Surgery here I come (UPDATED 1 YR+ JPOUCH TAKEDOWN)

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Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3432
   Posted 12/18/2014 11:27 AM (GMT -6)   
good luck, good luck, good luck!!! I spend most of my time on the ostomy forum- stupid UC stole over a decade of life from me. Not now! I hope you have the most successful surgery possible- don't hesitate to post on the ostomy forum afterwards. It's amazingly reassuring & helpful. I think you will be extremely pleasantly surprised at how good you feel once your diseased colon is gone. And once you're off meds too! It's very liberating. Hang in there, only hours to go now.
diagnosed w/UC 2002
Tried Asacol, Rowasa, Pred, Cortenemas, Uceris, Rocephin, Cipro, Flagyl, Imuran, Remicade, Humira, turmeric, slippery elm root, marshmallow root, probiotics, homemade kefir, ayurveda, yoga, meditation, mindfulness, reiki, SCD, vegetarian, dairy free, nothing processed, gluten free... proctocolectomy w/end ileo on 4/14/14!

The Rock
Regular Member


Date Joined Nov 2014
Total Posts : 155
   Posted 12/20/2014 11:40 PM (GMT -6)   
I was wondering how the surgery went, any updates?! Did everything go over smoothly?! I hope it all worked out for the best.
Dx: Left Sided Colitis
Date of Diagnosis: June 2009
Current Status: Mid-Flare

Current Medications: Salofalk 500mg 8x per day, Prednisone 25mg, Betnesol Enema nightly
Diet: Dairy-Free, Preservative-Free, Alcohol-Free, Caffeine-Free, Low-Fat, Low-Fibre

SolomonSeal
Regular Member


Date Joined Jul 2014
Total Posts : 135
   Posted 12/25/2014 9:32 AM (GMT -6)   
Hey all.

I am alive. Surgery last Friday lasted 8+ hours. 2 stage thank goodness. Pathology is clean UC. My incisions seem to be OK and no sepsis.

I had a complication which was a blunder by the medical staff. No long term consequences, only lots of pain and extra hospital days. I will talk about it when I am a little past this.

Dealing with a lot of pain, nausea, cramping, GERD, and general GI distrress. That said things are objectively going very well. I am just fighting to stay sane and get out.
21 y/o male
UC: Diagnosed proctitis September 2013; pancolitis January 2014
Conventional drugs (Prednisone, Mesalamine, Humira) not successful
Antibiotics help a lot, Low Dose Naltrexone, CBD oil, Fish oil, Turmeric, occasional Vit D
SCD probiotic yogurt
SCD/Paleo diet
FMT 11/2014 w/ antibiotics & antibiofilms, aborted after 6 days worsening symptoms

The Rock
Regular Member


Date Joined Nov 2014
Total Posts : 155
   Posted 12/25/2014 12:07 PM (GMT -6)   
Hang in there buddy, this isn't permanent, the pain will go away and you will have your life back in a little while. You made it through the hard part, and you passed with flying colours.

Stay strong and hold on! Get some rest and keep us updated when you feel better.
Dx: Left Sided Colitis
Date of Diagnosis: June 2009
Current Status: Mid-Flare

Current Medications: Salofalk 500mg 8x per day, Prednisone 25mg, Betnesol Enema nightly
Diet: Dairy-Free, Preservative-Free, Alcohol-Free, Caffeine-Free, Low-Fat, Low-Fibre

SolomonSeal
Regular Member


Date Joined Jul 2014
Total Posts : 135
   Posted 1/12/2015 4:40 PM (GMT -6)   
Hey all.

I got out December 31. I have now been home for about a week. I had a very rough time in the hospital, but everything looks good for the long term. I do not regret my decision at all, especially in light of the post-op pathology (I do still mourn the necessity of the making the choice I did). There was a tiny carcinoid tumor, and although they said that I really wasn't at risk of cancer at all, it nonetheless makes me wonder what further colon problems I will avoid. My appendix had fecal matter in it... indicating that over some scale of time I was going to be at risk of peritonitis and emergency colectomy. The colon was quite diseased. Pathology, done by a very skilled pathologist, declared clearly UC, which was reassuring given some fears of Crohn's in the past.

