My surgery journey

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Kanva
Regular Member


Date Joined Mar 2017
Total Posts : 58
   Posted 5/8/2017 4:29 AM (GMT -7)   
At quincy's suggestion, I'm starting a new thread about my surgery, since the old thread was about whether to have it! I'll repost my first update from that thread and then more updates as warranted.
Here's the link to the first thread:
www.healingwell.com/community/default.aspx?f=38&m=3831297

So, to recap: Day 2 post surgery, and I'm happy to report I am doing really well!
Checking in and getting settled into pre-op felt like it took forever, but once the ivs were placed, everything went pretty quickly. They were all about getting pain meds on board that would help prevent post op pain response, which I think is huge.
Surgery went well, and I apparently took forever to wake up in recovery ... over three hours. They said it was because I got such a high dose of gabapentin.
All I knew afterwards was that I felt great! I couldn't believe that I felt so lucid and comfortable. I could feel that my body was happy to have the colon out, and I honestly felt better than I had in weeks. I slept soundly, it was fabulous.
Yesterday was a little rougher, which I knew would be likely as the anesthesia wore off. I had some pains in my shoulders from air being trapped in my body during surgery, and I had a hard time urinating after they took the catheter out. I could go, but just small amounts. In the evening my pain level started to crank up. Gas was part of the cause, and walking and heating pads and simethicone helped some. I even tried oxycodone, which I had thought I'd be able to avoid. I'm glad I took it, because it definitely helped relax the pain. Then, I took a drink of water and realized my bladder was probably full. It's funny ... The surgery moved around things and changed processes, so now I'm not sure how easy things like gas and a full bladder feel! By that time my pain was really climbing. I only managed to pee a little bit, and then they had the urology nurse come in to help me. She drained over 800 cc!!!! I felt so much better after that, although it took my abdomen a little while to calm down and readjust.
So, I have been doing great overall. Psychologically feeling happy and positive is huge ... just the hope that things are going to get better every day is enough to get me through any post surgery pain! I get to eat food, and it tastes good, and that's exciting.
The bag is less than thrilling, but it's going to be manageable. I've already practiced changing it once with an ostomy nurse.
They're saying I'm doing so well with recovery that they might discharge me today. That makes me a little nervous. While I feel I am doing well, it's also nice to have things set up to my advantage ... Hospital bed, grips in all the right places, etc. If they do discharge me today, we will stay at a hotel by the hospital for a least a day.
I know this is a little rambling .. I'm in a bit of a medication fog.
Thanks to everyone for checking on me, for being kind, and for being supportive ... This forum has been such a huge boost for me in the past weeks. I'll keep updating here.

Post Edited (Kanva) : 5/8/2017 6:03:07 AM (GMT-6)


Kanva
Regular Member


Date Joined Mar 2017
Total Posts : 58
   Posted 5/8/2017 4:48 AM (GMT -7)   
Day 3 post surgery:
Just got the early morning rounds visit, and they will discharge me today! Yesterday wasn't bad, but it was more painful than I thought it might be. I took advantage of oxycodone and took a couple extra naps. The pain seems more from surgery in general than from the incision: sore shoulders, sore ribcage, the general feeling of things trying to find their new homes.
I got to take a shower, which made me feel more normal. It seems like the more routine things I do, the more normal I feel. I'll have to remember that as I recover - avoiding the day-to-day may make it ultimately harder for me to get back to normal.
So today, when I am discharged, we will stay at a nearby hotel with a kitchen. I think getting there and figuring out how to set me into a normal bed and furniture will be quite enough of a challenge for the day! Then, if I'm feeling strong enough tomorrow, we will set off on the long trip home. We will break it up into two days so I can stop every hour to stretch. I am nervous about the discomfort of a car seat for that long, but I hope it will go ok.
Diagnosed with ulcerative colitis in 2011. In remission until 2015 with Lialda and prednisone.
No response with Entyvio or Remicade.
Currently azathioprine and 40mg prednisone. Heading for colectomy in early May.

noodlesnoodles
Regular Member


Date Joined Nov 2015
Total Posts : 273
   Posted 5/8/2017 6:08 AM (GMT -7)   
Good luck on your journey home tomorrow! Hopefully you just get to sleep a lot on the way smile
28 year old female
Issues began in July 2014
Capsule endoscopy in late March 2017 showed "suspected Crohn's Ileocolits"
After colonoscopy on April 14, 2017, was officially diagnosed with Ulcerative Pancolitis
Current meds: Apriso 4 x daily, Prednisone 20 mg, Canasa 1000mg suppositories (PM), Vit E suppositories (AM), Fish Oil, B12 injections monthly
Previous meds: Rowasa enema

