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…

Well here we are. In about 10 hours I’ll be leaving for the hospital to check in for surgery. Barring no emergencies that would need that OR or the surgery team, everything is set to start at 8:30 am. It will likely be a 4-5 hour surgery. I really feel for Craig as I know the hardest will be on him as he waits.

Charlotte, my pelvic mass, will be leaving me, but Liza is here to stay. This has brought me many tears today and bouts of panic. I’m scared to death at the magnitude of this surgery and I am beyond words sad that my life will be forever with a bag.

The weekend was spent “nesting” as if I am having a baby. I cleaned, cooked, shopped, did laundry,… I’ve been following the pre-surgery instructions which ask you to put on clean bed sheets three days before and also the night before. I’ve taken my shower with a bar of soap (no gels or loofa’s!) and am instructed to do that again in the morning. The only instruction I won’t follow is no face lotion. If you live in Colorado you know why.

I was able to go for a nice long run this morning which was slow, but amazing too. I really needed that. The only way I clear my head is exercise and when I had a cold last week I had to put that on the back burner. I am already counting the days until I can get back to running the trails.

I’ve received many texts, a few phone calls, a few visitors… I’ve had several funny snapchat convo’s with one sweet friend who has talked me off the ledge multiple times. I have the plan set for Craig to update friends and family without overwhelming him. I have a wonderful meal train, a dog walker, a whole village. Please feel free to text me after tomorrow and if I’m able to respond I will. My hope is Craig does not get bombarded with texts. I have my two sisters coming at various times this week while I’m in the hospital. Craig decided this would be most helpful to him for when he can’t be there to help me get up and walk the halls. I’m thankful that they are coming and I think this is a better plan as well- as long as they don’t ask too many questions to the dr’s, nurses (or me!) LOL. I wasn’t really sure the right answer of when people should come, but used Craig’s guidance. Once home I think I really just want my couch, rest, and friends to pop in for an hour or two here and there.

I wish Emily didn’t have to go back to Baylor today, but the timing worked out that way. I’m sure it’s not easy for her to leave at a time like this, but I’m glad she’s with her fun roomies and in a place that makes her happy. Ryan is off of school tomorrow for MLK and will hold down the fort. The last thing I want for him is to sit at the hospital and I really won’t want him coming at all this week. Adults hate hospitals bad enough. No reason to have him sit and see me in misery, especially when he has Crohn’s as well.

I’m going to head to bed soon and I’m sure Blue will be right behind me. He may actually already be up there warming the covers. Bedtime is his favorite and he waits for me every night. I know he’s going to miss that this week. I pray that my surgeons are getting a lot of rest tonight, that we have no surprises tomorrow, or complications. That I wake up with pain control, don’t land in the ICU, and can begin the road to recovery quickly. I also pray that I can get to the hospital without too much panic because today has been really, really tough. I know I’m in great hands, but it certainly does not make this any easier. Liza, you’ve been good to me, but I really wish you were getting hooked back up to my colon and disappearing back under my belly instead of kicking my colon out. Charlotte, I bid you farewell. You are free to go.

Until next time…

I was going to wait and post on Sunday night, which I still will do, but I was suddenly overwhelmed with not only what lies ahead, but reflecting on the start of this blog back in November, 2021.

The main page of my blog speaks of the start of my journey with an ileostomy. But, a big part of that front page journaling was how I planned to “kick Crohn’s butt once again.” That didn’t happen. In fact it kicked my butt. My body was unable to respond to colon rest and here we are, just over 48 hours from taking my colon out. This is incredibly hard to swallow and makes me so sad.

I suppose we could look at this another way and say that despite what Crohn’s did to me the past 16 months, I responded with still living my life. I didn’t slow down much. I responded with getting back to running, skiing, traveling and not being afraid to empty my bag trailside. I flew over the ocean to Iceland and hiked as far up as I could go taking in incredible views of the landscape. I attended everything possible for my kids whether that was a visit to Baylor, a lacrosse game, a travel tournament, lot’s of porta-potty emptying, college visits… I continued to volunteer and say yes, to most things. I hope I’ve been a good mom and wife doing my best to take care of my family. I wouldn’t do anything different. We really are only given one life and I will always have the attitude that only you can choose how to live it. I am not a pessimist

I know I should be proud of this because so many people in my situation would completely shut the world out. But, I need you to understand that even with this attitude and hearing how from all of you how strong I am, how resilient I am… this does not make this any easier. I have lost this game. I have lost to Crohn’s. It kicked my butt and there is no turning around from losing your colon. Liza is here to stay.

I know this is hard to understand as an outsider looking in. I shouldn’t expect people to have pre-med degree’s and understand the disease process of Crohn’s. But, if it’s ok with you, I’d like to kindly request a few things. Asking these things, with so much love and appreciation for all of you. Please don’t say to me, “at least this will be over”, “now you can move on with your life”, “you can put this behind you and not worry anymore.”, “keep a positive attitude Jen.”, “geez, if it were me I’d have them take both ovaries and uterus, be done with them!” Crohn’s is FAR from over for me. In fact, the majority of it will still live in my body even after I have my colon taken out. You have a lot more small bowel than you do colon and I have Crohn’s in a large chunk of the small bowel I have left. I will still be treated aggressively with infusions and oral medications. I will still have scopes and I will still always be waiting for what’s next. This surgery on Monday could put my small bowel Crohn’s into a big flare like it did in 2021. We will still have to care for Liza which is a piece of intestine sitting outside my abdominal wall. She needs great care so that the skin doesn’t break down around her. As for the GYN stuff. Think for a minute about having a full hysterectomy (and or both ovaries removed) and also having your colon and rectum taken out. No, I do not also want to be thrown into menopause while dealing with not being able to sit on my butt for several weeks because of a huge incision down there. On top of dealing with other possible complications, getting Liza back on track, mending my abdominal incision….A hysterectomy would add a third incision. I have had so many women tell me to just have it all taken out and I hear you, but please hear me… (I still love you ladies who have said this, just needed to explain it).

So, I know we all want this to be over. I’m sure it’s exhausting for all of you as well. I want nothing more than to put this behind all of us. Yes, I won’t have to worry about pain when I sit on the toilet and that’s a big relief. But, imagine a life with a bag attached to your abdomen that fills with digested material that you look at and empty several times a day and night. Or, looking at your red, raw intestine poking an inch outside your skin. I am two days away from living with this reality forever. Not to mention the possibility of having both ovaries removed or a hysterectomy due to Charlotte (my large cystic mass).

I will continue to joke and find light in my situation. I will not slow down. My motto for 2023 is still the 4 G’s (Grace, Gratitude, Grit, and Guts). I will not give up on doing everything in my power to stay healthy so that I can avoid future surgeries on my small bowel. I will get back to running and skiing and traveling the world. I will not miss things for my kids and I will get back to volunteering someday or hopefully being stable and healthy enough to find a job I enjoy.

However, for the next bit, bear with me, it’s gonna be tough to accept what’s coming on Monday for me. One day at a time, one day at a time…