I Found Hope...

The last two blogs I wrote were pretty superficial, not really detailing the nitty gritty side of the recovery from the radical cysectomy, a total bladder and urethra removal, I had just over 5 weeks ago. I wrote about the actual surgery and then all about the things I need to do and maintain now that I don’t have a bladder. I wrote those blogs truthfully but I definitely sprinkled some glitter over the really hard parts. 

As difficult as this will be for me I know I need to open up and tell the rest of the story... After I posted the last one I was bombarded by questions, comments, and even praise but it was more than I could take while I was still deep in the murk and mire of the recovery.  

I thought I was prepared for the intensity and extremeness of this recovery but I didn’t have a clue. I have had 29 surgeries before this one… Each surgery and recovery was different but they still followed a similar pattern and recovery “style” but this one threw everything I know about surgeries and recovering straight out the window.

Usually I lean heavily on the support of my ginormous family and few good friends. I usually spend a couple days sleeping then I want all the distraction and company I can get. I chat on the phone, I have visitors over, and I just recover in the midst of the regular going ons of my family.

I knew this one was going to be different and obviously no other surgery had been nearly as serious as this one but I figured I would still follow that pattern pretty closely.

Not so much.

Including in-laws and extended family I have over 100 family members that I consider myself close to, people that I could tell my deepest secrets to (I guess telling 100 people would disqualify them from being deep secrets (I’m a horrible secret keeper, even my own aren’t safe)). Usually these family members- through blood or law- are a huge part of every area of my life, especially my illnesses over the last 15 years.

After this surgery, my love and trust of them didn’t fade but I was in this recovery so deep I could barely deal with it on my own… I couldn’t bring anyone else into it. I had to hunker down and I had to tell myself to breathe every few seconds, I had to remind myself I did this for a reason, I had to pray- sometimes several times in a minute, I had to sleep, I had to eat and drink, I just had to get through this.

The funny thing about being loved so completely by so many people is that your pain causes a lot of others pain. I can’t explain it more than that. I just know when I was at a place where I could barely handle my own pain I just couldn’t bear the weight of anyone else’s.

So. I pushed everyone away. I kept a little group of less than 10 people that I opened up to a bit but I still kept a pretty tight lid on things. It was only when I was with my husband and my Mom that I could totally let my guard down. I saw the pain in their eyes as I moaned in agony, as I sobbed when I saw the grotesque changes to my body, and when I dry heaved after hours of vomiting every ounce in my stomach. They didn’t just watch me recovery, they felt every pain- both physically and emotionally- with me. As much as I hated hurting them through my own hurt, I needed them. Selfishly, it was helpful to share some of the burden but I hated hurting the people I love most. 

I posted regular updates on facebook and would answer texts as my consciousness allowed but I barely wanted to talk on the phone and had very limited visitors. Even when I did talk to them I never really let on how bad things were... So not many people know the severity of this recovery. 

For many reasons I feel like I need to share some of that with you guys but unfortunately or fortunately, depending on who you ask, now that I'm on the other side of the pit of misery I will never be able to fully explain it. Still, I need to try. So... here goes nothing... 

The day I got home from the hospital was a long day but I didn’t care, my Mommy adrenaline kicked in and I wanted to gobble up my 2 ½ year old son, Titus. I hadn’t seen him in 8 days and he was just as luscious as I remembered but I couldn’t believe how much he had grown. I had never been away from him that long and I wanted to gather him into my arms and just breathe him in. But the pain. Oh the pain. After just giving him a little hug and kiss I was out of breath and positively exhausted. 

My Mom helping me walk into the house! So glad to be home! (The thing tied around me is the gait belt you'll read about below) 

Titus was so excited I was home!

I missed that boy sooo much!!! Oooh that smile!!

I used my walker to get to the bottom of the stairs and then I looked up at my Mt. Everest. I couldn’t believe I had to climb those stairs. The stairs in our house are slippery wood, really steep and there are lots of them. I started out going slow and taking deep breaths after each one but the pain was worsening and I decided to just get it over with. So I charged (okay I didn’t charge but I turned my speed from turtle to… well I can’t think of a slightly faster animal..) up the last few and then straight to my big, cozy bed! Just the sight of the thing made me feel a bit less tired.

I was thrilled to be home but I was exhausted from the work of getting discharged, the long ride home, and then the trek up to my room so as soon as I was dressed in my favorite nightgown and tucked into my bed wrapped in fresh sheets and thick blankets I was asleep.

So happy to have my little family together again!!! 

I woke up to throbbing pain. I quickly realized this whole “home” business wasn’t as great as I remembered… I didn’t have the option of IV drugs or a nurse who kept me on schedule by bringing me my oral meds when they were due. Before I knew it, I was behind my pain and that thing was a steam engine that I couldn’t catch up to.

The next day I continued to battle the pain. It fought a really good fight. No matter what weapons I brought, nothing could conquer the pain. Then I started having crazy itching under the wafer, (see last blog, Carry On Baggage, for more details about the urostomy system) I tried to ignore it but it just got itchier every minute. I knew that meant I was allergic to the wafer that I had chosen. I had a slight melt down but thankfully I got a hold of the urostomy nurse and she ordered a bunch of samples of other kinds for me to try but she said they wouldn’t be here for a couple days. In the mean time she suggested that I cut off as much of the adhesive as we could without it falling off.

The problem was... That meant removing the one I had on. The urostomy nurse came to my room twice while I was in the hospital to give us instructions on the care of the system. Unfortunately, both times I was totally out of it but luckily my husband and my Mom were each at one. So I had to rely on their memories to care for it. 

One time when I was in the hospital there was moisture around my wafer so the night nurse decided we should just change it. She ripped the wafer off of my skin, grabbed a towel and wiped that thing like she was a shoe shiner! Oh it hurt so bad, I wriggled around in agony as she cleaned it up before putting a new one on. Despite the darkness of my room I caught a glimpse of my stoma and it was positively repulsive. It was the first time I saw it. I just cried. The nurse “comforted me” by telling me very factually that it looked like a pretty good stoma, it could have been a lot worse and that it was normal for me to have a negative reaction the first time I saw it. Helpful.

