It’s 3:30 am and I’m writing to you from another uncomfortable hospital bed. My nurse just came in to get my vitals, weigh me, and provide my meds. At least sock jail only lasted 45 minutes and I was quickly released to move on my own.

The CT I had yesterday showed “smalls” is rebelling a bit. There were all kinds of fancy words in the report, but in short, I have a partial small bowel obstruction. Not great news, but also not that uncommon after surgery and something I’ve dealt with multiple times in my Crohn’s career. The good news is I’m still moving a little bit through and we aren’t dealing with a complete obstruction. It’s just that everything that goes in my mouth is very painful, even fluids. Then add nausea and vomiting to that. FTR, vomiting itself is bad enough, but after abdominal surgery, oy…

Anschutz was a zoo so I was direct admitted to Long’s Peak Hospital in Longmont. It’s small and quiet and hopefully is able to work it’s magic to get me through this. Usually PSBO’s resolve with time, but if a procedure is needed I would go back to Anschutz where my team of doctors are. I do like being closer to home and at a less busy place, but it is a little unsettling to be away from Dr. G and Dr. V.

The plan for now is IV fluids, manage pain and nausea, and begin a liquid diet to see how it goes. I guess dehydration itself could make the bowels unhappy. I will be having a consult this morning sometime with a surgery team and GI (I think). Dr. V does not feel this is an active Crohn’s reaction, but more of a post surgery reaction. Obstruction could be due to adhesions. Besides being obviously dehydrated in labs the only striking result was a platelet count of 700. Normal is 100-400. Dr. G looks at platelets a lot for inflammation. Thankfully, my WBC is normal so no infection.

On another note, I did lose it a bit on the phone with Dr. V. He can sometimes come across as an arrogant asshole. I felt the CT results spoke for themselves, but he kept questioning how I was feeling. Maybe he can’t admit there is a complication. It’s like he was annoyed at me I was getting dehydrated. I don’t know. What I do know is I have been miserable for nearly a week now. He can stay on his pedestal as long as he wants. I’ve always been my own advocate and I don’t intend to stop now.

I’ll have more post consult. Gonna try to catch some Z’s.

UGH. I’ve been off the grid for a bit because I feel like hell.

Mid-last week I began to have an increase in abdominal pain and nausea along with an even greater decrease in appetite. The last time I had sort of a normal meal was Friday. And by that, I mean a very small bowl of pasta. The pain episodes are very intense and seem to be associated with eating although not all the time. I have vomited 3 days in a row.

I’ve had phone calls with Dr. V’s nurse and his PA. Dr. G is out of the office, but I’m sure aware of the situation. I will be getting a CT tomorrow morning and then will have a scheduled phone call with Dr. V in the afternoon.

To say I am frustrated, sad, mad, overwhelmed… is a major understatement. I was feeling pretty hopeful at week 2. I am so miserable that I welcome anything to make this go away. I’ll gladly go back in the hospital, be hooked up to TPN (total parenteral nutrition), go on steroids…. anything.

I don’t really have anything else to say for now. I can barely keep my eyes open.

I’ll be in touch when I know more.

The phrase “putting a square peg in a round hole” came into action today at my post op drain removal visit with the surgery PA. HOLY $&#%! I was NOT expecting that experience to be the way it was. As you see in the photo below, my drain appeared to be just small round tubing that goes into my abdomen and sucks out abdominal fluid. Do not judge a book by its cover. The inside is a mystery.

First, we went through the normal post op questions of how I was feeling, any concerns, etc. My biggest issue is still zero appetite, but I’m hopeful I’m turning a corner with pain. Still doing meds around the clock (mostly, that bit me last night when I forgot before bed), but far less of the hard stuff.

After chatting I hopped up on the table. She took the stitch out which wasn’t fun, but not too huge of a deal. Then she said “this is kind of like ripping a bandaid off. We do it fast so it ends fast.” (LIAR!). “Take some breaths through it” Then she goes for it. OMG. I don’t even know how to describe it other than it was the grossest, weirdest, most painful thing ever. I felt like she was pulling for 30 seconds. It was likely 5. I felt like I was hyperventilating through it. It was so awful. Craig said I was pumping my legs squirming so much like I was riding a bicycle.