I developed a post-op ileus due to morphine which was ineffective. The first few days after the operation were really hell. Emotionally/psychologically I had no idea how difficult things could be, but I had a ton of family support to get me through. My stoma had high output at the beginning and a sterile fluid collection formed behind my pouch. It was drained, but has since reformed (albeit even smaller now). My team is now less concerned by it, knowing that it is sterile and believes that it will be absorbed over time.

The complications were painful and frightening, but they were not severe, thank goodness. Although I am dealing with pain and fatigue and I'm not a fan of the ostomy, things are much better in many ways. I do not experience any UC symptoms, really. That in itself is remarkable. Right now I am trying to be patient in recover, in every sense of the word. I'm having trouble connecting to the j-pouch forums, but hope that will resolve soon.
21 y/o male
UC: Diagnosed proctitis September 2013; pancolitis January 2014
Conventional drugs (Prednisone, Mesalamine, Humira) not successful
Antibiotics help a lot, Low Dose Naltrexone, CBD oil, Fish oil, Turmeric, occasional Vit D
SCD probiotic yogurt
SCD/Paleo diet
FMT 11/2014 w/ antibiotics & antibiofilms, aborted after 6 days worsening symptoms

The Rock
Regular Member


Date Joined Nov 2014
Total Posts : 155
   Posted 1/12/2015 5:39 PM (GMT -6)   
Congratulations on pulling through, that sounds like quite the experience. Here's to hoping that you'll heal soon and feel better. You no longer have UC, that's something to celebrate. All the best.
Dx: Left Sided Ulcerative Colitis
Date of Diagnosis: June 2009
Current Status: Mild Flare

Current Medications: Salofalk 500mg 8x per day, Salofalk Enema nightly
Diet: Dairy-Free, Preservative-Free, Alcohol-Free, Caffeine-Free, Low-Fat, Low-Fibre

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 14529
   Posted 1/12/2015 6:40 PM (GMT -6)   
Thanks for the update. Seems like everyone has trouble with the temp ileo. I think it will get easier over time and before you know it you will be reconnected :)
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis, Laryngopharyngeal Reflux & Migraines. Battling Extreme Exhaustion.
Currently: prednisone + remicade

twingirl812
Regular Member


Date Joined Oct 2014
Total Posts : 111
   Posted 1/12/2015 7:08 PM (GMT -6)   
So glad to hear you are home and are on your way towards your recovery! Day by day you will feel stronger. At some point, you will reach your turnaround point and actually feel well & have energy! While in the hospital, did you have an ostomy nurse. If you did, take advantage of them. They are very knowledgeable , kind & patient. Wishing you all the best!!!!

Serialflusher
Regular Member


Date Joined Jun 2014
Total Posts : 57
   Posted 1/12/2015 8:42 PM (GMT -6)   
Glad to hear you made it through the first step. My first surgery of the two step procedure is coming up on 1/20. Wish I was in your shoes now and already past the operation!

soynomore
Veteran Member


Date Joined Jan 2004
Total Posts : 7665
   Posted 1/12/2015 9:07 PM (GMT -6)   
awesome SS - glad you are doing well -

and yes, take advantage of all the nurses - you may not get another chance turn
dx'd with pancolitis 12/21/03
in submission - 2 + years no meds
current supplements:probiotics, vit D, cal/mag, Psyllium Seed powder/Heather's Acacia fiber/ L-Glutamine/Hemp powder slurry 2x/week- no gluten, rice, corn, or soy & limited sugar - just good, healthy food, lots of all natural well water, exercise, sleep as much as possible & enjoy this great life that God has blessed me with :-)

SolomonSeal
Regular Member


Date Joined Jul 2014
Total Posts : 135
   Posted 1/15/2015 4:10 PM (GMT -6)   
For anyone reading this, I would offer a few pieces of advice on the most difficult time period: 12hr to ~day 4 post-op period.