I made myself stop crying so she would leave my room and leave me to feel bad for myself alone. Then I cried some more, a lot more.

So when I was home and I knew we were going to need to change it I was terrified. The home care nurse was coming the next day so I convinced my Mom and husband that we should just wait until then so she could check it out before reapplying the wafer and bag.

The next morning the nurse arrived… She was a nun who barely spoke English. I should have been prepared for some pain. She started the process by prying the wafer off of my skin using alcohol wipes, which felt just about what you would imagine pouring alcohol into open wounds would feel like. Once she got the thing off of me my skin was bright red and angry, it had open irritation in some spots and was covered in welts. When my husband realized she had used the alcohol instead of the adhesive remover he took over and cut the wafer leaving just a tiny edge of adhesive on and then he wiped my poor, sad skin with the barrier wipes. I didn’t look. I just laid there covering my eyes while my husband and Sister Mary Clarence (that wasn’t her name but the only nun I know is from Sister Act…) tended to me. 

My husband was wonderful, while I laid there covering my eyes and holding my breath from the pain he told me it looked great and that it was getting smaller every day, he said it didn't bother him at all. I don't know how much of that is true but either way... It was exactly what I needed to hear. 

Once everything was reattached I quickly covered myself up and was happy to be done with it for the time being. However… Even with trimming off most of the adhesive my skin was still really irritated so when the package arrived with new samples the next day I knew I had to change it.

I decided I would try taking it off in the shower this time. It came off fairly easy but it was much harder to avert my eyes… When I finally peeled the sticky wafer off of my horribly irritated skin I accidently looked down.

Oh what a sight… My stomach was still really swollen from surgery so it made the stoma look like a tiny bright red hill inside a giant valley. The skin around it was covered in rashy welts. Worst of all… brace yourself… it was covered in thick mucus that looked like mayonnaise that had been sitting out in the sun… The smell was repulsive and I couldn’t stop gagging. I looked away and held my breath then I used the hand held shower head to clean my belly off but that just revealed my stoma- a huge, red, wrinkly wet piece of intestines outside of my body- straight from a horror movie. 

In between gags I verbally assaulted my poor abdomen until the frustration turned into a deep sadness and suddenly I was sobbing. My Mom, who was getting the new supplies all ready, came in when she heard me. She started crying too, feeling my pain just as I felt it, and she told me she couldn’t imagine how I was feeling.

After my Mom settled my sobs, like I settled Titus’- with love and understanding, I finished cleaning up in the shower while forcing myself to look away and then got out to get everything reconnected.

The new wafer worked perfectly on my skin and so far I haven’t had any issues with it. The stoma has continued to shrink a tiny bit each day and now I can look at it without much thought. It’s starting to become a part of me just like my stretch marks and sun spots that have shown up over the years. I don’t like them but I accept them. Every so often it burns and when we're changing everything I can see the edges of my skin around the stoma sometimes bleeds so I think it's the urine getting into the still healing skin that stings so badly. Overall... that side of the recovery gets better each day. 

The mucus still disgusts me. I hate when it gets stuck in my bag, clogging the drain and I have to force it out. It is from my illeal conduit, the illeal’s previous job was to help break down and move along solid waste so even though it’s been promoted it still producing the mucus and making my urine reek. 

It's also an interesting challenge each time I go to get dressed.. Aside from the family of birds that has taken up residence in the attic right above my closet, man I hate birds... I never know what is or isn't going to work with my urostomy bag. It's all trial and error at this point. I've nailed a couple outfits down but some are still in the discovery process, some things- like jeans- I haven't even tried yet, and some things just don't work! I thought I had a hard time finding cute comfy clothes before but now I have way more variables that I need to factor in every time I get dressed.. 

Anyway, the days went by and the recovery progressed at glacial speeds. I’m sure there were improvements happening each day but I was just generally miserable all the time. I had a bad case of “upstairs fever” a week after I got home. The stairs were daunting so I took my walks around the upstairs hall (still leaning heavily on my walker) 3 times a day but for the most part I was just in bed but I couldn’t take it much longer. So we made a plan... Operation Socialize Deni.

A good friend of ours gave us a cozy leather recliner and it wasn’t far from the bottom of the stairs so it was just the stairs that were the problem but I had to try it. So we tightened up the gait belt (a soft belt that went around me that someone held onto while I walked in case I started to fall) which my husband held onto with all his might (and the man has a lot of might) and my mom walked in front of me. It actually went pretty smoothly, I was down the stairs in no time. Then I used the walker and made my way to my recovery chair. I felt normal for the first time in 2 weeks! I couldn’t do anything except sit in the recliner but I didn’t care, just being downstairs and getting to be a part of the craziness was just bliss.

In the recliner and so happy to be downstairs! 

It was a gorgeous day so a few hours later we recruited my sister along with my normal team and my walker to help me get outside to eat dinner. I didn’t eat much and was exhausted pretty quickly but getting some sunshine and being able to be with my family was totally worth it! I felt like things were going really well for 2 weeks post-op and I was so encouraged and reassured that I made the right decision to have the surgery.

Outside enjoying a bit of sunshine with my sister and Cheetos finger Titus! 

Two days later, that all changed. One of the hardest parts of this recovery has been my intestines adjusting to their new arrangement without the bit the doctor recruited for my conduit. Just two days after surgery the diarrhea started and ever since I have bounced between constipation and diarrhea. Sometimes within minutes it will turn from one to the other. It’s a month later and I STILL haven’t found the right balance of stool softeners and laxatives that make it easy to go when I need to without going to the other extreme. The side effects from this piece of the recovery puzzle has been brutal. I won’t go into too much detail but I’m sure you can imagine…

I was sitting on the toilet after severe cramps told me to go there. I wasn’t sure what I was in for and wasn’t even really paying much attention when suddenly I felt a rush of fluid. It actually took me a few seconds to remember that I wasn’t supposed to be feeling anything like that anymore. I immediately stood up and freaked out when I saw blood pouring out of me, where my urethra was a few weeks before. 

