First Surgery Post Mortem: Suck it, Colitis

by on Tuesday, May 19, 2009 14:59
This entry is filed under: Coping/Support

I can now make fun of people with colons. Surgery went down on May 11th, and I am now back home to finish recovery. Here is a quick summary for those interested:

Day 1:
Progress: Felt excited going in to surgery, mostly because I couldn’t wait to get rid of UC after all this time. I remember a bit of the prep, but not much afterwards. I do remember hearing my manager’s distinct laugh at some point, and it was later confirmed that he visited while I was in recovery. How weird is that? Lameness: I was in the recovery room for 3 to 4 hours, instead of 90 minutes. I apparently didn’t respond well to the pain, but I don’t recall. The doc also later said that my entire large intestine was in pretty horrible shape. Fun Fact: They have this inflatable blanket filled with hot air called the Bair Hugger. It heats you up fast, and so help me I want one for home usage. Hot Tip: If you have arm hair, shave it off before hand. One of the most painful things during my entire hospital stay was tape removal from body hair. So many, many tears. They shaved part of my left hand during the beginning, but ended up using my right hand for the IV. Dangit.

Left to Right: Excited to get in for surgery; A Kodak Moment; The Awesome Bair Hugger

Left to Right: Excited to get in for surgery; A Kodak Moment censored; The Awesome Bair Hugger

Day 2:
Progress: Upgraded to ice chips. I love you, ice chips; you really helped out. Had a short painful walk to across the hallway. I really don’t remember much else, except I briefly made it to a chair. Lameness: Beats me, I can’t remember. Probably a lot of pain. Fun Fact: I don’t see how I can ever do bowel prep again. Bwahaha!

Left to Right: Testing my lung activity; Somehow made it to a chair; My first walk

Left to Right: Testing my lung activity; Somehow made it to a chair; My first walk

Left to Right: Ileostomy bag and JP-Drain; Close up of JP-Drain that accumulates excess fluids

Left to Right: Ileostomy bag and JP-Drain; Close up of JP-Drain that accumulates excess fluids

Day 3:
Progress: Walked a bit more, felt more aware of where I am and what’s going on. First popsicle! Lameness: I had bad nausea that night and couldn’t sleep. I also dropped the nurse-call button and was stuck without help until they did the rounds. They didn’t want me to drink any water when nauseous, so I was thirsty as well. Didn’t sleep much. This is exactly why you don’t stay up to watch the Lost Season Finale in a hospital. Hot Tip: Tie that dang nurse-call button to your bed so you don’t drop the entire thing to the floor. Fun Fact: The patient is at an angle during the surgery, with the head a bit down. They pump you full of air to maneuver a bit better through the organs, which explains the gas pains and bloating afterwards.

Day 4:

Progress: Now on Pureed food! So long, horrible broths. First complete Ileo bag change! Hot Tip: I can’t stress this enough. The nurses can’t stress this enough. The people on this site who had the surgery can’t stress it enough. Walking is your friend. Do it, and do it often. If you can’t walk, the movement from lying to sitting to standing is a huge, huge win. Bonus Hot Tip: Heparin shots (used to prevent blood clots) feel like wasp stings after the wasps were dipped in poisonous lava. I recommend you take them in the shoulder (you have a choice to where they go, so don’t go for the stomach!).

Left to Right: First Ileo bag change; Stoma still to be named; Attempt to escape from the hospital

Left to Right: First Ileo bag change; Stoma still to be named; Attempt to escape from the hospital

Day 5:
Progress: By complete surprise, the nurse removed my catheter. I was caught off guard (press the pain button! press the pain button!) and holy cow. It didn’t hurt, but it was rather uncomfortable for that quick pull. Super Ultra Lameness: Saturday was a low point. I was starving and wanted to learn more about my ileo bag, but my assistant nurse was a “floater” from a different hospital just helping out. She didn’t know what the bag was called and hasn’t emptied one in 10 years she said. I was horrified. I needed reassurance from the nurse, not questions. The UCSF nurse group is awesome, so I hope you understand my disappointment with that one loose-cannon nurse. To top it off, my lunch was a little thing of mushroom soup. Mushroom soup? It’s on my Avoid Post-Surgery list of foods. What gives? I was pretty unhappy. I’m glad my mum was there to lift my spirits. Fun Fact: I can’t be disemboweled at this point, or, at the very least, the serial killer who tries to disembowel me will be very disappointed with the results. In your face, serial killers!

