… Thankfully after all the meds they’d been pumping into my IV it didn’t hurt as bad as it has other times.

Then a new nurse came on duty. She was super sweet but for whatever reason she didn’t want me to have to spend the night at the hospital… Which I appreciate but now looking back I think it would have been best for me to stay.

Instead I went home with a foley catheter, the kind that has the bag attached, then they loaded me in my husband’s tiny car and we started our hour and a half trek home. I slept on and off and was always disappointed when I opened my eyes and we were still far from home.

I’m sure a lot of other things happened and my husband could probably fill you in on a lot more but that’s all I remember. I do know that my doctor said the actually surgery went well, I did have some hunners ulcers which she cauterized and it took quite a bit of work to pry the interstims and all of the leads out of my body after all these years.

Then I slept for 2 days. Seriously. I ate crackers every time I woke up to take meds, my husband emptied my catheter bag, and I snuggled with my son a couple times but other than that I slept.

Then 3 days after my surgery my husband removed the catheter as the doctor had directed. It hurt so, so bad. I can’t even tell you how bad. Six hours later I still had only released a few dribbles but it looked like there was more blood than pee. I was still fully in retention. Then my friend called me and told me to put clothes on because she was taking me to my doctor.

They ending up having to put in another catheter.

For whatever reason that catheter hurt from the very beginning, they think it’s because I had already had the trauma from the surgery, the first cath, and the removal but either way it hurt so bad. I couldn’t move without the pain exploding.

So the next day I went to the local ER. There was nothing they could really do except give me a shot of dilaudid to try to get out of the pain cycle.

Any amount of movement moved my catheter and hurt so bad so I safety pinned the cath bag to the side of my bed and I just stayed there. I felt like a prisoner chained to a bed.

I almost made it to the suggested 5 days but the pain was just too much so 4 days after I got the second catheter my husband removed it. Once again blinding pain!

BUT! Five hours after he removed it I was able to pee!!! Hooray! I was more excited that when my son peed on the toilet for the first time.

The pain of peeing after all that trauma to my urethra and bladder was indescribable. It made me shiver and instantly brought tears to my eyes but I think those tears were 90% caused by pain and 10% relief. I was so very glad to get that catheter out of me. 

The next day I woke up still in unbelievable pain and with a horrible cold. My throat killed so I looked in there and my mouth and throat were a concerning red color and covered in sores. Awesome. I couldn’t handle that one last thing so I went to my primary care and found out I had some weird virus that causes ulcers in your throat. Sure. Why not. The doctor informed me they were very painful. Gee thanks, I hadn't noticed. They hurt and it was frustrating but after the week I had leading up to this these throat ulcers felt like fluttering fairy wings.

So that’s been my week.

Oh and… The day after my surgery my Dad got admitted into the hospital with Pneumonia and was there for 2 days. Then when they got home my Mom caught the horrible cold that had started my Dad’s Pneumonia. Then I caught it and for whatever reason it presented itself for me as the dumb ulcers. Now my husband has them. I swear we weren’t playing tonsil hockey (is that seriously a saying? That is so dumb. I take it back.) but I may have used his toothbrush…

Add some drama, pain, heavy medication, a two year old, a holiday, the end of the holidays and general frustration.

It hasn’t been a great week in fact I would easily say it’s on the list of top 10 worst weeks and fairly high on the list too… But seriously it hasn’t been all bad (I’m telling this to myself more than you) some awesome friends have been bringing us dinners, entertainment and smiles amongst the hardships. It has forced us to stick together and just do what we can. Plus I got to catch up on some reading…

I’m really hoping the botox and interstim removals really do help my pain, symptoms and quality of life. PLUS! I’m hoping having those dang boxes out of my back will allow me to wear my super cute new jeans!

Sorry this is so jumbled and my ramblings are so random but if you’ve read any of my blogs you know to expect me to just write because that’s what I need to do.  

Now you’re really excited for my next totally helpful and totally unofficially and inaccurate blog! I really should have gone in to marketing… Thanks for reading my ramblings. Maybe I should get a diary instead...