I went back to bed and sat on a towel that was quickly drenched with a mix of fluid and blood. Each time anything came out pain rippled through my whole entire body. It was indescribable white hot pain. We called the doctor and they reassured us that some “discharge” was normal. We tried to let that reassure us but it didn’t. The next thing I knew I was vomiting and had a high fever. My home care nurse came out to visit me and my blood pressure was 85/55 and my pulse rate was faint, irregular and over 100 so she called the doctor and asked if they could get me in or if I should go to the ER. Thankfully he was able to squeeze me in… We found out I had a hematoma, which meant there was blood outside of the vessels (in the hospital I had a JP drain to get rid of the excess blood and fluid and they thought they got it all but clearly they didn’t). So the empty little tunnel that was left after they removed my urethra, which they had plugged up then stitched shut, ruptured. The combination of the pressure from the extra fluid, doing a bit too much (going outside and taking a short ride on the golf cart to visit our cows) and some unconscious straining during the bowel movement was too much for it.

Fortunately it wasn’t a major set back and although it was excruciating, there was nothing they could do. So we just had to wait and let my body heal itself.

My body shut down so it could focus on healing, I couldn’t stay awake for more than an hour or two for the next few days. Every so often I would wake up in a puddle of sweat and my fever would be gone but then before I knew it I would wake up shivering and it would be back up. Finally 3 days after that whole mess began things started to improve, although the pain in my pelvic floor was still staggering.

After that I stalled again. Except I was having the opposite problem... I couldn’t sleep- I had been on all the meds for so long they actually started having the opposite affect and kept me from getting good rest. The pain was constant and severe. I couldn't sit at all because the pain in my who-ha was so intense. I was still really unsteady so I couldn’t walk without the walker and someone close by and I could barely stand at all. I was dehydrated from vomiting, having diarrhea, and from just not eating or drinking because of my upset tummy. It felt like I was never going to get better. 

I was so tired and grouchy. I couldn’t deal with anyone. I didn’t want anyone to come visit me in my room- even my precious baby boy (one time he was in my bed watching a show with me when suddenly I started vomiting and I hung my head off the side of the bed so he wouldn’t see me throw up, there was no way I could deal with him taking on some of my pain) and I slept as much as I could. Yet I was also really lonely. I didn’t know what I wanted, just like I knew I was starving and had to eat but I couldn’t think of one single edible thing in the world that didn’t repulse me.

I know there were shimmery moments that distracted me from the pain and suffering for times here and there but for the most part I just went through the motions of trying to stay alive even though it would have been much easier to not. Don’t get me wrong, I wasn’t suicidal… I was just so incredibly discouraged. Every day I deeply regretted my decision to have the surgery but I didn’t dare let on.

Everyone was constantly going on about how brave and strong I was, what a great attitude I had, I was an inspiration… I really wasn’t. If there would have been a way out I would have taken it no questions asked.

People wanted to know how my IC pain was and they couldn’t stop telling me everything would be worth it when I was living my new normal life that would apparently be here before I knew it… I hated that. I had no idea, actually I still have no idea, which pain is temporary and just a part of my recovery and what will linger for months or years and frankly, I didn’t give a hot buttered biscuit about some future Deni that would be so thankful for all that the present Deni was going through. Future Deni is a jerk and past Deni is a whiner. I didn’t even know what I was talking about or who I was any more. I just had to keep going.

I was so frustrated with the way things were going, I was just done physically and emotionally but it wasn't going to get better on it's own. I had to take this recovery process on and in order to do that I knew I had to kick myself in the toosh and get to work. I wasn’t going to magically recover. This recovery required me to push myself and be uncomfortable. I had to do my physical therapy exercises, I had to walk, I had to make myself eat and DRINK, I had to go downstairs and be a part of the family again. I couldn’t use my “I can’t sit” excuse. So with some team work my family set up an air mattress that was easy to get in and out of downstairs and even though I was still laying down the majority of the time, it got me out of my “sick bed” and therefore my sick mentality.

Snuggled up in my nest downstairs!

I wasn’t sick anymore, I was recovering- two extremely different things that needed to be treated and thought of totally differently. The problem is, I've been in the chronically sick mindset for 15 years and I couldn't just switch gears in a day but I had to work on it. 

Just when things were starting to look up again the pain in my “urethra” continued to get worse and worse. One night I woke up to an intense stabbing pain and pressure. The pain took my breath away. I didn’t know what to do so I woke my husband (which I never do because he sleeps the sleep of the dead) and handed him a flash light and told him I needed him to look at my who-ha… In his still slightly comatose state he confirmed that there was definitely something down there, he said it looked like a bump and a stitch. Before I could ask another question he was back to sleep. I decided to do some investigating on my own and felt a hard lump, like a sharp rock, right at the entrance of my vagina. The pain continued to soar and no matter what meds I took I couldn’t even sit still with the stabbing pain. The only thing I could think of to do was take a shower… It’s been my go-to remedy for any pain for so long I couldn’t stop myself. It was then 3am and in my desperation I called my Mom who came up and helped me get in the shower and waited until the pain eased a bit then she helped me get back to bed. Eventually the combo of meds and exhaustion kicked in and I slept for a few hours.  

The next day I went back to my surgeon to make sure everything was okay… 

He said it was all swollen and irritated in my whole pelvic floor area and the bulge and stab I was feeling was where he stitched things up (it made sense once I remembered the vagina’s ceiling was the urethra's floor). He thought the trauma from the whole hematoma/ urethra rupture ordeal and excess swelling was causing extra pressure and therefore excess pain. He told me to get on a cycle of ibuprofen and keep up the good work…

I was so mad. All that for nothing. Every time I started to feel like I was maybe doing a bit better something dramatically horrible would happen. I just felt like it was never going to get better. I even posted on facebook that I was pretty much out of hope.

Thankfully my support system is fierce. Several people encouraged me in different ways but one letter from a dear, old friend was the first yank out of the pit of hopelessness and others took turns pulling until I was back to the surface.

Truthfully, I had been pretty lax when it came to keeping up on the ibuprofen and Tylenol, with my nausea it is always really hard to take oral meds at all much less when I didn’t think they were helping but I was desperate. So I decided to get myself on a schedule and actually the swelling went down which thankfully relieved a lot of the pressure pretty quickly. That, or it had nothing to do with the dumb medicine and it was just God giving me the break I desperately needed and so many were asking for on my behalf. 

