The Saga of the Mysterious Abdominal Pain Never Ends (Part 4 - August 2024)

If you've missed any parts of this saga, you can catch up with the links below:

Part 1 (April & May)

Part 2 (June)

Plus   (Baby's First Coloscopy)

We're still in a holding pattern, of sorts, and it's really starting to get to me, guys. Every day, I wake up thinking Today is going to be a good day... we're going to do everything we're supposed to do, we're gonna stay on our schedule, and nothing is going to be weird or abnormal. And then something happens and the schedule goes out the window. I'm a creature of habit. I like knowing that on Monday, I'm going to take him to work, go to the gym, come home and shower, work from home, pick him up, make dinner, go to bed. But if he doesn't go to work, we sleep in, so I don't go to the gym, so I don't get my shower, and then I shower before I go to bed. Part of it is me, I know that... I know that I can still get out of bed and go to the gym, but I have no willpower; the minute that something different happens, I use it as an excuse to not do things. I hate this about me, and I complain about it a lot, but I never get around to actually fixing this problem.... 

Sigh...

So, on August 1st he expected to wake up and go to work, but when he stood up out of bed, he said that he felt extremely dizzy and lightheaded. This carried over for the next few days as well. He was feeling better and went back to work on August 8th and did a full week with no issues. 

He had another round of labs on August 12th, and we were ready for his MRE on August 14th, but it got cancelled because Blue Cross Blue Shield hadn't approved it yet. We also had a follow up with Dr. L who said that he was stable and that he should keep on tracking his blood pressure and watch what he eats. 

On August 15th, he had his Peeper View (Cystoscopy) and a prostate exam. Bless his heart, the Urologist wasn't all that... gentle... with the exam! I left the room and hung out in the hallway, and within seconds I heard a weird combo of "oof!" and "oh!" and then the doc was out of the room and I went back in, trying not to giggle. Hubby had never experienced a digital exam before, so he was grossed out with the lube and the finger and the whole thing and me - a vagina haver - was like, what's the big deal?

Anyway, the nurse came back and to clean and prep his peeper, then the doctor squeezed some numbing gel into hubby's urethra. At the same time, the nurse uncovered the Cystoscope, and my god... Hubby's eyes about popped out of his head! He said later that it looked like an immersion blender. 

This looks like a creepy mechanical iguana, lol

The cystoscope has a little light and camera at the end, and it's connected to a TV so that the doctor can see what's happening, and I got to see the entire thing. I won't lie, it was cool as hell! Hubs wasn't as impressed, and he was uncomfortable, and let out a few sharp oofs at one point. We saw a (benign) polyp in his urethra, and the entire bladder. They used the cystoscope to inflate the bladder with water to stretch it and make reviewing the tissue easier. I didn't time it, but I'd say that the entire process from numbing to retraction was maybe 5 minutes? Once done, they left him to clean up and empty his bladder in the bathroom nearby. 

As expected (and I'm so frustrated by all of this), he didn't see anything. Maybe a redness that could be a result of a past infection or problem. He wrote an order for a FISH Test (Fluorescence in situ Hybridization) which is a test that can detect genetic abnormalities associated with cancer. FISH testing may be more reliable for looking for abnormal cells, and may detect bladder cancer up to 6 months earlier than other methods. Interestingly, on the lab order, they have Hubby diagnoses as Chronic Kidney Disease Level 2 - not even Dr. L has given us any official diagnosis. 

As he feared, but fully expected, he woke up the next day with LLQ pain again. Most likely all of the ab-clenching and tensing up during the Peeper View triggered another bout of pain and he missed an entire week of work. 

On August 22, he felt ready to go back to work, but he was waylaid by gastrointestinal issues (like three poop stops in an hour type of issue) that stuck around for multiple days. He stayed home again, and because he had to fill out some official paperwork with Home Office that took absolutely forever (!), he didn't go back to work until after Labor Day! 

On August 27, we had a full schedule. First up was an MRE (Magnetic Resonance Enterography), a special type of MRI that uses contrast material to produce detailed images of the small intestine. It's often used to evaluate for things like Crohn's Disease. When we got to the medical plaza, we were called back and he was given four containers of VoLumen (20oz each, I think) that he was supposed to drink within an hour! While I was paying attention to the nurse and what he was saying, I could see Hubby next to me mentally withdrawing and already shutting down inside of his head... I can't drink that, there's no way, I quit, let's go home... those kinds of thoughts. I asked the nurse what would happen if he didn't drink enough, and was told, point-blank, that the MRE would be cancelled, we'd need to reschedule, and he'd have to drink again. So, I made Hubby put on his Big Boy Pants and drink. 