When she was done she asked if I wanted to see it. I initially said no. Craig wanted to see it. I hear him say “Oh wow, I didn’t expect that” or something like that. So then of course I wanted to see it. Below is a picture of what it was. There are varying size. Mine was 31.5 inches long!! The worst part… the last 1/3 of it was that rectangular looking piece. Hence the phrase “putting a square peg…” I am very glad I did not google what this JP drain thing was before today. I probably would have had to be knocked out for removal. I know drains are common for a lot of procedures, but almost 32 inches in my body seems a bit much. You can see below what I mean about the white rectangular part. I did get a kick out of the fact that the bulb part is actually called a grenade. Exactly what it looks like and exactly how it feels this afternoon with how sore I am. I think I was hit by one.

When we were leaving the hospital I felt really light headed and like I was going to puke so I had Craig go get the car. That feeling lasted a bit, but I’m better now. While that experience was horrific, it is also very freeing. I’m so glad to be done with that darn thing. I did find it weird that they don’t stitch up the hole after removal, but it is what it is.

We also talked about my incisions which look really good. I think she was surprised I was not having more butt pain. That was what I was most worried about with this surgery and I am pleasantly surprised that the pain down there has been very minimal. Sounds like I’m over the hump for abdominal complications, but the wound healing down below takes a very long time. She’s seen infections come weeks and months later so I have to be vigilant taking care of it and watching for pain or other symptoms.

One thing that has been bugging me a bit is not feeling like I’m emptying my bladder completely or slow emptying. I learned today that they did a bilateral ureterolysis. I guess both ureters were trapped with scar tissue and needed to be released. So, I’m sure that contributes to that symptom and some of my pelvic pain which will get better with time.

I have another post op next week with Dr. V which hopefully will be uneventful. I’m still definitely in the recovery phase and was reminded today of how much work was done on me. This was a big surgery and I should expect pain to still be present, nausea to take over, and my appetite to be poor for a bit. I’m just not a very patient person. Bridget put it in perspective today though so I will go easier on myself. I’m definitely turning a corner, slowly…

I’m not sure if this is going better or worse than it should. All I know is this is hard.

It has been such a rollercoaster of days since Monday. The pain episodes are following no pattern and catch me quickly by surprise. I’ve had a couple of good days, but more times than not I am on the couch watching Netflix. Occasionally, I make it to our cozy coffee corner chairs. I can’t seem to be upright very long without being in pain. I know this will get better, and I do need to keep reminding myself I am only 12 days out, but right now it’s tough. I am also not patient, so maybe I should work on that.

I’m still sleeping on the couch, but I think tonight I’ll give the bed a whirl. My back is telling me I need some new bedtime digs. With the exception of last night though, I have been getting a ton of sleep. My heating pad is on almost 24×7 which may not be good for our Xcel bill.

The nausea is so frustrating. I have zero appetite and I mean zero. Even some of my favorites sound horrible. I am forcing myself to eat meals. If I had my way and didn’t need food with certain medications I probably would eat even less. I really don’t want to lose more weight though. I’m down from surgery day and imagine that will continue to decrease more over the next few weeks.

Well, that was a bunch of doom and gloom! Sheesh. I walked away for a few moments to do something and came back to this. I shall remember that I am only 12 days out and I shall continue to be forever grateful that I have such an amazing husband. He sure takes great care of me.

My aunt texted me the below picture this morning. That is exactly how I feel! I am ok, but boy, I truly feel like a house fell on me, a train hit me, or something catastrophic happened. I suppose that’s exactly what happened. Either way, I am home, and I am ok!

There really is nothing like home especially when you come from the hospital. The constant nurses, dr’s, CNA’s, food service people that are coming in at all hours of the day is annoying. From 4 am on you get no rest. First, the 4 am phlebotomist, followed by 4 am meds and then vitals. Always like 20 minutes apart. It’s apparently too hard to coordinate that. Then, between 6-6:30 you get the surgery team. At 7 am you get introduced to the new nurse, etc. I did find out that surgery residents work up to 80 hours a week! One night a resident checked on me at around 8:30 pm and then was back for 6 am rounds.