Then finally last Monday, exactly 4 weeks after surgery I woke up with some pep in my step. Something felt different… The pain was still there but it didn't take my breath away. Over the weekend I had been able to get up and around more, I was eating a little bit more each day, and I was getting stronger so I could start doing things for myself.

I looked in the mirror and I saw myself! What a huge day that was for my recovery- mentally and physically!

That same day I started outpatient physical therapy and I came home so encouraged with my progress. Don’t get me wrong… it was pathetic… I lifted a hollow PVC pipe 10 times and my arms turned into noodles but it was progress. At that point I didn’t care… I just needed to know I was moving forward!

I was excruciatingly sore afterwards but I knew the old saying… No pain, no gain. She also gave me some things to work on at home, one of which I have been thinking about a lot. She wanted me to rub my belly. My incisions are crazy sensitive and the lightest touch feels like rubbing a fork on freshly sunburned skin but also I think years of chronic abdominal pain makes me very protective of my tummy. I need to teach my body that it’s not always going to hurt when anything touches me or when I move for that matter. 

Since then, I have continued to progress pretty quickly! Over the weekend I was able to enjoy some time with my family, get out and do some errands, enjoy a perfect summer day and I even got to cook a little bit! Last Thursday at physical therapy I rode the stationary recumbent bike for 3 minutes (so slow it didn't register that I was pedaling for a whole minute) and walked just part of the sidewalk then yesterday I biked for 8 minutes, reaching over a mile and then walked around the building (it's a pretty small building but that's twice as far as I was able to do just days before!) Granted... After physical therapy yesterday my limbs were so weak they actually gave out and I ended up falling but it's amazing that I have the stamina and strength to progress so quickly that I'm making things collapse! I've been chronically sick for 15 years, basically bed bound for 6 months and I had major surgery 5 weeks ago... I'm impressed if I do say so myself...

But best of all... As the days have gone by I have realized something miraculous... Every pain and every symptom of IC that I battled hard for 15 years is...

.....

....

(I'm building the anticipation..)

...

..

.

..

...

....

.....

Gone. 

It scares me to even type that... It feels like it's too good to be true but it really is the truth... It's gone! 

Don't get me wrong... I still have a lot of recovery pain- varying levels of pain deep inside, pulling and pinching here and there, my incisions are still super tender and sensitive, my whole pelvic floor is really inflamed and painful- I can only sit in certain positions and on certain chairs and even then I can't sit for long, my whole body is weak and easily exhausted and my digestive tract is still trying to figure out it’s new route. I'm still taking quite a lot of medication and will have to gradually reduce everything so my body doesn't have violent or dangerous withdrawals. Clearly I still have a long way to go, they don’t say 6 month recovery for nothing…

But... Come on! So exciting, right?! I mean I think so... Actually... I think I'm still in shock or in disbelief because I just feel anxiety and fear when I think about my IC being gone. I feel a glimmer of anticipation and possibility but so many times I have felt that only to be crushed pretty quickly... 

I don't know what pain and symptoms will gradually get better and what might take the whole 6 months to really improve and what might always hurt but the old stuff is no where to be seen and the recovery side of things improves a tiny bit each day! 

Reading this over again I am disappointed that I wasn’t able to get even close to describing the hell I lived in that month after surgery or the complicated emotions I have, and am still feeling. I wish I would have written some things when I was in the depths of it but as much as I love my blog and my readers... Documenting those horrors was the last thing on my mind! I have never been pushed harder emotionally or physically. 

But maybe it's good that I can't describe exactly how horrible it was because now I'm in a totally new phase. I have to switch my brain from chronic pain mode to recovery mode. Instead of figuring out new ways to maintain pain and symptoms, I have to find the balance between pushing to strengthen and grow without going too hard and setting myself back. I can't lose sight of all the work I have to do but I have to notice all the accomplishments that seem little at the time but add up to create a complete recovery. 

That's the biggest thing of all... I have to focus on my new, healthy life that is coming! Not just a recovery from this surgery but a recovery from interstitial cystitis. 

My Grandma , who’s 87, went through some major health issues right before all of my problems started unraveling in January. I made a bunch of freezer meals and stuck little notes of encouragements in with them. She and my Grandpa came over the other day to celebrate Father’s Day and she gave me a card and then said something like, “someone very special gave me something when I was getting ready to go through something scary and unknown” I knew what she was about to hand me and I started crying instantly. 

She handed me the stack of notes I had written for her. She specified that she wanted them back and I could just borrow them. I could barely talk about it because I knew I would lose it. Later, when I was alone and feeling strong I read them. If I can get through the rest of my recovery with ¼ as much courage, strength, dignity, and joy as my Grandma got through her battle then I would be blessed indeed. 

Here are a few of my favorites... 

“Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying ‘I will try again tomorrow!’” – Mary Anne Radmacher

“You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You must do the thing which you think you cannot do.”- Eleanor Roosevelt

“Every day may not be good but there is good in every day!” –Author Unknown

“Do not fear for I am with you, do not be afraid for I am God. I will strengthen you, I will help you, I will uphold you with my victorious right hand.” – Isaiah 41:10

I read those notes several times but the last few day's they've stayed safely tucked in an envelope in my nightstand. This battle isn't nearly over but I think I'm winning! Funny how I wrote those things to a woman that I knew was stronger than she thought she was… Makes me wonder…

Anyway, I’m on the road to recovery! I think I’ve finally gone over the last hurdle and I’m hoping it’s smooth sailing from here on out! I will keep up my physical therapy twice a week, counseling once a week to help me through this huge life adjustment, and every day I will continue to push myself to be the best version of myself in each stage of this recovery. 

Another little thing I want to share with you all... Our little family has been waiting for a long time to get a puppy. It's been a dream my husband and I have both had but it seemed pretty unattainable over the last few years as my IC declined. My Mother-in-law breeds Golden Retrievers and each litter we would visit them and resist the temptation to smuggle one home in the diaper bag but it was never the right time for our family. 

