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...