Drosselscott
Regular Member


Date Joined Nov 2014
Total Posts : 20
   Posted 5/8/2017 10:29 AM (GMT -7)   
That might be a record for being discharged 😀 Glad to hear things are going well - it's a bit of a challenge at first, but like I said just feeling better overall is worth it! Feel free to ask questions and keep us posted 👍
Male/59. Diagnosed severe UC in 2012. Mostly Vegan diet for last 20 years. Tried different Mesalimine treatments, Prednisone, Uceris, 6MP, Humira, Remicade; all failed. Also tried Gluten free diet and many natural/alternative products with no success. Tried a myriad of probiotics including VSL3. Finally opted for three-step J pouch surgery and currently recuperating from third surgery.

Plucky
Regular Member


Date Joined Jun 2013
Total Posts : 357
   Posted 5/8/2017 11:49 AM (GMT -7)   
Wow Kanva! Congrats on the surgery! I admire your positive attitude. And thanks for making this thread so we can follow along!
37yr female, dx UC '04, dx changed Chron's Colitis '17
Currently: Humira, Apriso, Uceris foam enema, Prednisone 40mg and tapering 5mg/week, Buproprion, Synthroid
Started Humira Feb. 4, 2017 now 40mg/week
Previously failed Remicaid. Previously used: Asacol, Lialda, Delzicol, Pentasa, Cortenema, Rowasa, Canasa, Entocort, and Uceris.
I'm Gluten-free. Supps: VSL#3, Cal/Mag, Vit D, Krill oil, EZFE iron

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15424
   Posted 5/8/2017 8:55 PM (GMT -7)   
Please update again when you can. How was the trip to the hotel? I stayed in the hospital for the max time I think, which wasn't very long, I could have left after 3 days probably but I had a drain so I wanted to wait until it was out, because going back and fourth with the incisions and everything seemed like a lot to deal with. By the 5th day, I was dying to get out of there, I just didn't need to be there anymore and I wasn't in pain. I was ready to go home. Hope you're feeling good!
Co-moderator: Ulcerative Colitis
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish.

quincy
Elite Member


Date Joined May 2003
Total Posts : 29859
   Posted 5/8/2017 9:37 PM (GMT -7)   
Awesome news you're on your way home. Hope recovery goes smoothly!

Keep us updated.

q
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Airomir (asthma);Effexor XR 37.5 (depression)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care+Primadophilus Reuteri capsules @ bedtime)
~Metamucil capsules 7 @ 2x daily with meals; Vitamin D 4500 IU
~URSO 500mg @ 2x daily for Primary Biliary Cholangitis
My doc's logic.. "TREAT (FROM)BOTH ENDS" worth it !!!

Kanva
Regular Member


Date Joined Mar 2017
Total Posts : 58
   Posted 5/9/2017 9:35 AM (GMT -7)   
Small modification to plans: I ended up staying one more night because I was having quite a bit of output and it was pretty liquidy. They said I could have left, but it was either go sit at the hotel room a few blocks away or stay at the hospital and keep getting room service. So I took some Metamucil and stayed, and today everything looks good to go. Getting ready to check out now, and we're going to start for home today. I feel well enough that it doesn't seem like there's any need to stick around. So we will start the long slow trip, armed with peanut butter crackers, bananas, and stops every hour. We will make it a few hours today and then stop at a hotel. I'm excited to get on the road!

Aba
Regular Member


Date Joined Apr 2016
Total Posts : 51
   Posted 5/10/2017 1:58 AM (GMT -7)   
I'm glad you're doing well Kanva. Drinking lots of fluids will prevent the output from being liquidy. Which surgery did you have?
Male 33
Diagnosed ulcerative colitis April 2016, symptoms on and off since Jan 2016.
Current meds: Prednisone (tapering), Magnesium, Iron, lomitol as needed, morphine as needed
Past medications: Lialda, 6mp, cyclosporine, remicade, solumedrol
Supplements: Ferro-sequels iron
Total colectomy April 2017

cupcakespinkgal
Veteran Member


Date Joined Jun 2010
Total Posts : 1548
   Posted 5/10/2017 4:54 PM (GMT -7)   
I'm so happy for you that the surgery went well and sounds like your recovery is off to a great start. How was your trip home?