But the first thing I remember my husband saying to me when I woke up was that his Mom's dog had her puppies while I was in surgery. That couldn't be a coincidence! So between that "sign", our sons complete adoration for dogs, and my amazing recovery progress we decided that now is the time. We all met and fell in love with one little pup in particular and she has our hearts already! We still have 3 weeks until she can come home but the planning and anticipation is almost as exciting! 

I know this might seem crazy to get a dog right when I'm starting to recover but I think having her will push me even more. She is pure love and joy, she brings us all together, and will force me to walk and get outside. 

More than that, she will be a part of the new life that is fast approaching that I never dared to dream I could have. She is a furry, happy, potentially destructive symbol of our new life that I fought so hard for! 

So dear readers, please meet the sweet addition to our family, Maja! (pronounced like Maya) Since she was born and I had this life changing surgery in May and my husband (and obviously our son) is Croatian we thought the name that means May in Croatian would be perfect! 

Does it get ANY more precious than this?!? Come on.... 

Me and my girl! It's about time there's another girl in the family! 

My husband just adores her already! 

A sample of what her life will be like! 

 Who knows the adventures the 4 of us will have!! I can't wait to really begin this life. I hope to never take a single moment for granted! 

DISCLAIMER: I am super excited about all the potential my post-op, post-recovery life has for me but I want to really stress the monstrosity of this whole thing. I did not make this decision lightly and it was 100 times worse than I could have imagined... and that's with my surgery going perfectly and having very few complications in the big scheme of things! So those of you with IC please don't see this as an easy out... It's not easy and it's not an out. I will never live a normal life and I will always struggle in some ways because my body is now not how God intended it to be. I battled IC for 15 years and it wasn't until my bladder was in total retention and stopped functioning that I even began considering this. Please get opinions from at least 2 doctors and thoroughly talk about your options, potential risks and side effect before you even start thinking about this.  

Carry On Baggage

Each day of my recovery has a new challenge and different pain that is center stage but I know eventually all of those things will start to get better until one day I am finally recovered. The difference between this surgery and others, the journey doesn’t stop there. 

This blog is a short explanation of my whole urostomy system- what it is, how it works, and how to care for it. I think I have glazed over this subject in the past so I get a lot of questions about it and as usual I thought I would just write a blog to answer some of the questions! I will warn you… the pictures are graphic. Before I had surgery I saw a couple pictures of stoma’s and was disgusted. Then the first couple times I saw mine I sobbed. Truthly, it looks a lot better than it did 3 weeks ago but still, if you are easily grossed out I would maybe skip this blog! Don’t say I didn’t warn you…

You can’t just remove a persons bladder and move on… you need a new way for your body to rid itself of the urine that your kidneys are busy making all day long. There are a few different ways of handling it and for me we went the direction of the illeal conduit. So they took out a piece of my small intestines and made it into an extension cord by connecting my ureters to one end and then pulling the other end out my lower abdomen, just a couple inches to right of my belly button, creating a stoma. So now that's where my urine comes out!  The problem is it has no sphincter or valve of any kind to regulate when the urine comes out. So that thing just does as it pleases…

There it it. My stoma. It's suppose to stick out like that, sends the pee forward and helps create a a good seal on the wafer.

You can see where the stoma is on my abdomen and the size, about the same as a quarter. You can also see my "pirate scar", the incision they used to remove my bladder. Apparently he did it like that so he wouldn't have to cut through as many muscles but I think it looks awesome! Arrrr!

My tummy's new look... 6 incisions and my stoma. 

I thought it would be a constant tiny trickle of urine but it actually has little spurts randomly, more or less often depending on how much fluid I’m drinking. So of course you couldn’t just leave that to empty, you would have a huge mess. So the 2014 solution (apparently it changes regularly) is an adhesive that goes around the stoma, called a wafer, that has a little plastic ring that a bag clips right onto. Just like Tupperware. I like to keep my pee nice and fresh…

There it is with just the wafer on. (I could  not for the life of me figure out how to turn this picture so just tilt your head!)

On a day to day basis I would just have the bag, which is just a bit bigger than a sandwich size Ziploc bag. It has a little valve at the bottom that I would keep shut and then just open when I need to empty it. Again depending on how much I’m drinking, I would empty it about every hour or so.

Closed! 

However, right now as I recover I'm in bed most of the time so I have it attached to a bed bag that holds way more urine. I just plug a tube into the bottom of my bag and open the valve and it just drains directly into the big bag. Later on I will just have it attached to the bed bag at night.

Attached to the bed bag!

It took me a while to find the right wafer, there are so many out there with all kinds of adhesive but once I found the one I have now it's all working great! I am still getting adjusted to the whole thing and my skin is still really tender so I’ve been changing the whole thing every 3 days but eventually I can keep the wafer on up to 7 days and just change my bag 2 times a week.

The whole process of changing the whole system was really overwhelming at first! No matter the amount of instruction we had from the urostomy specialty nurse and directions and diagrams we read my Mom and I were still really unprepared when we did the first change at home. I was in the shower and impulsively decided to remove it. With no experience and little preparation it was quiet the experience… But now we’ve got it down to like a 5 minute thing and I’m sure we will continue to get better at it until I can do it on my own and it just becomes a part of my routine.

There are two ways of removing my wafer: either with adhesive removal wipes or in the shower. If I do it with the adhesive removers then I have to use wound cleaner and gauze to clean the area really well so it’s kind of more work in some ways and I don’t feel as clean. So I prefer to take a shower and remove it then use the hand held sprayer to get all of the gunk off. You see… using some super complicated scientific solution reactor device (I’m just using impressive sounding words to make it sound like I know what I’m talking about) the wafer swells and creates this foam seal around the stoma to protect it from any excess urine that isn’t draining into the bag. Lately, since I’ve been laying down so much, the urine sits around the stoma for a while until it drains into the bag which means I have a lot of that weird goopy stuff. Once I’m up and around more it would just drain down and I’m hoping that will mean less of that business. 

So anyway… I remove the wafer and bag then clean my stoma and the area around it. It continuously drips urine so a nurse advised me to hold a tampon on the opening that the urine comes out of while I clean around it and then get things into place! It works great!