At the beginning, be very careful with diet and pain meds. If you are maxing out the pain management pump using morphine, STOP USING IT. Ask for Dilaudid. Note that the pain will significantly ramp up in the 24 hours after the operation as sedative fully wears off. Taking narcotic pain meds will slow down your bowels, and they brought mine to a halt. Find something that works for you!

Walk. It will suck. So much. Heck, lying down sucked. Burp. There is a ton of gas in you. I walked down the ward belching and stoma farting with no shame, turning all heads. And because of it, the gas pains subsided sooner. Walk as many laps as you can, resting as needed. It was so hard for me with my NG tube, Foley catheter, JP drain, wounds, and fresh ostomy, but with every step you benefit yourself.

Don't be afraid to socialize, especially if you're in a hospital with other IBD'ers.

Once the pain is OK and you are strong enough, you might appreciate emptying your ostomy and drains yourself. It'll reduce the number of times you have to see your PCT or nurse (if you like privacy like me) and they'll appreciate it.

Thanks for all the support, guys. :)
21 y/o male
UC: Diagnosed proctitis September 2013; pancolitis January 2014
Conventional drugs (Prednisone, Mesalamine, Humira) not successful
Antibiotics help a lot, Low Dose Naltrexone, CBD oil, Fish oil, Turmeric, occasional Vit D
SCD probiotic yogurt
SCD/Paleo diet
FMT 11/2014 w/ antibiotics & antibiofilms, aborted after 6 days worsening symptoms

Tunnelvisionary
Veteran Member


Date Joined Jul 2014
Total Posts : 527
   Posted 1/15/2015 4:16 PM (GMT -6)   
Glad to hear things are looking up Solomon. Keep us posted!
Male - 22
Dx'd w/ UC on 7/14. Recovering from an eating disorder, please no major diet mod suggestions.

Currently taking: Lialda 2x, Looking into VSL probiotics. Vitamin A+D and a multivitamin.

Pluot
Veteran Member


Date Joined May 2012
Total Posts : 2500
   Posted 1/15/2015 5:13 PM (GMT -6)   
SolomonSeal said...
At the beginning, be very careful with diet and pain meds. If you are maxing out the pain management pump using morphine, STOP USING IT. Ask for Dilaudid. Note that the pain will significantly ramp up in the 24 hours after the operation as sedative fully wears off. Taking narcotic pain meds will slow down your bowels, and they brought mine to a halt. Find something that works for you!


Dilaudid slows the bowels just like morphine. Your best bet for pain management without slowing the bowels is Tylenol.

Glad you're doing well and I agree with the rest of your post-op advice :)
Liz, 27
itslikethisuc.blogspot.com

dx'ed UC pancolitis 5/12

past meds: asacol hd, VSL#3, apriso, rowasa, xifaxan, 6mp, cortifoam, pentasa, cimzia, canasa, butyrate, flagyl, cipro, prednisone, remicade, methotrexate, cholestyramine, cortenema

current meds: none!

step one: colectomy, end ileo 1/16/13
step two: j-pouch construction, loop ileo 5/1/13
step three: takedown 7/31/13

LeanneRachel
Regular Member


Date Joined Nov 2014
Total Posts : 66
   Posted 1/15/2015 5:41 PM (GMT -6)   
Glad to hear that you're doing well! Take care and keep us updated.
19 years old, diagnosed with mild colitis at 18. Turned severe as of August 2014.

Currently taking:
40mg Prednisone, 50mg Azathioprine, 4g Mesalazine, Adcal D-3, 15g Lansoprazole, 1g Mesalazine foam enema, 30mg Mirtazapine, 10mg Domperidone as needed, 2mg Diazepam as needed

In a stubborn flare!