Anyhow, being home has been wonderful. I have slept pretty well the past 2 nights. It’s been on the couch because sleeping upright feels a bit better, but at least it’s sleep. The pain has been the hardest part. At night it’s been pretty good. The worse is usually around 7 am. I don’t do well with narcotics, but there is no way around them for me. I am spacing them out as much as possible, without getting behind.

I’ve had a bit of time to read the surgery and pathology reports since I’ve been home. The thoroughness is remarkable which I suppose should be when they are cutting you open and removing organs! The reports are long and I have learned a few things.

I already told you all that when I read the initial surgery report I read how severely damaged my colon was. Especially the part where everything exits. Words like severely stenotic, mural fibrosis, ulcerated… were all mentioned. Words that mean there is no going back to healthy from here. Reconnecting me would have been excruciatingly painful.

The second thing I learned from the surgery report is that I have a STAB WOUND! I can now put in my resume that I was stabbed at age 47. This is what they call it when they have to put a drain in. My output is slowing down and I should be able to get the drain out by early next week I’m guessing. I wonder how they are going to stitch up that stab wound?

Lastly, I learned that I have a very large uterus. Good thing they didn’t have to remove it. Since it is so large it eliminates the need to use mesh to fill in any dead space. Dr. V wrote in the report that my uterus was large enough to fill the area so that my small intestine wouldn’t fall lower than it should. This makes me feel good because I don’t think anyone really wants any foreign materials placed in their body if they can avoid it.

So, all in all, I think surgery was definitely successful. Yes, we’ve had some bumps with the blood sugar crashes, infection, pain… We certainly are not out of the woods and there could be more complications coming our way. I could not do this without the support of my family, my friends, my village… From the meals, my sisters hanging with me at the hospital, playing cards to pass the time, just hanging out with a dumb Netflix movie, a text to just check in… All of it is so wonderful, so appreciated, and so needed for a successful recovery.

I meant to type this yesterday (or Saturday 🤔), but if’s been an awful few days. This will be a quick post because I’m having terrible trouble keeping my eyes open due to medications.

Friday night produced another set of low blood sugar and fevers. Drs determined I have some sort of abdominal infection which is not great news. The only positive is that I already have the drain placed in my abdomen in the correct place where they think infection is pooling. If I didn’t I would need that procedure.

I was put on 2 IV antibiotics that did a doozy on me, but did manage to knock the fevers away. They were tough enough on my body though (extreme nausea and pain) that Dr V chose to switch them out to oral ones that cover the bases but have less side effects. This happened Sunday afternoon.

Sunday overall has been my toughest day. Pain control and nausea was not in control at all. I was struggling to eat and drink anything.

Last night went well though and today (Monday) has been decent. I’m guessing the antibiotics are out of my body by now which is helping. When the team came by this morning they reported that my WBC is looking good.

The next step is making sure that today I don’t need any IV boosts of anything and that oral stuff does the trick. If I can avoid IV drugs and pain is controlled I may be able to go home tomorrow.

The hardest part for me is keeping my eyes open. I can hardly type, have a conversation, or watch TV. My head is constantly bobbing. It took me hours to write this. So… signing off.
I’ll give more details later. Sorry for typos too.

Perhaps I need to stop writing blogs while in the hospital. They seem to be really pissing off my bodies blood sugar reserves. For the second night in a row my levels tanked. This time it was much worse.

I woke up and my heart was racing and my arms and legs were shaking uncontrollably. I paged the nurse and when she came in she raced and got several blankets thinking I was super cold. After a few minutes we realized I was not cold at all. The shaking was due to low blood sugar. My level started in the low 50’s and after several juices and crackers we got to over 100 which was great.

What wasn’t great was that my temp spiked to 100.2. I was given Tylenol and assured that in the surgery world it’s not uncommon to get temps post surgery. Especially this magnitude of surgery.