Handy tampon trick! 

Then I wipe the skin with a wipe that has some solution that creates kind of a barrier which protects my skin from the wafer. Meanwhile my mom or Zach, whoever is helping me, has measured my stoma with a paper template (it continues to get smaller and smaller until about 6 weeks post op so we have to measure everytime) and then cuts the hole in the wafer to be the perfect size to fit around my stoma. Eventually it will settle into the size it will always be and then I can order pre-cut wafers so we can skip this step. 

Then we just put the wafer onto my skin around my stoma! I press along the edges to make sure the adhesive is secure then I clip the bag into place and that’s it! What once, just 2 weeks ago, seemed like such a huge, overwhelming project is now a really simple and quick job!

This is how it looks all complete! I can put the bag any direction but have found it works best at an angle while laying down. (Couldn't figure out how to turn the picture again...)

I haven't gone any where yet and have only worn "normal" clothes a couple times so I am still trying to figure out that side of things. I've worn pregnancy bands a couple times which hide it really well and my friend sewed a pocket into one for the bag to go but I haven't tried that yet. So there's definitely a learning curve and it's been all about seeing a problem and finding creative ways to make it work! Overall I think this side of things has been going really well and it's definitely not as challenging and life changing as I thought it was going to be! 

I am breaking this whole recovery into several blogs because it’s overwhelming to think about writing everything and I’m really still deep in the physical (and emotional) recovery so there’s lots more to come but I’ve been getting a lot of questions about this so I thought I would summarize this real quick and show some pictures to help people understand. More to come real soon!

Terrified.

If this was decades ago I would have crumbled up pieces of typewriter paper in and around a trash can nearby. I have started, rewritten, and completed this blog so many times but it’s never right. So I do the 21^st century version of angrily crumpling papers and chucking it towards the trash, I start a new document. White screen, blinking line that always intimidates me all ready and waiting for my fingers to tell you all what’s going on in my head and heart.

The problem is… I don’t even know what that is.

Two months ago I was forced to make a huge decision. Continue fighting interstitial cystitis, the horrible disease that has robbed me of so much over the last (almost) 15 years or give in to it by getting my bladder and urethra removed.

It took a lot, actually it took everything I had, to make the decision. I talked about it over and over with everyone I knew (some that I had met minutes before I laid this decision on them), I thought about it constantly, I made lists, I talked to multiple doctors and specialists, and I constantly prayed for guidance.

Finally I made the decision. After a grueling, miserable season of life that I hope one day will be a foggy memory I decided that I had to have this surgery. For the chance to live my life, I had no other choice.

So I wrote the blog entitled, New Beginnings and I declared to all, that I chose to move forward with the decision to have this life changing surgery.

At that time I was fragile and vulnerable, I put it all out there but I wasn’t sure what response or support I was going to get from my family, my friends, and my fellow IC sufferers. I wrote that blog in the way that I did for all of them but really it was mainly for me. I HAD to be positive. I had to think of the surgery as this huge opportunity to get a life that I never dared to dream was possible for me.
 

Since then that blog has climbed up to my #2 most read blog and continues to be read daily. I have received nothing but support from everyone, not one single person had a negative thing to say. I am blown away and so thankful for all the compassion and kindness my dear readers showed me.

But I have a slight problem… I’m not sure I was 100% accurate in that blog, accurate might be the wrong word… I was telling the truth and I do hope all those things come true but I definitely glazed over some of the hard sides of this surgery… Again, I think that was more for me than anyone else.

As I went through the motions that followed my decision to go forward with the surgery I kept everything light and positive, I went into each appointment with hope and anticipation. When I talked to people I excitably explained the surgery and told anyone who would listen about my “well list” that my husband and I have started that is full of all the things I/ we want to do after I’m recovered from surgery and when I’m healthy and pain free. I also proudly announced each day how many days were left until the big day while crossing days off the calendar as a nightly ceremony.

I did so well at being positive that I think I actually fooled myself. All along I knew that there were lots of risks that went along with the surgery and as I made this decision I considered all the risks as just that. One word. “Risks”. That was on the con side of my pro/con list. I didn’t even go into detail with myself, I just lumped up all the horrible things that could go wrong in one tiny word. So of course when I listed all the millions of potential pro’s, that one little word didn’t stand a chance of making a difference in my decision. I covered that one little word up with dozens of outings and feats that I could never do with my diseased bladder.  

Then last week I had my pre-op appointments. The whole thing was big… The city, the parking garage, the hospital, the waiting room, the exam rooms, the blood lab. It was kind of a wake up call.

Before my appointment I sat in the waiting room surrounded by bald cancer patients in soft, ill fitting beanies. One guy had wires coming out of his skull. Their loved ones surrounded them like determined guards around a fortress. The patients themselves just looked drained and like they only had a few drips of life left in them.

I wondered what I was doing in a room, even in a building, with these poor sick people. After all, I’m just a healthy young woman with a bad bladder, I’m not fighting for my life. Or at least that’s what I made myself think.

My appointments went well and left me with had a big blue permanent marker dot just about 2 inches to the right of my belly button where my stoma will be. Then I went to the lab and I spelled my name and told my birth date 6 times to 3 different people who crossed checked it to the stickers on the vials, my wrist band, and my chart before they drew my blood. Then they did that exact thing all over again and drew more blood from my other arm. This was all to verify that they were 100% sure that they knew my correct blood type.

They also gave me papers to fill out in order to make someone my power of attorney, a living will, and make a decision about the whole DNR (do not resuscitate) thing.

I was exhausted after all this and collapsed in bed when we finally got home but I had an uneasiness that I only get when something uncomfortable is trying to come out that I have forcefully shoved down where I wouldn’t have to think about it.  