Katmom
Veteran Member


Date Joined Mar 2008
Total Posts : 1200
   Posted 1/16/2015 8:33 AM (GMT -6)   
Thinking of you SS. If it is any comfort, you are through the worst. Take small amounts of food, then small amounts of water frequently throughout the day. Dehydration is frightfully easy with the darn loop. Don't ignore watery consistency for long.
Things here are really good. My D is packing for a long trip with friends, has been going out to exotic dinners(seriously, after plain rice and noodles, she is eating all kinds of stuff). Energy back, pain down. You are going to feel good again, but take it slowly. Ask at the Ostomy forum is you have appliance Q's.
Daughter, 21 diagnosed 1-08 w/ UC
Drug sampling: Asacol,Cortifoam, 6mp,Colazal,Rowasa,PPI'S, Flagyl, Pred.,Diet not directly impactful.Remi w/adjustments= remission 4 yrs, re-remission with Tacro 6 mo. Back to Endocort, Uceris,Canasa, hospital(#10), Pred. Pancolitis via scope.Retried Remi. Entyvio, loading doses didn't stop train-surgery Step 1, 8/28/14 Step 2(of3) Dec 5.

SolomonSeal
Regular Member


Date Joined Jul 2014
Total Posts : 135
   Posted 1/16/2015 10:32 AM (GMT -6)   
Pluot said...
SolomonSeal said...
At the beginning, be very careful with diet and pain meds. If you are maxing out the pain management pump using morphine, STOP USING IT. Ask for Dilaudid. Note that the pain will significantly ramp up in the 24 hours after the operation as sedative fully wears off. Taking narcotic pain meds will slow down your bowels, and they brought mine to a halt. Find something that works for you!


Dilaudid slows the bowels just like morphine. Your best bet for pain management without slowing the bowels is Tylenol.

Glad you're doing well and I agree with the rest of your post-op advice :)


You're right, any narcotic slows down bowels, but had I been given dilaudid earlier it may have prevented my (and others') ileus. Dilaudid is actually much more powerful, BUT if it works better for you than morphine you don't have to use too much of it. By not using as much you minimize the slowing effect. Also, while Percocet is much weaker, I believe that it contains Tylenol, which as you said does not have that effect.

Katmom, thanks for the update. My loop ileostomy itself has been a champ: nutrition and hydration have been excellent (ironic, given that I named it Rowdy). I am delighted to hear that your daughter is returning to Life again. I am slowly doing the same. The week I got out of the hospital I was already looking at fresh internship applications... I just have to take it slow. Just wondering: can she get more than 2-2.5 days of seal out of her ostomy bag? While I know she doesn't have the hairy belly problem, I imagine she shares my skinny belly problem. Does she also have difficulty with the flange not adhering well to the concave surface around her navel? It's really making the bag a hassle for me... I will also post on the ostomy forum.
21 y/o male
UC: Diagnosed proctitis September 2013; pancolitis January 2014
Conventional drugs not successful
Antibiotics help a lot, Low Dose Naltrexone, CBD oil, Fish oil, Turmeric, occasional Vit D
SCD probiotic yogurt
SCD/Paleo diet
FMT 11/2014 w/ antibiotics & antibiofilms, aborted after 6 days worsening symptoms
Nothing worked. 12/2014 Proctocolectomy with ileal pouch anal anastomosis

Contentprof
Regular Member


Date Joined May 2014
Total Posts : 409
   Posted 1/16/2015 12:39 PM (GMT -6)   
SS - thanks for sharing details of your experience. Your strength is inspiring!
Wishing you steady, comfortable healing as you go through this next phase.
55 yrs old. UC >12 yrs after proctitus. For flares failed prednisone, cortenemas, mesalamines (hives, fever), 6mp (fever), Uceris (no effect). 12/13: remicade stopped severe flare! 6/14: stopped remicade due to debilitating joint pains & muscle weakness. Dx as Adverse reactions: Anti-TNF Induced Lupus; polyneuropathy; recovered w/prednisone (40mg taper over 4 months). Next UC meds?