Ok, we can manage this. Around 6:30 am I spoke to the surgery team and thankfully they didn’t seem as worried. The low blood sugar was likely due to a post surgery metabolic response (I don’t totally understand the science around this, but seems reasonable). They were not worried about fever either. It was below the threshold where they worry. 101.5 or above sets off alarms.

The rest of the day wasn’t great, but it was ok. Since my temp is normally around 96.8-97.4, over 100 is tough on me. I felt pretty crummy the rest of the day. Not a great appetite, very low energy to take my walks, and unfortunately, around 2 pm I had another blood sugar episode. I didn’t follow protocol and should have paged the nurse prior to eating so by the time she took my level it was in the 80’s. Next time I’ll listen and not eat right away.

The surgery team came in and reiterated a lot from this morning. I need to have snacks more often, especially one right before bed. They also said if I spike a fever of 100.5 or higher they will need to start antibiotics. They are lowering the threshold for me.

Kristin stuck around for a bit so she could get Maureen at the airport. We walked a few laps, had some dinner and most importantly I changed my socks. I decided by this point I deserve something a bit more fun than brown. Hopefully they don’t kick me out lol. I’m such a rebel I know.
Check out my cute socks and my snacks lined up ready to save me.

Today was full of surprises. I’d love to say that they were all good surprises, but that wasn’t the case.

Last night was fine until about 3:30 am. I wrote yesterdays blog around 2 am and promptly crawled into bed. At 3:30 I
woke up and room was spinning, I was nauseous, my head was hot, I was shivering and shaking. Worried about a fever I paged my nurse right away.She realized pretty quick it was my blood sugar being extremely low. Sure enough she did the finger prick and I was very low. So, I drank a ton of juice and had crackers and within a hour I was up and running correctly again. Thank goodness it wasn’t a fever!

Dr. V’s team came in around 6 am. Turns out rounds for residents are indeed early. Just like prime time tv suggests!! My goal today is getting rid of the epidural and transition to oral meds. I MIGHT be able to go home tomorrow, but one step at a time. The pain needs to be manageable. They just cut the rate in half so we shall see😳.

On another note, because my rate was so low and I likely follow some other school criteria… drum roll please… I graduated to brown socks! Likely the ugliest socks I’ve ever seen, but I’ll take what I can get! Now I can go potty by myself, shower, and take walks with Kristin and Craig’s help.

Now, by far the best surprise of all! I had a fluffy visitor to my room this afternoon- a therapy dog! Darla is a 2 year old Old English Sheepdog and boy was she cute! She had a beautiful gray and white coat. While I don’t love hospitals It was nice to be on the other side- receiving love and kisses from a pup. Most of you know that Frisco was a therapy dog and I brought him to hospitals. He made such a huge impact on patients and staff by brightening their day s bit.

My epidural completely left my body around 2 pm. The rest of the day was spent working on dosages and different options for oral meds. Tonight has definitely brought on more pain. I’m hopeful though that tomorrow will bring a bit more success on managing the pain so I’m one step closer to going home. I’ve also been told that my drain that comes out of my abdomen and fills a grenade looking container needs to significantly collect less output before they remove it and stitch me up. Liza, this is a friendly reminder that you need to stop having so much beauty sleep and give me MORE output while grenade friend gives me less!

One last little surprise for me was that I got to take a real shower and wash my hair. I feel like a different person and way less paranoid about the stench that is coming out of me.

That’s it for now. I’m about to page Clara my nurse to give me an iv boost of dilaudid. I can do that once in a while between the oral form. It’s not been a pain free night that’s for sure.

More tomorrow…

it’s 2:30 am and I can’t sleep. I had a good stretch, but woke up needing to empty Liza’s bag and my abdominal drain. The good news is I got to ditch the catheter Wednesday morning and my bladder quickly woke up to do its own thing. Once a catheter is removed you are on the clock. You have 6 hours to pee on your own or the catheter goes back in. Talk about motivation!

Unfortunately, even though I feel more stable to walk I’m still in yellow sock jail. Yellow means a patient can’t walk on their own ( not even to the potty) without a nurse or cna. The computer has some program that determines fall risk based on which medication I’m on, magnitude of surgery, age, etc. So, I’m fairly certain I won’t graduate to brown socks until I ditch the epidural. Hoping the weaning process starts today. It would be nice to have Craig or Kristin as my walking support.