One of my staples at the beginning that slowed and thickens things up was pretzels dipped in peanut butter. A tip from my ostomy nurse that served me well!!

Kanva
Regular Member


Date Joined Mar 2017
Total Posts : 58
   Posted 5/12/2017 12:39 AM (GMT -7)   
Aba, I had a subtotal colectomy, which was step 1 of 3 surgeries for me to end up with a j pouch. I have an ilestomy now and will have my second surgery in 5-6 months, according to the plan.
Aba and Cupcakespinkgal, definitely in agreement on hydration and peanut butter!
Getting used to the ostomy has been pretty easy so far. It's not like monitoring my output is something new mentally, and I love that it's no longer bloody, it's fairly predictable, and it's totally contained! I did my first pouch change today, which was kind of hard ... took a lot of energy, and I don't have my confidence built up yet. I think it turned out fine, though, and my skin looked fine.
Today was my first full day home, and I spent it just getting my bearings. I hadn't been well enough to notice much of anything around the house before, so things like old mail, due library books, etc., are starting to come back into focus. Then I also had to adjust my living space to help make meds and clothing easy for me to get to ... I started to realize how much I'll need to watch out for on the weight restrictions. Setting up a card table in my bedroom did wonders so I won't have to shuffle stuff off the bed or remember not to pick up stuff off the floor.
One surprise was that I would have to give myself blood-clot preventing injections at home. I do NOT like poking myself, but having my husband do it seemed more awkward, so I'm sucking it up and trying not to dread them too much!
I'm enjoying being able to eat petty much anything, a big adjustment after the past year of worrying about how each food would make me feel. It killed my zest for eating, so it's a relief to feel that returning. I can't wait until I can have fresh fruits and veggies again!
People keep asking whether I'm sore or if it hurts to move. Surprisingly tricky question to answer. I'm not exactly comfortable, but I'm not in sharp pain anywhere. I just feel like my insides got shuffled around and still are settling into their new homes. But my body definitely gets tired by the end of the day ... not any specific soreness, but just a bone-tired exhaustion. Clearly it's going to take a while to build back my energy reserves. On the bright side, my mental clarity is so much better post-surgery that I feel like a thinking being again!
I'm starting my Prednisone taper tomorrow. My previous taper really zapped my energy, but I hope this time will be easier because I wasn't on it as long and because I don't have active disease. I look forward to sleeping through the night again!
Diagnosed with ulcerative colitis in 2011. In remission until 2015 with Lialda and prednisone.
No response with Entyvio or Remicade.
Currently azathioprine and 40mg prednisone. Heading for colectomy in early May.

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 11035
   Posted 5/12/2017 2:44 AM (GMT -7)   
Thanks for the update, it sounds like you're doing great! It's a major plumbing adjustment, so your body will take a little while to adjust and the aches/pains should subside in time.
Moderator Ulcerative Colitis
John
, 39, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; 75mgs 6MP, 4.8g Mesalamine DR, and rowasa

Oh god not again! We poop out things we haven't even eaten yet. Why aren't scientists all over that mystery!?!

Kulinarykidz
Regular Member


Date Joined Aug 2015
Total Posts : 439
   Posted 5/12/2017 5:18 AM (GMT -7)   
Congrats on the great results to you both!
Female 45 years old- uc diagnosed 7/13
Remicade every 6 weeks since 8/15
Imuran 150 mg, viramin d, probiotic, estrogen, pepcid ac
*hysterectomy, endometriosis and ovarian cysts removed---made a world of difference with uc symptoms!!