For a few days after that I kept my mind busy making lists and planning as many minuscule details as I could from the comfort of my bed but then finally all my lists were made and as time went by and with my wonderful family’s help, we crossed everything off my absurd lists. (Everything except get Titus a sprinkler. I have this irrational fear that it’s going to suddenly be 100 degrees while I’m in the hospital and he won’t have a sprinkler to play in. Yes I realize he can just play in the hose or even an old school garden sprinkler like I played in, I also realize we live in the suburbs of Seattle which is not exactly known for its tropical weather and last but not least I also realize that my parents, my husband, and whoever else is caring for Titus while I’m in the hospital will regulate his temperature in a fun way and can even go and buy a festive sprinkler on their own. But, I still want to get my kid a dang sprinkler if you don’t mind.)

The X’s on my calendar grew closer to my circled surgery day and finally I couldn’t suppress any of it any more.

The box that I had shoved all my fears and all the possible complications and risks into popped like a giant Jack in the Box. Suddenly I was terrified.

I was so busy making others and myself accept that I am going through with this surgery that I think I was minimizing it and not acknowledging the hugeness of it and suddenly my body was flooded with dread and fear.

I KNOW that my bladder has stopped functioning and never will on its own again. I KNOW that the pain caused by my bladder is debilitating and robbing me of everything resembling a life. I KNOW that I cannot live with any form of catheter for much longer. I KNOW that I have tried everything out there to treat my IC. I KNOW I have spent the last 6 months in bed 90% of the time. I KNOW that I cannot continue getting infections. I KNOW I vomit regularly from the pain and medications. I KNOW that I passed out the other day from all of this. I KNOW I haven’t been able to be home alone with my son in almost a year. 

I know all that. I know I’m sick, very sick. Yet I just feel like Deni. Not Deni, the girl with IC or Deni, the sick girl. Just Deni. Obnoxiously cheerful, slightly air headed at times, fun loving, goofy, sarcastic, family oriented, afraid of birds, worm and bug loving, attention seeking, sweet natured girl.

So it’s very confusing to me that I would be going through something next to people who are fighting for their lives…

The last time I saw him my surgeon said to me “technically this isn’t life or death for you but this surgery could save your life.” I thought that was a nice sentiment at the time but since the weight of this surgery finally hit me that has been a helpful reminder. IC isn’t fatal. I won’t die from it. But what kind of life am I living with it?

I get all that. I know all the good, positive reasons to have this surgery… Just read my blog New Beginning, it’s chock (or is it chalk, I really don’t know) full of great reasons to go through with it!  

Yet… I am still utterly terrified. This is my 30^th surgery and I never get scared anymore, I think of them as annoyances like a trip to the DMV but this time is so different for some reason.

I have written in my blogs before about my need to belittle my disease and I have been catching myself doing that with this surgery as well. When I do so to anyone, or even myself, I have started listing in my head the things that are going to happen in this surgery… They will make multiple incisions for the surgeon operated robot to access my innards, they will remove my bladder and urethra, pull the illeal section of my small intestines out of my body then chop about a foot of that out then sew it back together, they will put that small piece of intestines in a different spot and hook my ureters up to it, then pull that other end of that out of a hole in my abdomen, fold it down like a turtleneck and stitch that in place to create the stoma, run a stint from my kidneys and out that stoma to make sure the urine can drain no matter any swelling, stitch up where my the urethra used to be, tuck everything back, and close all the incisions leaving it as close to how God designed me as they can after the modifications.

I may be even leaving some things out but those are the major things… Those are the things that make me remember that this isn’t removing my tonsils. This is removing an important organ and reconstructing bits of me to do things that they were never meant to do. This is going to hurt. This is serious. This is big.

I know that worrying does nothing, in fact multiple times in the Bible we are reminded to not worry. I KNOW that. I can’t help it though… All I have left to do is sit here and worry…

Worry about each incision they are going to make, each step of the surgery, what could go wrong, how long I’ll be in the hospital, Titus’ care while I’m there, missing Titus, Titus missing me, having uncontrolled nausea and vomiting, missing the premier of the Bachelorette, spending my birthday (2 days after surgery) in the hospital, the cost of parking for my visitors at the hospital, Titus not having a sprinkler… and so on and so on.

My mind is like a tiny windmill blowing constantly. (Unfortunately it’s not always blowing the smartest things… Frequently quite dumb things are blown out! (PLEASE tell me I’m not the only one that gets confused my South America and the “South” that’s IN America?))

So I realized that I am sitting here scared and worried, not just going on an emotional roller coaster but the whole emotional fair (there’s the emotional fun house, the emotional cotton candy, the emotion farris wheel…) and yet when I posted my blog declaring that I was going to have this surgery I mainly only talked about the good! I glorified it and put all my hope, all my life, in this one surgery.

Since then I have adjusted and accepted things a bit more and I can talk about the negativities without having a mental break down, sort of… But I realized I still hadn’t clarified the risks, the magnitude and the life changing part of the surgery to my readers.

So I think I should clarify a few things.  

First of all let me just say, this is by no means a “cure” for IC. Technically I won’t have a bladder or urethra so therefore a lot of the pain and symptoms that IC gives will be gone but as those of us with IC know, it extends itself beyond the walls of the bladder and urethra. I may still have nerve pain, pelvic floor dysfunction and pain, and I may even have phantom pain just like an amputee sometimes has. I also may still have muscle pain and weakness and other issues that come from my body feeling like it needs to protect itself from the pain for the last 15 years.

Also, after consulting with my doctor I decided to go the path of the “Illeal Conduit” or “Urostomy”. So it’s not like after I recover from surgery I will be a normal person who can just pee without pain. I will have a piece of intestines outside of my body.Then I will have adhesive around my stoma 24/7 for the rest of my life that a bag will clip onto. Then the bag will hang from my low abdomen and fill with pee as quickly as my kidneys makes it. I will have to empty the bag every 1 to 2 hours depending on how much fluid I’m drinking. I have to change my bag every 3 days. I have to make sure that nothing is leaking and that the skin around my stoma is staying dry and clean. I have to be very careful lifting for fear of a hernia around the stoma area. I have to drink tons of water so that my kidneys have an easy time (which is the opposite of what I've done the last 15 years with my "less drink, less tink" theory). So on and so on… Plus there’s probably several more ways this will impact the rest of my life that I don’t even know yet.