Left to Right: Blood clot from JP-Drain (creepy); Stoma swelling is down; very happy to upgrade in food

Left to Right: Blood clot from JP-Drain (creepy); Stoma swelling is down; Very happy to upgrade in food

Day 6:
Progress: My first full shower! They had to cover the hand with the IV-tubes in a glove, but I had horrible horrible freedom for 20 minutes (no attachments to the IV stand!). Haven’t pressed the pain button in a while. Cleaned my own bag! Finally got a menu! Got solid food! Lameness: Getting up at 4 a.m. to pee. This is a funny complaint, considering that with UC you had to get up every 2 hours in an emergency rush. It’s just weird to get up for a normal reason now : ). Fun Fact: According to the Discovery Channel (which I watched, a lot), horse meat is less fatty than beef. Just so you know. Hot Tip: The food at UCSF Mount Zion is actually delivered from the main hospital on Parnassus. This explains why the menu choices doesn’t exactly fit your dietary restrictions and they can’t pull last-minute favors. This also explained the mushroom soup incident.

Day 7:
Progress: Discharged! Lameness: Didn’t fall asleep until 2a.m. that morning. Walked 6 laps to get tired. Just as I started dreaming about resetting Terminators in each movie and how it would affect the box office for each (yeah, seriously), a nurse woke me up at 4 in the morning to weigh me. Really?! My weight couldn’t wait? The doctors then made rounds at 6, so I didn’t sleep well. Super Lameness: Whoever said laughter is the best medicine is a filthy liar. Laughing post surgery is incredibly painful. A few minutes before discharge, my spirits were up and there was silly talk involving a 90 year old magician, gypsy singers and the movie “Outbreak”. I ended up laughing, which caused so much pain I was on vicodin. Hot Tip: Don’t watch funny shows for a while. It really hurts. This is also a great indicator to tell you what you find really funny (based on my pain level, American Dad turned out to be funnier than Family Guy). Fun Fact: Try blowing your nose after surgery. It’s hard to do.

Day 8:
Progress: I slept in! Home nurse visited, she patched up my JP-Drain tube with a nice water-proof setup. Felt productive. She’ll bring in ileostomy bag samples on next visit (hello, velcro!). Lameness: Home nurse’s paperwork took forever. Thankfully that’s done. Fun Fact: For those with ileostomy bags: iron supplements will turn the stool black, but this is normal. Don’t freak out. Hot Tip: We should convince the ShamWow! guys to make medical supplies!

10 pounds lighter, tagging an Ileo bag and JP-Drain, and wondering how the body reacts to 5 feet of missing organ.

10 pounds lighter, tagging an Ileo bag and JP-Drain, and wondering how the body reacts to 5 feet of missing organ.

What’s Next:
I have to work on my posture. I can’t straighten all the way out, since my mid-section is still too sore and tight. I also soiled my pants on my first night home. The leakage through the bum is “normal” discharge, but I was caught a little off guard. I have a follow-up next week, and hopefully they will remove the JP-Drain by then (I have to have less than 80CCs of drained liquid, I’m currently at 200 or so, which is still better than the thousands of CCs I had immediately post-surgery). Let’s heal this up already.

Zzz…

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35 Responses to “First Surgery Post Mortem: Suck it, Colitis”

  1. avatar

    Lizz says:

    May 20th, 2009 at 8:25 am

    Wonderful synopsis! Glad you are home and still hilarious 😉 I loved the pics. You did a great job chronicling your journey! Interesting about the J-pouch drain…Mine was in my bum. Maybe b/c I had a three step? I dunno, but I hated having that tube up my arse. I always bugged them to take that and my catheter out. Amen to the walking. It helps with the gas pains too…Laughing does hurt a lot. It’s funny (ha) that you don’t realize how much you laugh on a daily basis and how much those abs are used to do so! (Coughing, and any other respiratory reaction will hurt too, heads up.) Subdued giggles are all one can handle for a while, but it gets better pretty quickly actually. I would have been pissed about the shroom soup! Once I was in this fancy hospital wing after a blockage where they had a freggin’ chef! I could hardly eat any of his wonderful foods. The ONE time I get a personal chef and I can’t eat. No worries, you’ll be eating things you love again soon. Take it slowly at first. I know you really want that apple, but don’t do it for a while!! Eat soft, well-cooked, bland things. Where can I get one of those Bair Huggers? Good luck, Brevin!!