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15424
   Posted 5/12/2017 6:56 AM (GMT -7)   
Those shots are the worst. How long do you have to do them for? I only had them in the hospital, the moment I left, I was done with it. If you're walking, it's much less likely you will have a blood clot, but I guess it's good to er on the safe side. Using them longer doesn't hurt. I couldn't have given myself that shot, no way.
Co-moderator: Ulcerative Colitis
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish.

quincy
Elite Member


Date Joined May 2003
Total Posts : 29859
   Posted 5/12/2017 7:08 AM (GMT -7)   
Do you have good supports to help out while healing and doing some stuff you cant?
All sounds good so far 😊

q
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Airomir (asthma);Effexor XR 37.5 (depression)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care+Primadophilus Reuteri capsules @ bedtime)
~Metamucil capsules 7 @ 2x daily with meals; Vitamin D 4500 IU
~URSO 500mg @ 2x daily for Primary Biliary Cholangitis
My doc's logic.. "TREAT (FROM)BOTH ENDS" worth it !!!

cupcakespinkgal
Veteran Member


Date Joined Jun 2010
Total Posts : 1548
   Posted 5/12/2017 10:04 AM (GMT -7)   
I hated those shots too!! Those little suckers burn! I had to do them for 14 days at home after each surgery. It was standard protocols for all CR surgery patients to do them post-op even if you were mobile and lower risk for clots.

My first 2 surgeries I did them all. My 3rd surgery I was over it and only did the first week.

Awesome you continue to feel so much better!! No better feeling than getting your life back!

hateuc
Veteran Member


Date Joined Jun 2010
Total Posts : 2275
   Posted 5/12/2017 3:00 PM (GMT -7)   
Glad the surgery is over and it went well. Wishing you healing vibes and a smooth recovery!
B
UC diagnosed in 2010 but had prob. in 2009
2 Lialda/day Rowasa nightly, periodic anucort supp, Cortifoam as needed(needed more than I would like)
VSL#3, slippery elm
Metamucil capsules
Trying Gluten free (why not!)

Kanva
Regular Member


Date Joined Mar 2017
Total Posts : 58
   Posted 5/12/2017 5:50 PM (GMT -7)   
Boy, they do sting, and I get the for 30 days post surgery!
Diagnosed with ulcerative colitis in 2011. In remission until 2015 with Lialda and prednisone.
No response with Entyvio or Remicade, azathioprine.
Opted for three-step j pouch surgery. Completed step one, subtotal colectomy with ileostomy, May 2017.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15424
   Posted 5/12/2017 5:55 PM (GMT -7)   
That's insane. I seriously left the hospital to get away from that heprin shot. after step 1 is wasn't so bad because I have a nerve blocker in my belly, so I felt almost nothing. I would tell them where to poke after feeling around for a numb spot, but after the other steps, I felt it and it hurt. 30 days, that's a lot!!!!
Co-moderator: Ulcerative Colitis
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish.

ki-wi
Regular Member


Date Joined Jan 2015
Total Posts : 426
   Posted 5/12/2017 7:45 PM (GMT -7)   
thanks for the thread, ill be having mine soon, and its great to hear your story
M, 37. Pancolitis dx 2013

Plucky
Regular Member


Date Joined Jun 2013
Total Posts : 357
   Posted 5/13/2017 7:34 PM (GMT -7)   
Ok I feel like a super big pansy lately BUT I can say that I gave myself Heparin shots 2x per day, every day, for 10 months. I was pregnant and had already had two previous miscarriages--heartbreaking--so I gladly took the shots in hope of carrying a baby to term. I didn't think they were so bad.
37yr female, dx UC '04, dx changed Chron's Colitis '17
Currently: Humira, Apriso, Uceris foam enema, Prednisone 40mg and tapering 5mg/week, Buproprion, Synthroid
Started Humira Feb. 4, 2017 now 40mg/week
Previously failed Remicaid. Previously used: Asacol, Lialda, Delzicol, Pentasa, Cortenema, Rowasa, Canasa, Entocort, and Uceris.
I'm Gluten-free. Supps: VSL#3, Cal/Mag, Vit D, Krill oil, EZFE iron

Bull101
Regular Member


Date Joined Feb 2015
Total Posts : 460
   Posted 5/15/2017 8:12 AM (GMT -7)   
Hey just a heads up, if you don't sleep through the night don't get discouraged that can be pretty normal I think. I usually get up once a night 6 months post JPouch but I'm sleeping better now than I have in years. Took me a few months to get to this point too.

