Your pain is the breaking of the shell that encloses your understanding. Even as the stone of the fruit must break, that its heart may stand in the sun, so must you know pain.
Kahill Gibran’s beautiful words have never reverberated more with me than at this moment in time. The past two and a half months have been the worst in my life. I had no break from my pain, no time to recover from my battles and wounds, and no time to hope for the light at the end of the tunnel.
Now that I’ve escaped from the hospital and am doing well, I find myself extremely emotional at times. This weight of emotion is usually triggered by music (a very beautiful cover of Landslide, Unsteady by the X Ambassadors). I just want to start crying but it’s not from sadness. It’s from an incredibly strong feeling of gratefulness and relief that I haven’t had more complications, that the cycle of pain is over.
And the reason his words come back to me, is that I have to find some warmth and positivity in what happened to me. I’ve shed another layer of shell that encloses the seeds of understanding, compassion, and empathy. Now that I’m free, I’m able to grow and stand in the light of the sun, enlightened by my experience. That’s what I take from pain. That’s what I learn from pain. And I’m grateful. Because I could learn bitterness or hate.
If you are my personal friend or follow me on Facebook, the rest is just repeat. Just know that all of you have shined some light into my darkness. If you’re finding all this stuff out for the first time, here’s where I’ve been. It wasn’t pleasant but I learned that people have so much compassion. And that’s beautiful.
Pancreatitis: 3 days
Ileostomy Takedown Surgery: 3 days
Postoperative Ileus #1: 6 days
Postoperative Ileus #2: 11 days
Total Days: 23
A Diary of Facebook Updates
I actually can’t bear to recount my experience again. I’m tired of it. I want to move on. But I still want to share with you all what’s happened to me and why I’ve been absent. So I’m using my Facebook updates I did while in the hospital to keep people informed on my condition. I’ll start the “diary” entry from the day of my surgery, since I was able to write about my experience with pancreatitis (which made almost all of August a horrible month).
Surgery Day!!! I’m off to the Kaiser in Antioch, where I’ll be put back together again. Pretty soon I will be left with only a few barely visible scars from my journey. Goodbye stoma, goodbye ostomy bag!
Hi all! So the surgery on August 30 went pretty well but I am now suffering from complications. Luckily these are pretty common ones so here’s what’s up:
-Home 4:00 pm Thursday
-Friday morning I started suffering extreme pain and vomiting. I’m advised to go to the ER
-I get fluids (apparently I look like a shrunken prune ?) and x-rays and CT scan
-Results show I have lots of fluid in my abdomen, really dilated intestines, and either a blockage or extreme slow intestinal movement.
-They put an NG tube in to pump out the fluid (inserted through the nose, down the throat and into the stomach). This will help relieve some of the pain, pressure, and swelling in my abdomen.
-Hospitalized around 4 yesterday.
-I still have the NG tube and I’m getting regular doses of nausea meds, dilaudid, and waiting for what the next move is going to be.
Hanging out with my buddies! I got that nasty NG tube out today and feel so much better without it. It had done it’s job and needed to go. I get an X-ray every morning which confirms what I still feel: my intestines are still dilated, blocked, and not functioning properly so I have to remain in the hospital. I’ll see what tomorrow brings!
The good news is each day I feel better. In fact, if I was to ignore past lessons and go with what I feel (I want to go home NOW), I would say I could run out of here. But I’ve learned my lesson and patience is the name of the game. I’m advancing to semi-solids today (cream of wheat, soup, etc.) and if I do okay with that, tomorrow I’ll be introduced to solids again (I think I remember those ?). Add another 24 hours to monitor how I do with those and I’m looking at busting out of here on Thursday.
The schedule moved up a little so I am homeward bound. Hopefully this will be the last of my hospital stays.
The brief time period where I thought I was getting better but then quickly realized I wasn’t.
So I might have left some of you hanging with my last update but things got pretty bad for me and I just couldn’t do any kind of updates.
I was hospitalized and spent Sunday in a daze. I remember at one point seeing my nurse’s face and her saying she was really worried. After getting pain and nausea medicine, I kept passing out. My heart rate was very high and my blood pressure very low and I had really bad chills. Everything was just a blur of faces.
Eventually I’m awake and coherent enough to be given a barium contrast solution to drink because they want to take x-rays 8 hours and 12 hours later to get a better picture( the cool thing is the x-ray machines come to me-I don’t have to go anywhere ?). I drink it with lots of ice because I know it’s the last water I’ll be getting for a while. I also keep falling asleep and my mom has to stop me from spilling the solution. The x-rays don’t show anything conclusive-no definite spot of blockage or stricture. I also start vomiting. Up until this point I don’t have a NG tube.