Katmom
Veteran Member


Date Joined Mar 2008
Total Posts : 1200
   Posted 1/16/2015 2:17 PM (GMT -6)   
SS. She is only getting a few days now that the end illeostomy is gone, and she switched to a convex wafer. Coloplast, 2 pc, Mio system, drainable. Likes the Mio 2 pc. Click, but it didn't have a convex wafer. Also switched to paste, and once it worked, didn't want to switch again. Was using those half moon barrier strips too, to be extra safe. Sorry, Non surgery folks for tmi. If more Q's ck in at Ostomy, I look at daily. There are experts there with lots of tricks, I am too new, and only have second hand info. No hairy belly, lol. I feel like I should introduce you two!
Daughter, 21 diagnosed 1-08 w/ UC
Drug sampling: Asacol,Cortifoam, 6mp,Colazal,Rowasa,PPI'S, Flagyl, Pred.,Diet not directly impactful.Remi w/adjustments= remission 4 yrs, re-remission with Tacro 6 mo. Back to Endocort, Uceris,Canasa, hospital(#10), Pred. Pancolitis via scope.Retried Remi. Entyvio, loading doses didn't stop train-surgery Step 1, 8/28/14 Step 2(of3) Dec 5.

ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 4382
   Posted 1/16/2015 2:42 PM (GMT -6)   
I really liked the "half-moom barrier strips" aka Coloplast Brava Barrier Strips. They worked so well that they were difficult to remove when I had to change my ostomy. Other manufactures make similar products.

With my Loop Ileo I wore an ostomy belt, it might help prolong your ostomy products with the issue around your belly button. The paste will also help.
Keith

DX'd with Severe Pancolitis June 2005
Previous Meds: 5ASAs, Predisone, 6-MP. Remicade, Humira, Simponi, Cyclosporine -- Twice
3-step J-Pouch surgery:
Colectomy- October 2013
J-pouch Creation: March 2014
Take-Down: June 2014

SolomonSeal
Regular Member


Date Joined Jul 2014
Total Posts : 135
   Posted 1/22/2015 2:04 PM (GMT -6)   
Katmom, I was getting 12 hour wear time with Convatec... their papery wafers were pretty useless. Hollister does seem better, but right now I'm also wearing the Mio! It's the one-piece, but so far it looks like the best bag I've tried by far. If I can get 4 days of seal out of it, this will be my bag of choice. I'm also using the half moon brava barrier strips, they are great and I am looking forward to seeing how this bag performs with daily showers. I would be happy to be introduced of course. :)

Otherwise I'm improving despite a recent sinus bug. I'm still anxious about the risk of abscess, but I'm not going to let it worry me too much. My appetite is OK, but I used to be a voracious eater and am struggling to gain weight (only at 122lb now... I look like a scarecrow). I'm breaking some Paleo rules in order to get more calories.

Edit: these "degradable" stitches are quite annoying... it's been over a month and they are all very much still there.

ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 4382
   Posted 1/22/2015 2:31 PM (GMT -6)   
SolomonSeal said...
If I can get 4 days of seal out of it, this will be my bag of choice. I'm also using the half moon brava barrier strips, they are great and I am looking forward to seeing how this bag performs with daily showers. I would be happy to be introduced of course. :)


The barrier strips are great but the only problem is they are really difficult to remove when you have to change your appliance.
Keith

DX'd with Severe Pancolitis June 2005
Previous Meds: 5ASAs, Predisone, 6-MP. Remicade, Humira, Simponi, Cyclosporine -- Twice
3-step J-Pouch surgery:
Colectomy- October 2013
J-pouch Creation: March 2014
Take-Down: June 2014