Drosselscott
Regular Member


Date Joined Nov 2014
Total Posts : 20
   Posted 5/16/2017 12:23 PM (GMT -7)   
Glad to hear you're doing OK👍 it is a big adjustment but it's one that you will get through. I wasn't a fan of the Heparin either; interestingly I had three different experiences with it during my 3 stages. after my first operation they sent me home with a 30 day supply like yours, and over the course of those 30 days I missed about seven days so after my second surgery I asked my surgeon if I would be getting a new supply and that I had a seven day supply left over; he said just do the seven day supply and promise me that you'll get up and walk every day and that's what I did. after my 3rd surgery he didn't send me home with any Heparin again after making me promise the same thing - that I would get up and walk every day, which I did.
Male/59. Diagnosed severe UC in 2012. Mostly Vegan diet for last 20 years. Tried different Mesalimine treatments, Prednisone, Uceris, 6MP, Humira, Remicade; all failed. Also tried Gluten free diet and many natural/alternative products with no success. Tried a myriad of probiotics including VSL3. Finally opted for three-step J pouch surgery and currently recuperating from third surgery.

Kanva
Regular Member


Date Joined Mar 2017
Total Posts : 58
   Posted 5/21/2017 8:59 AM (GMT -7)   
Well, I've made it to the two-week post surgery mark!
Medications: I'm tapering off prednisone, thank goodness. No more azathioprine or Remicade. For pain meds, I'm down to Tylenol three times a day (still long for oxycodone occasionally ... loved the soothing feeling! Lol). Still poking myself daily with Lovenox, and I figured out that singing along with music helps steady my hands.
Ostomy: So far, it feels like no big deal. I'm using a Hollister two-piece setup, and the bag is a little long for me my build, but overall it works fine. It seems so much more convenient to just empty it on my terms, not on my colon's!
Diet: It's wonderful to eat what sounds good and not worry that it's going to cause intestinal agony! My body seems to have been calcium-starved, because I am so hungry for dairy ... Cheese, yogurt, cottage cheese. I'm trying not to go too overboard.
Activity: I take one or two walks every day and aim to get 5,000 steps a day. In my healthy non-flare life, I used to aim for 10,000, so half that seems reasonable for a while. I walk about as fast as a turtle right now, but at least I'm moving!
Incision/surgery stuff: I get a little sore in my intestinal area after a walk or at the end of the day. It's in the lower left side, so I figure it's where the end of my colon was.
The only thing that kind of freaks me out is that I have bloody discharge from my rectum every couple of days. The doctors say it is diverted colitis, something that is normal after a colectomy. It doesn't hurt, but I can tell when it's building up. It's more like needing to urinate than needing to poop. It's been red/dark red liquid, about 2-3 tablespoons each time. I try not to worry about it, but it sets off UC panic bells for me still. I meet with a new GI specialist tomorrow (trying to replace the local one I got fed up with) and I'll see what he has to say about it.
People say I look better now than I did before the surgery, and my mind is feeling less foggy. I still get tired really easily, though. I have to take a nap by about noon every day. I'm going to start easing back into work this week, working about 10 hours from home. I plan to go back full time in two weeks.
I'm still trying to figure out my new wardrobe. I can wear some of my old clothes, but there's a pretty noticeable bulge with most items, and a lot of my shirts feel too short or tight. I got a maternity band, and I like the smoothing effect it has. I am debating whether to invest in special underwear with a pouch (Ostomysecrets), because the weight does feel kind of uncomfortable, and a corner of the bag tends to poke me in the leg. Since I am planning for the ostomy to be temporary, though, I don't want to go overboard with buying new stuff.
Overall, a pretty uneventful report, which is pretty awesome!
Diagnosed with ulcerative colitis in 2011. In remission until 2015 with Lialda and prednisone.
No response with Entyvio or Remicade, azathioprine.
Opted for three-step j pouch surgery. Completed step one, subtotal colectomy with ileostomy, May 2017.

quincy
Elite Member


Date Joined May 2003
Total Posts : 29859
   Posted 5/21/2017 9:34 AM (GMT -7)   
Wow...a great update! Happy to hear you're doing well. I don't know how much the ostomysecrets cost, but it might be worth the investment for the next few months and getting yourself into new clothing. It would be for comfort if nothing else.

Let us know how the appointment with your new GI goes tomorrow .

q
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Airomir (asthma);Effexor XR 37.5 (depression)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care+Primadophilus Reuteri capsules @ bedtime)
~Metamucil capsules 7 @ 2x daily with meals; Vitamin D 4500 IU
~URSO 500mg @ 2x daily for Primary Biliary Cholangitis
My doc's logic.. "TREAT (FROM)BOTH ENDS" worth it !!!
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