    [Reply]

  2. avatar

    Christine Chavez says:

    May 20th, 2009 at 1:43 pm

    Your story was great, thank you, it brought lot’s of laughs to my husband and I!!! I am glad you are home and progressing in your recovery. Some of your story reminded us of when Ricardo was in the hospital especially the 4 a.m. weight check :0) I agree with couldn’t they choose a better time like when you are awake, not in the middle of dreaming to see how much one weighs :0). UCSF nurses were great I agree 110%. Well keep us posted on your recovery, looking forward to reading more.

    [Reply]

  3. avatar

    Redheadedmama says:

    May 20th, 2009 at 7:28 pm

    Awesome post! Congrats for having the surgery and getting through it. I can’t believe they weighed you in the middle of the night. I can’t even remember being weighed in the hospital. I guess it isn’t a Canadian protocol – maybe more of an American-weight-obsessed reflection? Just kidding.

    Anyhow, please keep up the posts. They bring a smile to my face and bring back a lot of memories . . . Welcome to the colon-free club!
    Kristen

    [Reply]

  4. avatar

    Elise says:

    May 22nd, 2009 at 2:01 pm

    Brevin, Bravo! and thank you for paving the way for me, please keep up with the posts, I am so glad you are home and you are on your way to a better life. I actually have an update too. I ended up in the hospital this past Monday, May 18th, just because I couldn’t tolerate the pain in this darn colon of mine. I am still here (Friday)(University of Virginia) and not responding to the iv’s and such, soooooooooooo I am on the docket for my first surgery this weekend (not June 23rd like originally planned), I am freaking!!!!!! I thought I had another month to prepare myself for this etc… Things have been going so well with the new boyfriend and it sounds crazy, but I wanted to spend more time with him before I go through all this. But it is good in a way too, I should now be a month ahead of schedule and it will be a month sooner than I thought that I will get rid of my pouch etc.. I don’t know which day this will happen this weekend, and I could be bumped because of a more urgent case, they are telling me I could be bumped if the surgery suite would be needed for something like a liver transplant. My biggest issue here has been having a roommate, it is a huge source of stress for me to have to share a bathroom. I am always nervous that she will be in there when I get my two second warning. The very gracious staff offered me a bedside potty (I graciously declined).

    What a huge mountain to climb, I hope when I get to the top the sun will be shining brightly.

    Sincerely,

    Elise

    [Reply]

  5. avatar

    Brevin says:

    May 22nd, 2009 at 7:30 pm

    Surgery Update: I’m back in the ol’ hospital. It’s not that I planned on coming back so soon. I had severe pain in my left to the point where I couldn’t breathe properly. I came in for a CT Scan, but they admitted me back in to UCSF just to check on my pain levels. Thursday night was particularly rough, since I was extremely nauseous and had an anxiety attack at the same time. I’m a thousand times better now, but this is what they found: A small blood clot in the vein leading to the liver. I’m in the lucky 10% that gets this after surgery. It’s nothing too serious, and honestly, if they didn’t do the CT Scan they wouldn’t have known about it and I would have been fine. But since they found it, might as well treat it (I’m on a Heparin IV to thin the blood, so vampires will be very disappointed when they run into me). I’m also in the lucky 20% that had partial blockage in the intestines. This seemed to have been the cause of my pain. You know that leakage through the bumbum? Apparently I had excess amounts of that liquid, so the residue in my j-pouch accumulated and then backed up my system. This explained my sharp pains, since the back-up was causing a domino effect through the rest of the body. I was minutes shy of getting a rubber tube stuck up my bum when I had natural discharge via the toilet. Thank goodness.
    So far so good, and I’ll be out Saturday evening God-wiling.
    Lizz, please don’t share your personal chef story yet. It still hurts when I laugh.
    Christine, one day when I’m President of Earth I’ll make it illegal for people to get weighed between 12AM and 6AM.
    Kristen, I hear in Canada they don’t even take your temperature. If you pronounce “about” like “aboot”, then you are automatically listed as “cool”.
    Elise, your bump in surgery date sounds like a blessing. You know what’s also a blessing? Those bedside potties! Just use it as a chair and wait for people’s reactions as they walk by. As for having a roommate, I can see how that is distracting, but maybe your roommate has awesome stories and celebrity friends that will visit.