Pluot
Veteran Member


Date Joined May 2012
Total Posts : 2500
   Posted 1/22/2015 4:25 PM (GMT -6)   
If the stitches haven't dissolved yet, they can be removed by hand by a doc or nurse. My body doesn't break them down either so my WOCN snipped them out.
Liz, 27
itslikethisuc.blogspot.com

dx'ed UC pancolitis 5/12

past meds: asacol hd, VSL#3, apriso, rowasa, xifaxan, 6mp, cortifoam, pentasa, cimzia, canasa, butyrate, flagyl, cipro, prednisone, remicade, methotrexate, cholestyramine, cortenema

current meds: none!

step one: colectomy, end ileo 1/16/13
step two: j-pouch construction, loop ileo 5/1/13
step three: takedown 7/31/13

SolomonSeal
Regular Member


Date Joined Jul 2014
Total Posts : 135
   Posted 4/17/2015 7:17 AM (GMT -6)   
Hey guys, I guess I'll update you.

Colectomy was the best decision I've made with my life and I do not regret it. February until now (takedown) has been one of the happiest periods of my life (despite being bored at home). I did very well with my stoma and gained weight/muscle.

Before takedown, I had some rectal bleeding. It turns out that my rectal cuff was/is inflamed. My surgeon said that this should resolve after takedown. Honestly, having felt so good with my ileo and being concerned about the rectal bleeding and urgency, I asked my surgeon about the possibility of permanent ileostomy. He said that I would be crazy not to try the pouch and convinced me to give it a year.

Takedown was 4/10. It is a much more difficult operation than people suggest, and right now I am not enjoying life with my j-pouch... I'm just waiting for the improvements to come. The part of me that was perpetually disappointed with UC thinks that the cuffitis is real and that I am going to be experiencing UC symptoms all over again.

If I could go back, I probably would have not bothered with the pouch and asked for a permanent ostomy. I wish I hadn't taken the risk on myself. That said, my surgeon is confident that my pouch will be normal. In any case surgery was the right decision and my life is getting on track... I'm only concerned that I'll have to do to the pouch what I did to my colon.
21 y/o male
UC: Diagnosed proctitis September 2013; pancolitis January 2014
Conventional drugs not successful
Antibiotics help a lot, Low Dose Naltrexone, CBD oil, Fish oil, Turmeric, occasional Vit D
SCD probiotic yogurt
SCD/Paleo diet
FMT 11/2014 w/ antibiotics & antibiofilms, aborted after 6 days worsening symptoms
Nothing worked. 12/2014 Proctocolectomy with ileal pouch anal anastomosis

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5687
   Posted 4/17/2015 7:31 AM (GMT -6)   
An ileus is a common complication post abdominal surgery and no doctor can predict it. Like you have learned, the biggest thing one can do to prevent an ileus is to walk, walk, walk. My surgeon had all his patients walk a full mile before he would release them home. And we were ordered to build on that daily once home. I had a text book recovery, was driving in 7 days, and back to work at the 3 week post surgery mark. Stay hydrated and keep moving.

Sue
Moderator, Ostomy Forum

Ulcerative Colitis- 1987-2001
2001- opted for j-pouch surgery

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 14529
   Posted 4/17/2015 9:30 AM (GMT -6)   
I worry about cuffitis too... actually, i went on a surgery consult with one doctor who leaves a bit of the cuff in tact, she said that gives you the least chance of having nerve damage. I like the idea of that but I don't like the idea of cuffitis. The other surgeonI want to consult with does a mucusectomy (i think this is what it's called - i am not a surgery expert so I can only absorb so much technical stuff). This procedure basically strips the cuff so you can't get cuffitis but I guess there is a chance of nerve damage. They say with a skilled surgeon the chances of nerve issues are very low but it's a serious risk that I wouldn't want to deal with.

I do think you have to give yourself time. They say it's really difficult right after takedown and things improve over time. I think you will be happy with your decision and if you're not, you can always go back to the ileo.
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis, Laryngopharyngeal Reflux & Migraines. Battling Extreme Exhaustion.
Currently: entyvio / Apriso
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