It tasted like flat room-temperature Sprite, which was weird. He got through the first bottle in 20 minutes, and most of the second bottle in the next 30 minutes. (If you can math, that means he's way behind schedule, and things aren't looking all that good). The nurse called us back again so that he could change in to scrubs. He said that Hubby needed to at least drink three bottles or it was a no-go. So Hubby continued to chug while he changed. The nurse also asked if I wanted to be in the room with him while he had the MRE (I didn't think that was an option), so I needed to put on scrubs too. Both of us had to be 100% naked under the gowns (plus those fun grippy socks), with no jewelry, hair clips, glasses, etc. The rest of our stuff got shoved into a locking drawer and the nurse held on to the key. By the time he got to the MRE machine, he was full of 2 3/4 bottles of VoLumen (much less than he should be, but he got the go-ahead from the nurse, so...)

Inside the MRI suite, he went in feet first with his hands above his head sticking out of the machine. They gave him a button to push in case he needed to tap out, and both of us got earplugs because the machine is very loud (especially inside the machine). Some machines allows for music inside, but this one didn't have that feature, so he was just in a Pringles can with his own thoughts. I was able to stand next to the machine and hold his hands, and at first, I was just giving him some gentle "I'm here for you" squeezes. For many of the scans, he was required to hold his breath for anywhere from 8-19 seconds, so we worked out a system that I'd squeeze at the halfway mark (4-9 seconds) and double-squeeze when it was over. This seemed to calm him down well, and after about a half-hour, he was done with all the scans. We changed back into our real clothes and headed home. He was still full of VoLumen, so he didn't really want lunch. 

After lunch, we had our last follow-up with Dr. K (the virtual doc); she felt like Hubby was in good hands with Dr. L and ARNP LeBlanc, and asked that we just check in with her every once in a while to let her know how he's doing, especially if (when) we get a true diagnosis and a reason for the diagnosis. But until then, we were done with her; no follow-up appointments in the future. 

We had a few hours to relax but then we had to go out again, this time for his Wellness visit with ARNP LeBlanc. This was more of a routine doctor's visit, not specifically for his pain or kidneys. She suggested that Hubby have his lipids checked for high cholesterol, but other than that, she was fine with what Dr. L was doing, and sent us home with no additional info or follow-up appointments. 

So at this point, he's still on leave, but that's because Home Office sucks, not because he's not feeling well. Here's hoping that he can get back to work soon and we can put all this pain and poop and dizziness behind us and get back to real life. 

The Saga of the Mysterious Abdominal Pain (Part 1)

Last year, if you recall, Hubby had an appendectomy. They did it laparoscopically, going in from three places: his belly button, his FUPA crease under his belly button, and the left side of his lower abdomen (the appendix is located on the right side of the body). Surgeon told us later that this was an easier way to do it, instead of cutting him open all the way. 

Fast forward to mid-April (after we got back from vacation, actually), when he told me that he’d been having some abdominal pain on the left side for the past few days. He wondered if it was related to his surgery. By April 18, he was in increasing pain, kind of like waves, where I’d see him tense up his whole body to deal with the pain. He’s never been a “go to the doctor” kind of guy, but I was able to talk him in to seeing a virtual doctor, via Doctor on Demand, which is covered by his health insurance. We spoke to Dr. K and after hearing all of his symptoms, she suggested that he might have Diverticulitis – this is when there are little pockets in your intestine that become inflamed or irritated. (Diverticulosis is when you have them, Diverticula are the names for the pocket, and Diverticulitis is when they’re angry). She suggested that he eat a low-fiber, easy-to-digest diet (to give the intestines a chance to heal), and follow up in a week. 

At the April 24th follow-up, he reported that the pain levels were about the same, about a 4-5 on a scale of 10 (seriously?) Because of this, Dr. K suggested that he get some lab work done, as well as a urinalysis (UA), continue the diet, and follow up again in another week. We got the lab work and UA done at a local Walgreens, and the results showed red blood cells and high protein levels (3+) I his urine. Dr. K called us when she got the results and posited that a kidney stone might be the culprit (even though kidney stones usually cause pain in the back). She referred him for a kidney ultrasound, as well as a colonoscopy (because he’s due for his first one, not because of the pain). She also wrote him a prescription for blood pressure meds, because his blood pressure was way too high, hitting Hypertension 1 or 2 levels. The plan was to have him pick up his new meds after work when he went back – he’d been taking a leave of absence at this point, because of the pain and all the doctor stuff. 