The cramping and spasms are so bad I am taking the opioid dilaudid every hour.
Monday morning comes and I’m scheduled for a kind of colonoscopy type procedure to check out my j-pouch. But it’s decided I need to have the NG tube inserted first. The first time I had this done it was bad. This time was diabolical. We’re talking projectile vomiting, choking, gagging, spewing, etc.
I get cleaned up and sit around for x-ray to show up so they can check if the tube is in a good position. Then I’m off for the scope and it’s a pleasure to be put out of my misery for a little while. The good news is there were no obstructions or strictures-which means no surgery is needed. I just have to wait it out. Which is what I’ve been doing.
I’m still taking pain and nausea medicine but it’s much less often now.
My throat is starting to hurt really bad from the tube so talking is really hard.
I can finally text because the first IV site in the crook of my arm failed. I have two IV’s on one arm: one for IV fluids and medicine and another IV for a nutritional liquid mix a.k.a. “Food”-all the doctors were concerned about my weight and malnutrition so they wanted to give me a little boost.
I might be put on clear liquids tomorrow but the tube is staying in as a safety net. So that’s going to hurt but it’s better than taking it out and having to put it back in.
I’ll try to keep the updates coming. Thanks to Kevin Parker for taking this family portrait and to my sister’s editing skills-I totally stole your picture ?
Well I felt the NG tube was bugging me but it was REALLY bugging me. Since it’s been put in, I’ve had 3,500 mL of liquid pumped out of me. It started off dark rust red brown but the the last two days it had changed to a deep red color. My mom thought it was blood but everyone kept shooting her down. Today my GI Doctor walked in and her eyes got really big and she said “That’s blood!” She had it taken out right away and then an hour later put me under for an endoscopy where she found bleeding ulcers in my stomach.
The medicine cocktail they used to knock me out kept me blissfully out of pain for a while, to the point where I thought maybe the ulcers didn’t hurt too bad, comparatively, to everything else going on. After waking up from a nap though, I did one walk around the floor and realized all the meds had finally worn off. Ulcers hurt. Everything else is healing pretty well and I wasn’t needing pain meds that much anymore. It’s too soon to tell how the ulcers change things.
I have one Popeye arm, thanks to the liquid nutrition. That stuff is tough on your veins and my arm is swollen because of it. They’ve had to play a round of musical chairs with all my IV sites, switching them, giving me new ones, taking out ones that are too infiltrated. They’ve been calling the ICU nurses in to mine my veins, who tell me I should heavily advocate for a picc line (a kind of central line catheter used for prolonged feeding) because this will keep happening and I don’t have any veins left.
I heard through the grapevine that I’m going home tomorrow but I don’t see how that’s possible right now. I’ve just graduated to ice cubes. They haven’t even tested me on liquids yet.
Thank you so much for all the support-it truly is a blessing. Have a wonderful Friday tomorrow!
Feeling much better-now I just have to take my medicine until they set me free.
Gah so frustrated!!! X-Ray still shows dilated loops in my intestines. There is still some hope of getting home tomorrow but probably not. I just have to think at least this way, the likely hood of me having to go through the whole painful process again will greatly decrease if I stay longer.
I’m so bummed. I am going home tomorrow. The plan was for today. I moved from a clear liquid diet, to a puréed diet, to solids successfully so normally I’d be good to go.
But for the past few days the arm that they’ve been giving me nutritional IV fluids and lipids has been getting increasingly painful and swollen. They tested for blood clots yesterday and they were only superficial, no treatment necessary.
This morning however, I woke up and my arm was worse: my hand was blue grey and the whole arm was swollen. They sent me for another ultra sound and this time, since the IV was removed, they did the whole arm. And towards my wrist, they found a deeper blood clot (deep vein thrombosis or DVT) that has to be treated with blood thinners. I have to wait around until tomorrow to get education on the medicine (for a few days I have to give myself shots +take a pill blood thinner for a couple of months). ??☹️
On my way home ?. Thank you thank you thank you!!!
Recovering from Pain and Standing in the Sun
My body after this whole ordeal. Weight: 95 pounds. The dots are from all the blood thinner shots I have to take for blood clots. The scar near my belly button is where my stoma was. All the rest are from the first surgery where they removed my colon.
I’m doing great now. Eating is easy and there is no pain involved. I’m still having to figure out what I can eat with my new system but it’s not so scary now. I’m hoping at the end of three months I’ll be able to have anything I want. My goals include gaining 20 pounds, to start lifting weights and doing yoga to help get some muscle back on me, and eventually (once I’ve gained some weight back) start running again. Meanwhile, I’ll continue to bask in the warmth of the figurative and literal sun.