However I will say… From what I have heard so far the hardest part is going to be the whole lifting thing. Don’t get me wrong… I’m not exactly at the gym bench pressing but it’s the little things that I used to take for granted  that will be the hardest I’m sure… For the first month after surgery I can’t even lift a gallon of milk, then for the duration of my recovery I can lift up to 10lbs or so, after I am pretty much recovered I can only lift around 20lbs or whatever I can lift without straining. So that means after this surgery… I will most likely never be able to pick up my child ever again.

Let me just say that again.

I have 3 days, 22 hours, 40 minutes and 41 seconds of lifting my child left then potentially never again. Not when he gets an owie, not after his first Christmas program, not when he’s scared, not when he’s tired, not to get him in or out of the car. Never. I can sit on the floor or in a chair and have him climb into my lap or he can lie beside me but I can’t pick him up. Ever again.

I’m sure I’ll hear 1,000 more rules and limitations but so far that’s the one that burns down deep where only things involving your child burns.

So things like that and any other unknown ways I will be limited the rest of my life scare me so much. I have no control, I just have to see how things go then I have to listen to all the rules they tell me in order to heal the best I can.

Then there’s all the risks… Oi. The risks. Even though I’m doing much better at accepting how serious this surgery is I still don’t like to think about this part but you know me… I’m here to share. The doctor said that the risk of complications is like 50% with this particular surgery. Things like infections, imbalances from the urine going through the intestines, issues with the urostomy equimpment including leaking and skin irritation, bowel changes and issues, kidney problems, troubles with the stoma, and so much more… Maybe I’m just saying this to make myself feel better but every surgery has risks and considering I’m so young and healthy in the ways that matter I’m sure everything will go just fine! Yeah! Just fine! 

Aside from all that I am terrified of the pain. I have dealt with high levels of pain constantly for almost 15 years but all that stuff… The taking out, reconstructing, sewing up, patching back up… That scares me. That sounds real painful. I have had 29 surgeries before this one and I have never been scared like I am now… And I still have a few more days left...

I’m not really scared of the actual surgery… It’s more everything that will happen after waking up. Or potentially not waking up. Well, I’m not really worried about that but I will say signing a paper that authorizes my husband to make any medical decisions for me if I am unable (you read it here…. I DO want to be resuscitated and I want him to think long and hard before any plugs are pulled. (Joking… ha ha ha, just trying to lighten things up…)) and, as I mentioned earlier, all the verifying my blood type so they have the correct kind on hand just in case makes this all pretty heavy.

This is big time.

This isn’t a little in and out, doctor don’t waste your time tying the back of your mask kind of surgery. This is 5-6 hours of me lying on a flat table full of drugs to keep me in a perfect balance of deep asleep yet alive, with inside bits outside and outside things inside, removing, reconstructing, surrounded by qualified medical staff chatting about their good golf games while holding a piece of my innards in their hands.

Some of them might not even know my name, or that I’m a wife to a guy that really likes me in yoga pants, a Mom to a boy that can’t sit next to me without touching me, a daughter to parents that would still be proud of an out of the lines colored picture, or sister to siblings that think I’m hilarious,  an aunt to nieces and nephews that think I’m cool even if they’re too cool to admit it, an IC sufferers that shares her journey which others admire for her bravery and vulnerability, and so on…  

I’m bringing a big bag of candy for all the surgery staff,  I’m going to introduce myself to as many of them as I can before I’m fast asleep, I’m going to try to make them see me as a person… A healthy, vibrant, durable person that is just desperate for her life.

So yeah. I’m scared. I don’t really want to talk about it anymore. I have made my decision and I have no regrets but you guys… I’m so scared! 

That’s all I can really say right now because my computer screen is suddenly really blurry. Oh wait. That’s my tears in my eyes.

I am having this surgery because I have literally exhausted every other IC treatment, I have very little quality of life from my totally dysfunctional bladder and all the pain, and I am just desperate for some form of a normal life.

It’s a case by case thing and I’m sure each doctor is different just like each patient is. I’ve heard of some IC patients having great success and going on to live a normal life after this surgery and I’ve heard of people who have struggled after surgery as well. This is the furthest thing from the ideal solution to IC and not an easy fix whatsoever.

I promise I will continue to document my journey as honestly and as frequently as I can. I’m not here to promote cystectomy’s for IC, in fact if there was any way I could NOT do this surgery I wouldn’t even consider it. February of last year my husband actually brought this up to me and I waved him away like a pesky fly. It wasn’t until my bladder had fully stopped functioning and the pain was unbearable without narcotics that I even started considering this and even that was after my doctor brought it up to me.

I know that those of you who are in the trenches, fighting your IC war might think this sounds ideal but trust me… It’s not. There are so many things out there that are better than this. Things that won’t require you to go through all that I am about to in the surgery and then for the rest of my life… Please don’t give up!!

As for my family and friends who are in my fox hole with me right now, fighting my IC war with me. Thank you. I couldn’t do this without you. Thanks for letting me tell myself this will be awesome when I need to and letting me freak out about the magnitude of this when I need to. Thanks for all the help with Titus and the delicious meals for my family while I’m recovering for the next few months. Most of all, thank you for loving me in my imperfect, brokenness and for praying for me daily. I guarantee I couldn’t do this without you.

Especially thanks to my amazing husband and my parents who aren't just with me but they bear my burden with me. Also thanks to a special new friend, you know who you are, for always being there for me in the ways that count by just letting me vent when I need but then telling me to shut up and accept that this is huge. 

I will have my husband post updates on my facebook after surgery from time to time and I will try to write as soon as I can but please whisper a quick prayer or just say my name any time you think of me. God knows our plea and how much we long for this to work and he told us to ask so here we are... Asking him to use this surgery to answer the prayers we have all been praying for 15 years. 

(One more thing... I am battling yet another bladder infection and so far the antibiotics having been working the way they should be and I NEED this infection under control by Monday but I would really love for it to be gone sooner so I can enjoy some time with my family before this huge journey begins! So if you'd like to pray for something specific right now that would be it! Pray for the antibiotics to work quickly and for the infection to not even start reaching my kidneys!)

My boy and me on Mother's Day! I'm soaking him up, in all his filty, sweaty, sticky, sweet toddler boy glory!