    [Reply]

  6. avatar

    Redheadedmama says:

    May 22nd, 2009 at 10:24 pm

    Yeah, and our IV lines are full of maple syrup and water . . .

    Sorry to hear you are back in hospital though. I had the blot clot thing too that they happened to discover on a scan (of course, there is only one CT machine in Canada, and all 20 of us have to share it) that I had because I was having fevers post-surgery. They did some more tests and basically told me not to worry and just to live with it as I wasn’t having other related symptoms. I sometimes wonder if I’m I ticking timebomb . . .

    Hope you feel better soon!
    Kristen

    [Reply]

  7. avatar

    Elise says:

    May 22nd, 2009 at 10:39 pm

    Brevin!!! OMG, I am glad you are feeling better, but I hate all of that happening to you! At the moment, it is 1:30 AM night before surgery number 1 and they haven’t even started my bowel prep yet because I am throwing up and diarrhea from oral antibiotics they gave me a while ago. The two meds they just moments ago gave me through the I.V. seem to be calming down the situation though. This is gonna be a looooooooooong night! Also got news from my surgeon that I need the 3 part surgery not 2 because I am still on 40 mgs of prednisone. On the bright side I have made some friends out of my nurses this week and I am now in a private room :) Good thing we aren’t in the same hospital Brevin, I have a feeling we would be violating the no laughing rule, but I am grateful that we are in the same boat at the same time even if it is East/West coast. Get better soon and keep writing :)

    Sincerely, Elise

    P.S. I showed my stoma nurse today when I met him (he marked my stoma spot today), your pre-surgery humor of the treasure map, shark, your ad here etc… surprise for your surgeon. He is awesome and he loved it!

    [Reply]

  8. avatar

    Daniel Durrant says:

    May 23rd, 2009 at 10:59 pm

    unbelievable. The progression of your days is almost mirror to mine. I just had 30 inches of my small intestine removed this last Saturday, May 16th . It was completely unexpected. I hope you’re feeling better and I’m glad I found comfort from your blog and the media/blogging project I began for myself, in order to cope. Anyway, feel free to stop by. I’m going to make note of this excellent site and link to it from my community.

    [Reply]

  9. avatar

    Elise says:

    May 24th, 2009 at 9:18 am

    Brevin, I hope you are feeling better and have gotten to go home. I still haven’t had my surgery, I got bumped from the schedule both yesterday and again today. I am going to try to eat for the first time in a week here in a few minutes. If all goes well, I am going to go home and just continue with my original surgery date of June 23rd. I feel like I am on a crazy roller coaster and would like to get off soon :) I really do want to go home, so I hope the food doesn’t send me down a dark path. Keep us updated Brevin :) :)

    [Reply]

  10. avatar

    Brevin says:

    May 24th, 2009 at 11:23 am

    Surgery Update 2: I was hoping to escape the hospital today, but nooooo, my Stoma is being a jerk (stoma doesn’t have a name… yet). My output is a bit too much, so they want to see if an Imodium dosage will bring it under control. My last daily output was 1.7 liters. 1.7 liters! Holy crap (ha, get it: “crap” … don’t judge me). They want it to be under a liter a day. If I have over a liter of ileo bag discharge, then there is concern about dehydration. I’m fine with staying another day or two if need be. Everything happens for a reason.
    In other fun news: The blood thinning meds to help my blood clot (hilariously called LoveNox) comes in a little syringe that you have to inject yourself in the love handles. The problem is I’m down to 150 pounds (gadzooks, at least my appetite came back) and have no love handles, so I don’t have much to squeeze on the sides. I’m proud of myself for doing the first injection today, considering my hatred for needles. I just imagine I’m Nicholas Cage in “The Rock”, having to inject the antidote straight into my heart through the sternum. Tonight I’m starting on Coumodin, a med that will tag team with the LoveNox in getting my blood thinning under control. I have to get my blood checked every two days until it’s at a balance the docs prefer.
    At least I’m more mobile each day and can finally laugh without too much pain. My JP-Drain and IV’s are removed! I still have an IV in my arm, but it’s disconnected (I will have it until discharged). I think the JP-Drain caused a lot of pain, so I’m a ton more flexible with what I can do now.
    Daniel, what’s your link?
    Elise, If you were on the West Coast I would totally visit when you’re in the hospital just to mess with you while you’re drugged up: change the clock, take a few days off the calendar, pretend I’m a doctor, you know.

    [Reply]

  11. avatar

    Elise says:

    May 24th, 2009 at 3:43 pm

    Brevin you make me laugh :) I had to self inject Humira for awhile, it is an anxious feeling to get the nerve up. Is the Lovenox a pen or a syringe?? I am hoping it is a pen. Glad to hear you are doing better, sounds like you have turned a corner. I got to eat lunch and dinner today and so far so good, no unbelievable pain, so it looks like I get to go home tomorrow and go back to the original plan of the 2 part surgery – 1st one on June 23rd, provided I can get my pred dose down to around 25 mg. I did sneak outside last night :) Rich and I told the nurses we were going to walk around a little bit, but we shot straight to the elevator and went out through the ER, it was a beautiful 30 minutes of freedom despite my friend the IV Pole. We stayed out there till it started beeping low battery.
    There was also a great game of cards with my family and Rich with my hospital bed as the table played yesterday! Who imagined fun could be had in a hospital :) Everyone rushed up here for my surgery and then after it was cancelled we just had a small party – hahaha, like false labor! I am also disconnected today from the IV pump, but still have the IV in my hand till they let me go. Keep them coming Brevin :)

    [Reply]

  12. avatar

    Elise says:

    May 30th, 2009 at 5:18 pm

    Brevin, how are you doing? I have been thinking about you. I am at home, still waiting on June 23rd for all of my fun and games to begin. I am pretty miserable and not sure how the world I am going to make it that long, hopefully I will get a little better before surgery. Please let us know how you are doing.

    Sincerely,

    Elise

    [Reply]

    avatar

    Brevin Reply:

    Oy Elise.
    Feel free to email me at br3vin@gmail.com! I can cheer you up easier this way by sending you horrible, horrible links : )

    [Reply]

  13. avatar

    Ted says:

    June 23rd, 2009 at 1:33 pm

    Any updates? I’ve heard you went to the same surgeon I soon will probably go to.

    [Reply]

    avatar

    Brevin Reply:

    Hi Ted, I have this update here: http://www.jpouch.net/2009/06/10/the-first-surgery-one-month-later/
    I’m going for my post-op follow-up appointment this Friday and have a bunch of questions, so hopefully I’ll have some more info soon. But really, how awesome is it to sit through an entire movie, go shopping at Costco, and not worry about running off to the bathroom? So frickin’ awesome.

    [Reply]

  14. avatar

    J-pouch Life says:

    July 19th, 2009 at 10:51 pm

    […] today before lunch and already feel a billion times better than compared to the same time after surgery one. It’s truly amazing and I feel blessed. This has been a long time coming. Below is some recap […]

  15. avatar

    J-pouch Life says:

    November 10th, 2009 at 11:07 pm

    […] know how to add pictures as a comment. November 11th will be my 6 month anniversary of the first surgery and well, it’s pretty amazing. So much so that I have no idea what word in English conveys […]

  16. avatar

    Brandie says:

    May 19th, 2010 at 7:49 am

    This site was just what I needed. I just came home from my first J Pouch surgery and I am feeling much better. My surgery was very similar to yours and I even had the “wonderful” mushroom soup in the hospital. Everything went super smooth in the hospital, I was walking the halls the next morning, and in minor pain. My only complication even now at home is I can’t pee. Imagine that all the years of dealing with colitis and peeing being the least of my worries now I have a foly bag for ten days and hope to be able to go after that. Don’t take the simple things for granted. I hope everything is going well for you and thank you for sharing your story, it was very uplifting.