I do feel I’m headed in the right direction for recovery. It’s just going to take time and a lot of patience. I am losing my patience a bit on washing my hair! I did bottom area wound care yesterday in the shower, but she wouldn’t let me wash my hair. Oh well. I guess I’ll break out the dry shampoo.

First, bear with me on this blog. I’m on a big cocktail of pain meds and my vision is a lil’ blurry.

I know the other day I said I wanted no surprises to be found during surgery. One was found though and it was a good one! More on that in a minute…

Pre-op was very organized with great nurses and went pretty quick. I signed consents, one of them with Anesthesia who manages the pain control. My original plan was starting out with a PCA pump and consent for an epidural in case I needed one later in post op for pain. Well, that plan didn’t last long. The anesthesia team made some good points suggesting that I should start with an epidural. PCA is full of narcotics and works inconsistently. They feel like the epidural is much more effective. On top of that, given the type of surgery, it would be difficult to get in the right position for them to place the catheter after surgery. It’s working pretty well. It needs a few adjustments occasionally (like for a tanking blood pressure response they needed to reduce flow rate for at 2 am), but I’m glad I chose this plan.

As for the surgery itself, it went well. Dr V opened me up and got things (organs 🤔) out of the way for GYN. The plan was that Dr B would remove the 10cm cyst , but i think it took up too much space. So, Dr V drained it (sent fluid to pathology) and Dr B came in to remove the capsule. The surprise is that she/ radiology / other GYN’s thought for sure the cyst was swallowing my right ovary. It was actually coming from the left! Goes to show that imaging is not perfect. The darn thing was so big nobody could find it’s home base. So, she took the left ovary and kept the right. Phew!

Dr V then came back in to take the colon; rectum, and anus. I read in his post op report that anal area was severely diseased. It’s so tough to swallow my new reality now with the bag; but after I read his report I am confident I never would have been successfully reconnected. I have about a 9 inch abdominal incision plus an incision in my butt area.

All the things are now at pathology. I’m picturing my colon in pieces in a jar. An initial stain of the cyst fluid shows some type of infection. I’m really hoping it’s minor. They have to wait for a full report which could take a week or so.

As for how I’m doing, I think pretty average for this type of surgery. Pain gets under control for a while and then not. Tonight is worse than last night, but I’ve got a great nurse who will stay on top of it. Anesthesia also just poked their head in. I’m on a normal diet today but taking it easy. Liza’s output isn’t great which worries me a bit. One major side effect is my small intestine falling asleep after a day or two of abdominal surgery. Fingers crossed! We all know that was a big reason my first hospital stay was 3 weeks long.

My sister Kristin arrived tonight and took an Uber to the hospital. We visited a little; but it was getting late and the snow is coming down so I sent her and Craig home. Schools are canceled tomorrow because they are predicting 10-12 inches! Hopefully the roads clear enough for Kristin and Craig to come back in the morning after they dig themselves out of the neighborhood.

I think that’s it for tonight. I’m hoping I get some rest, but that rarely happens with all of the vital checks etc. Oh! Maybe I’ll get a 4 am visit from the same phlebotomist. This 20 something kid told me he was having a tough night because his girlfriend broke up with him just hours before. He was so sweet! We talked for like 15 minutes and he was asking me advice. We analyzed (on pain meds!) each of their personalities and interests. In my short counseling session he came to a few realizations that he didn’t grasp before about how different they are. He told me I was so helpful. Lol!

My goal tomorrow is to walk more than from the bed to the chair. I’m very weak. I know it’ll take time though and I need patience. I also have 5 lines coming from me. Two IV sites, a catheter, a heart rate probe thing, and lastly a drain from my abdomen that’s collecting fluid and blood. They do that because we don’t want those fluids traveling south and break through butt incision. Hopefully we can wean from the epidural too. One side effect is itching and boy do I have that!

I’ll try to update tomorrow too. This is going to be a long road, but I’ll get there…