He was set to return to work on May 2nd, but he couldn’t sleep overnight (May 1st into May 2nd)… Nothing unusual, this has happened in the past; he would just take an extra day off and get back to normal the next night. Not this time! He was suffering some serious insomnia that I’ve never seen before. We’d watch TV in bed for two hours or so (up until about 10pm, normal bedtime for us), and he’d fall asleep until midnight and then just… be awake the rest of the night until the alarm went off at 6:30am. This went on for a few days (with him missing more and more days of work), with him getting more and more frustrated – which, in turn, made the insomnia worse. We tried Unisom. We tried Tylenol PM. Finally, I had to be “The Bitch” and I took away his soda after 2pm (I mean, come on… he was complaining about his insomnia while drinking Mtn Dew in bed…). I had to gather all of my Inner Peace Hippie language and tell him that things would work out, would be okay, it’s nothing to worry about, blah blah blah (basically “talk him down” and get him out of his head). I made the suggestion that, when the insomnia happens, he should get out of bed, go sit on the couch and read until he felt sleepy again. When he felt sleepy, just let it happen, and just sleep on the couch. This did work, and for a few days, I’d go wake him up to see if he was going to go to work (never did), then lead him back to bed where he’d sleep again until 9:30 or so. Every morning, he was like a zombie. 

During this time of insomnia, on May 4th, his Ultrasound was negative for anything. No stones found. No kidney abnormalities found. There is a possibility that a stone was there and it had passed painlessly. Dr. K suggested that he do a second UA at the end of the month before the next virtual appointment. The following day, I finally had a chance to pick up his blood pressure meds (yes, almost 2 weeks after they were prescribed), and I also picked up some Magnesium Glycinate and Melatonin – I was gonna get that man to stay asleep all night, no matter what it took. No caffeine after 2pm. No candy in bed. No cake or ice cream or brownies. Lots of water. Two Mag and two Melatonin at bedtime. And holy shit, did it WORK! He slept like a freakin’ rock! He was finally able to sleep all through the night, and on May 24th, he returned to work (thank god!)

He had a follow up UA on May 28th, and when the results came back, Dr. K called us to tell us that there was still protein in the urine; she believes that the kidneys are fine, but there’s just a “leak” somewhere. Kidneys aren’t supposed to let the good stuff, like protein, go through; only waste. She recommended a CT Scan of the kidneys, as well as referring him to a Urologist (for the urinary anatomy) and a Nephrologist (for the kidneys). She reiterated that there’s no cause for alarm, but with the kidneys not working right, the cause needed to be found. All referrals were sent as Urgent so that he would be seen quickly. 

Even though I knew I shouldn’t, I (of course) hit up Google to figure out what might be happening. Many results said it was Proteinuria, a sign of Kidney Damage. Then it got a little scarier… It could be an indication of Chronic Kidney Disease, which eventually leads to Kidney Failure which leads to Kidney Transplant or death. But, let’s not think about that… Possible treatment includes easy (yet hard) things like changing diet, weight loss, or (in some cases) dialysis. 

My brain is trying to pin the high blood pressure as the culprit, but at the same time… my brain is running away, indulging in horrid What If scenarios. Months and months of health issues. Sick husband who can’t work. How to pay bills. Having to be the only one who can do anything. And then Wednesday, as I’m doing dishes, out of nowhere, my brain decided to conjure up the idea of him dying, and envisioning how to tell my child that her father was dead, how to tell my mom, notifying not-as-close family and friends, and everything that comes with that. I spiraled deeper into this treacherous fantasy as I scrubbed pots and pans… Does he have life insurance? Would I be able to keep the house? What about all the places we said we’d go some day that he’ll never get to go to? God, it was terrible! I saw the next 50 years of my life, dreams we had, but without him in it… And then… then… My brain said, if he’s gone, why should I even stay in this town? How could I possibly live in this house, that we built our family in for the past 20 years? His memory is in every single square inch of this house. How could I suffer with that for the next 50 years? But then… I could I not stay? Leaving this house would be admitting that he finally was gone, out of my life, and that I was ready to move on without him. 

Have you ever tried to do something while trying not to cry at the same time? Lord, it was a shitty day… Every time I thought I was okay, another thought would cross my mind (He’ll never see the Pacific Ocean or He’ll never get to visit Japan) and I’d have to bite the inside of my cheek to keep my shit together. I was fine in bed while we watched TV, but of course, Lights Out Bedtime Brain does some seriously mean things, and once I was sure he was asleep, I had to go into the bathroom and sob (like ugly, mouth open sob) into a towel, just to get it all out. Like, how do I survive without this man? He is my world. There is no place in my existence that he has not touched. 

This morning (May 30th), I woke up and for a blissful moment there were no problems. He was sleeping. I was sleepy. Everyone’s bodies worked perfectly. Then I stretched and my muscles hurt (as they always do), and it was like snapping back into my body… There is an Ongoing Situation hanging over us, like a grey cloud. It’s not a black cloud, I tell myself today. Kidneys are fine. They’re just a leak. It could be something that can be fixed with a pill or a diet. That’s what I’m tying my hat to today. 

Everything is okay until I hear otherwise.