    [Reply]

  17. avatar

    Amy Laytart says:

    June 8th, 2010 at 5:24 pm

    I have had this same surgery, it was about 8 years ago and everything is still working great! I feel so much better without UC making my life horrible. My only problem now is I have trouble not knowing what I need to eat nutritionally to stay at a healthy weight…no colon means fiber doesn’t help! Any ideas on this?

    [Reply]

  18. avatar

    Mary says:

    August 15th, 2010 at 5:15 pm

    I am so Glad you are completely healed, God Bless you and take care of your self. My son is going to have this surgery too. Hard for him and the whole family but with God Blessing we are getting through this as a family. Will keep you in my prayers. Be Well.

    [Reply]

  19. avatar

    Paul Smith says:

    January 4th, 2011 at 10:58 am

    i have just come out of hospital some 3 weeks ago (18 Dec 2010) and like you quickly discharged. I was well looked after by the hospital staff Oldham Royal Lancashire. I had the operation done as an emergency and i was gutted when there was no other option. The operation is massive but a life saver in many cases and thankfully that was the case with myself. I found the stoma bag and fistula bag to be a pain at first and I`m still in the learning curve . I am, day by day finding it more manageable yet still learning the rota of the stomas movements !!! I havent got a name for it yet but “Smudger” springs to mind !!! I cant wait to get back to the gym and normal life as there is no reason not to. Secret !! great strong wife, children and friends and be open about it, laugh and joke at yourself and any ideas about stopping leaks says I the plumber !!!!!

    [Reply]

  20. avatar

    Paul Smith says:

    January 4th, 2011 at 11:06 am

    Brevin,
    Great story and typically opitomised my time in hospital. You are also damn right colitis sucks. For those who suffer and vist the kazi more than 15 times a day and multiple accidents in the car and not crashes !! should not hesitate in having this procedure. The pain relief is like nothing else. Take care and good luck.

    [Reply]

  21. avatar

    Janelle says:

    February 21st, 2011 at 5:38 pm

    I cant thank you enough for writing this. I had all of this happen to me, except the jp drain, i had the rectal tube. blak! My surgery was only 4 weeks ago but i still haven’t ever left my house yet. Main problem, i don’t know what to wear? My jeans fall right on top of my stoma so they are out and i hate sweatpants but i guess i have no choise. Did you or will you have the surgery reversed? I want to know if the reversal surgery is going to be as bad as this ileostomy surgery? I also wonder how that will work bathroom wise since i have no large intestine will i have diahreah again all the time? The ileostomy was by far the worse thing i ever went through in my life. Mine was emergency so i didn’t have a choise or even time to look up all this information. I also had a lot of complications afterwards. I ended up back in the ER for water around my lung most likely due to the 5 hour surgery or breathing tube. I was hospitalized a week before for my UC and because of all this laying around and not eating i lost 25 pounds and it left my legs to weak to walk.

    [Reply]

    avatar

    Jackie Z. Reply:

    Janelle my dear,
    Welcome to the club! I have written a boat load on my blog (and here) about maternity jeans. They got my through my first year of an ostomy. I am just NOW almost a year in and wearing regular pants again. Check out my blog, bloodpooptears.wordpress.com.

    I’m telling you maternity jeans. They are a WONDER for ostomies. Not only do they not put any pressure on the stoma site/bag, but they also provide support for the bag itself. They’re totally awesome. 

    [Reply]

  22. avatar

    Janelle says:

    February 21st, 2011 at 5:41 pm

    and one more question. How do you shower without your bag coming off? I have to wrap myself in seran wrap and tape. Is there a better way? I wont show without the bag because my “girl” aka stoma sputters ALL the time.

    [Reply]

    avatar

    Jackie Z. Reply:

    Also, Are you putting a new bag on right before your shower? I have used a few bagging systems and I never had this problem. You could try just taping around your edges. I’d recommend mefix tape. So far thats the absolute best I have found.

    [Reply]

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    wonderful site – 7 yrs severe UC  62 White Male trying to decide about J Pouch april 4 12
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