I’m well enough now that I want to start posting again. I have a whole bunch of cookie recipes that I’ll start sharing. I’m really bummed that I missed the whole Halloween/Thanksgiving food blogger period. But next year, next year. And I still might be able to fit in a Thanksgiving pie or something.
My Whole UC Story
You can read my ulcerative colitis story in order or you can browse all my ulcerative colitis and health-related posts here:
- My UC Story: where and when my ulcerative colitis symptoms first started
- Part I – The Beginning of My UC Story: what my symptoms were and the struggles I had getting health care
- Part II – UC Diagnosis and Adjustment: how I was diagnosed and how I struggled to adjust to living with ulcerative colitis (including diet experiments, and getting frustrated with doctors not listening to me)
- Part III – UC and Severe Back Pain: my ongoing struggle with severe back pain + getting a new GI doctor that listened to me and who sent me to a rheumatologist
- Part IV – Sacroiliitis Diagnosis and UC Remission: getting diagnosed with sacroiliitis, getting on Remicade, and finally going into remission (with both my UC and joint disease)
- Part V – The Second UC Flare: my slowly deteriorating health, worsening symptoms, colonoscopy, and my first ER visit
- Part VI – First Hospitalization: my first hospitalization from my second ulcerative colitis flare and my experience with bowel rest and edema (swelling from fluid).
- Part VII – Being on Prednisone for My Second UC Flare Recovery: being on Prednisone for the first time and the various effects it had on my mind and body + adding mercaptopurine (6MP) and allopurinol to my daily routine
- Part VIII – Third UC Flare and Second ER Visit: my third UC Flare experience, symptoms, ER visit, and tests and procedures (CT scan, proctoscopy, etc.)
- Part IX – Recovering From Two Consecutive Flares: being released from the ER and the struggles of recovering from two consecutive UC flares (three months apart)
- UC Planning Realities: Trying to Write and Defend a Thesis: the difficulties in making long-term plans with UC and trying to meet thesis deadlines while in a flare
- Post UC Flare Routine: my post UC flare routine that helped me manage my physical and emotional symptoms
- Body Image and Mental Health with UC: Stop telling me I look great: the connection between body image and mental health and how my experience with ulcerative colitis has complicated my relationship with the two
- Making Travel Plans with UC: the difficulties in making travel plans with UC
- The Nightmare of Ulcerative Colitis: I compare a reoccurring childhood nightmare I had to the nightmare of ulcerative colitis
- Part X – Fourth UC Flare: My fourth UC flare experience, symptoms, hospitalization, tests, procedures, next treatment steps, and recovery
- Hanging Out in Limbo: waiting for experts to weigh in on my situation is like hanging out in limbo – I have no new treatment plan and I don’t know what the future holds
- Part XI – How Losing My Colon is a Transformation and Not a Loss: I’m losing my colon soon. But read about how this is a transformation and not a loss and how I made the decision to remove my colon
- You’ve Just Crossed Over into the Prednisone: Being on prednisone is a lot like being in the Twilight Zone. Things aren’t always what they seem, it can be hard to navigate and understand your surroundings, and often times you feel like you might never come back. Or the even scarier thought: that you might not ever want to come back.
- Recovery Reads: a list of some of my favorite books to read while recovering from UC flares, hospitalizations, and surgeries
- Pre-Surgery Jitters: my pre-surgery jitters in the days leading up to my j-pouch surgery on May 20, 2016, and how I distracted and pampered myself
- Part XII – J-Pouch Surgery: what my j-pouch surgery (proctocolectomy with ileal pouch-anal anastomosis) was like, including prep, surgery, and recovery
- J-Pouch Surgery Recovery: j-pouch surgery recovery is a full-time job with lots of road bumps along the way including bladder problems, dehydration, exhaustion, healing stitches and scars, pain and emotions, and adjusting to life with a stoma and ostomy bag
- Stoma Life: what my stoma life, the three months I lived with an ostomy bag, was like, including the physical and mental adjustments I went through, procedures, and what travel was like
- Part XIII – Pancreatitis: my struggle with pancreatitis including symptoms, tests, my ER and hospital stay, pain management, post-discharge recovery, and pre-op prep
- Part XIV – Ileostomy Takedown Surgery: how my ileostomy takedown surgery went, including prep, the surgery, hospital recovery, and complications
- Recovering from Pain and Standing in the Sun
- Surgery Recovery and Diet Problems: Physical and diet difficulties from post-surgery recovery and complications from pancreatitis, post-operative ileus, and pouchitis
- Everything is Shiny and New
- Hitting the Wall and The Privilege of Scars and Wrinkles
- Experiencing Loss and The Power and Comfort of Creativity
- Hauntings, Superstitions, and Giving Back: Reflecting on Being Hospital Free for 2 Years